Living and dying well after stroke

Scott Murray and Marilyn Kendall talk about the rich evidence from their in-depth interviews, which could guide provision of person-centred care after major stroke and support people in living and dying well.

Editor’s note, December 2022: This is our most read blog in 2022 and people continue to share their experiences in the comments. Thank you to both our bloggers and our readers; we are glad that many people are finding something helpful here. 

Living and dying well after stroke

Much is written about living with stroke, but little about dying after stroke. Yet most people with a severe stroke will die within 6 months. Does palliative care have a place to help such people maximise their quality of life and help them die as well as possible? Is it needed? Do people want it? How well does rehabilitation address people’s emotional needs as well as their physical?

The WHO declared 30 years ago and recently affirmed that any life-threatening illness (like a severe stroke) should immediately trigger consideration of a palliative care approach [1]. This means that attention is routinely paid to all dimensions of distress, including physical, social, psychological and spiritual, according to what is most important to the patient and their family at the time. Patients should then also be actively involved in planning ahead with care professionals to address uncertainties and prevent unnecessary suffering.

dying well
Our primary care research group at Edinburgh University has been generating evidence to advocate for early person-centred care

Our primary care research group at Edinburgh University has been generating evidence to advocate for early person-centred care and planning for everyone with various life-threatening illnesses. Over the last 15 years, we have conducted many serial interview studies with patients in their last year of life and their family and professional caregivers. We have developed this method to yield multi-perspective dynamic accounts [2],[3]. This has allowed us a nuanced understanding of the experiences, needs and preferences of patients with various illnesses: progressive cancers, advanced organ failure (heart, lungs and liver) or with frailty [4],[5]. We have vividly highlighted disparities in health and social care provision for those with non-malignant conditions, and that palliative care is usually introduced in the last weeks or days of life rather than earlier when it can lead to most benefit and reduce inappropriate treatment.

Our stroke study

In our latest study published in March 2018  in the Canadian Medical Association Journal, our group united with Professors of Stroke Medicine (Gillian Mead in Edinburgh and David Stott in Glasgow) and other leading hospital clinical specialists in Scotland to try and reach a multi-disciplinary understanding of what palliative care may or may not offer stroke care.

We conducted a qualitative study of patients’ quality of life and a data linkage study exploring patterns of death after a severe stroke. For the linkage study, we identified 219 patients with total anterior circulation syndrome admitted to three stroke units in Scotland. The fatality rate within six months was 57%.

From this same cohort, we recruited 34 patients and their informal caregivers for the qualitative longitudinal study. They completed questionnaires and participated in in-depth interviews at up to six weeks, six months and one year post-stroke. These participants’ mean age was 75 years, 18 were being tube fed, 24 had aphasia, 20 had a urinary catheter and 18 had an informal caregiver at home.

In the serial interviews, we identified several major themes:

Patients and relatives faced death or a life not worth living and experienced immediate and persistent emotional distress.  Those who survived expressed grief for a former life. Families reported that, despite the high risk of death, care was overly focused on physical recovery with little attention to emotional needs or preparation for death.

“If they had told us the magnitude of the stroke as far back as the first hospital visit we would have done things differently, rather than pushing for something that was never going to happen”. 

Study participant whose father died

Professionals focused on physical rehabilitation rather than preparing the patient and caregiver for death or limited recovery. Like patients, they associated palliative care with doing less rather than more care and planning.

“We need her thinking it’s going to get better otherwise she won’t commit and then you won’t get the same outcome”.

Ward Physiotherapist

“suppose it depends what we mean by ‘palliative care’, but it’s, you know, no more needles and no more drips and no more antibiotics …”

Hospital doctor — first interview

For all involved, although there were frequently good discussions, constructive planning was challenging.

“I mean, they sit and explain everything to you, but you’re still coming away with nothing”

Interview extract from a caregiver

As major stroke brings likelihood of death but little preparation, we suggest:

  • Rehabilitation should incorporate the principles of palliative care to address the emotional, social and spiritual – as well as the physical – needs of patients.
  • As dying is a real risk with patients with major stroke, a model of care planning balancing hoping for the best with preparing for the worst from admission is realistic. This is acceptable to patients and their carers based on these interviews.
  • Many people with a severe stroke die within 6 months despite excellent and speedy medical care. Whilst we hope for a good recovery, relatives and patients also should be supported in preparing for the worst to help them focus on quality of life. Their care should reflect the possibility of death and disability. They should have a plan A and also a plan B. This aspect of care should be considered in overall care for patients with stroke
  • Practising the principles of palliative care is appropriate and indeed needed, but the term ‘palliative care’ should possibly be avoided or reframed. The term “palliative care” had connotations of treatment withdrawal and imminent death.

Jessica Simon of the University of Calgary in Alberta, Canada, author of a related editorial in the same journal, commented:

“Using a palliative care approach that attends to prevention and relief of suffering, whether physical, social or emotional, can help patients and those close to them as they grieve the losses that come with that stroke and can help them to keep living as well as they can, whether or not death ensues”

The value of qualitative studies

Policymakers and guideline developers need relevant and context-sensitive evidence to support innovations and interventions.  We would like to emphasize the usefulness and the value of qualitative evidence regarding the experience of people with life-threatening conditions during their last year of life.  This type of evidence is useful to assess the needs, values, perceptions and experiences of stakeholders, including policymakers, providers, communities and patients, and is thus crucial for complex health decision-making. [6]

We would like to congratulate Cochrane on their increased interest in reviews of qualitative evidence.  In this regard, the Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach, which has been developed in order to support the use of qualitative evidence in decision-making, is a very valuable development. This approach is now used by WHO, allowing qualitative evidence to support recommendations.

Dr Marilyn Kendall is a Senior Research Fellow at Edinburgh University with much experience in qualitative methods and conducting high-impact research. She is a Social Scientist and teaches qualitative research at Edinburgh University.

One of the main challenges we face moving from evidence to improved care is to be able to make recommendations regarding the services and interventions that would optimally meet the specific needs of patients and their carers.  Synthesis of qualitative studies has great potential to generate many useful insights in helping people with stroke and other life-threatening illnesses live and die well. Based on a qualitative analysis [7], we have produced a 3-minute video that gives a rationale for early palliative care for people with different conditions. We now plan to extend this to include people with major stroke.

Scott Murray and Marilyn Kendall have nothing to disclose.

References (pdf) and useful links from the Primary Palliative Care Research Group, University of Edinburgh:


Living and dying well after stroke by Scott Murray

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

161 Comments on this post

  1. I wish I would have found these comments sooner, I have been trying to find a place where others are talking about their loved ones stroke journeys. 4 months ago my 94 year old nan suffered a massive ischemic stroke. Although she is 94 she was the most able 94 year old you would have ever met, she looked a lot younger and her only issues were with that she was partially blind but medically she was fit as a fiddle. After this stroke she was paralysed down the left side of her body and fully incontinent but her mind was still there, she was able to talk etc. After weeks of terrible NHS care and little to no communication from the nurses and doctors they mentioned that they would look into her being able to come home with 24 hour care, before we even got the chance to set up a family meeting, that night she then suffered a massive hemmorrhagic stroke. Once again she bounced back and although weaker her mind was still there and still had full capacity. Then a few weeks later, again doctors talk about her coming out she then suffers a big seizure and we get called to her bedside as she was unresponsive. But then she bounces back, a little harder to hear her speak but still there in her mind and able to talk and definitely ‘with it’. Another few weeks pass and she suffers another seizure, this one minor. This has now been around a week since this last seizure and things has drastically changed. There has been concerns for months regarding her not eating and drinking enough and she has lost alot of weight and is just skin and bone now. The mention of a feeding tube was dismissed by the doctors due to it being too traumatic for her, surely it would be worth a shot? Not eating and drinking and starving to death would be worse surely?! 2 days ago we got told they were putting her in a care home for a few weeks to assess her ongoing needs , we have now been told she is dying and has days left to live. She’s an awful mess, the dramatic turn this last week has been absolutely heartbreaking and she is so very weak now, very thin and sleeping alot more. She barely speaks now, she will say a word or two and we can peace together what she is saying but it’s like she can’t speak properly now and her brain seems to delay her responding but most of the time she’s unable too. Although now we can’t have conversations and it’s a word here and there she’s still in there, every now and again she will say a phrase or answer a question and it’s like her body is giving up but her mind isn’t ready? I wonder if this is the strokes and seizures or if it’s the malnutrition for so so long that have weakened her and effectively she’s starving to death? I can’t even put into words how utterly heartbroken I am in thinking what if they worked harder to feed her, would things have been different? They would only try at set meal times when she used to say I’m not hungry at 7am can you wait and they didn’t? Should they have tried harder or was it just nans body rejecting food as she always said she kept feeling sick and didn’t want it. They have told us they will put her on morphine in a few days but after reading a horror story about that I’m now panicking as she’s not in any pain so why would they put her on morphine? I’ve read it will just make her hallucinate and make her sleep a lot and not be able to speak until she slips away? Effectively killing her with a drug? I know she’s 94 but I worry that she isn’t ready and this isn’t her time and she’s being given up on and forced to die from starvation and drugging her when all it might have needed was to try harder with food and water? Maybe that would have given us more time with her? She mouthed to me tonight how much she’s going to miss everybody, she’s not ready yet and this is absolutely breaking me

    Becki yates / Reply
    • Dear Becki, I’m so sorry you’re going through this, and glad you have found this blog where so many people have shared their own difficult experiences – I hope there is something helpful for you here. Whilst we can’t comment on individual circumstances, I wonder if it would help you to read my blog on talking about dying In the section ‘we need to talk about dying’, I refer to the wonderful palliative care doctor Kathryn Mannix’s explanation about not giving food (and drink) at the end of someone’s life. She tells us that not eating when we’re dying isn’t the same thing as starving. A dying person uses little energy and has little need for calories. Feeding tubes would deliver food into a gut that isn’t functioning. It runs through as diarrhoea, regurgitates back or causes cramps. It can really help to understand this. On that same page there are links to some really good resources, including by Dr Mannix.
      Wishing you strength and peace,
      Sarah Chapman [Editor]

      Sarah Chapman / (in reply to Becki yates) Reply
  2. I appreciate the way your blog celebrates the beauty of diversity and inclusivity.

    • My friend’s husband had a stroke closing in on three yrs ago ,severely affecting his right side and speech.After intensive hospital stay with therapy he returned home to more specialized outpatient therapy and continues with speech therapy.Dedicated caregivers are his wife and 3-4 regular respite friends.Since May he has had bile duct stents, removal of gall bladder, stents removed and after these three surgeries appears tired of being. He has mostly lost his speech, still has great levels of discomfort and pain. Your article gives me hope that palliative or hospice care could help guide him through looking toward the future in more comfort. Still trying to figure out how to compassionately help lead these dear friends through the maze of getting connected with said care.

      Janice/Aug31, 2023 / (in reply to beylikdüzü masaj salonu) Reply
  3. My mom a vibrant independent 65 year old suffered a massive stroke in late February. We did our acute rehab for a month, after a month-long hospital stay (she suffered a seizure shortly after stroke). She was discharged under my care and only lasted five days before having to admit her to hospital for low potassium and diverticulitis. We managed to get her more acute rehab for another month. I was so thankful for the referral, thinking this would be the best option for her recovery. My mom has global aphasia, right side paralysis, non verbal, cannot utilize restroom, has to have assistance 24/7. I noticed a change in my mom and her mental health, I also noticed she wasn’t getting stronger but instead weaker. I can see in her eyes she is miserable. She cries often and it breaks my heart in to a magnitude of pieces. I wish I could take this away from her and feel so helpless that I can’t. Recently, my mom has decided to quit the second round of rehab. She prefers to go home and do palliative care into hospice. So, I have begun the process of her request. She is tired and doesn’t want to live this way. She has shared in her own way that she feels her body is trying to fight but slowly giving out. I’ve done so much research b/c I’m not sure what to prepare for, what to expect, feelings, etc. etc. etc. I have been in survival mode through this whole process but now feel completely numb. My mind won’t stop racing to what I know is to come soon…(days, weeks, months). I’ve told her I am preparing everything and once home we are in no rush, but to take one day at a time. She agrees. She cries to me more and more as days go by and I have been so strong up until recently. I cry with her now. This woman raised me solo, raised me with thick skin and independency to take care of myself and survive the world with all its trenches. This is earth shattering and I fear my emotions once we go into hospice. I can’t bare to think that I am going to lose my mom. I’ve been told she might make a turn but instead of cheer leading I now respect my mom’s wishes and support her in all decisions. I just hope I can handle this and survive it. This hurts.

    Lillian / Reply
    • Dear Lillian how is your mom doing? I am going through almost the exact same situation.

      Carolina / (in reply to Lillian) Reply
  4. Firstly, a wonderful channel for communication with others that have experienced loved ones struck down with such devastation. My mother had turned 80 years (030523) and on her her day suffered a haemorrhagic stroke leaving her with right side paralysis, inability to communicate or swallow and full bed assist. My initial awareness of the emergency was being contacted by the treating Emergency neuro during her admission. An immediate CT had been conducted and prognosis was not good. I and my mother had been fortunate some months earlier to draft an advanced care plan with our family GP in the advent of such things occurring. Alas, as with others experiences there is nothing in this world that can ever prepare you for having to inform the treating Neuro of that directive for no surgical interventions. How to emotionally rationalise such a phone conversation is utterly perplexing and still to this day leaving myself in a vacuum numbness and fear, am I right or wrong?

    After 48 hours her condition had not improved, stabalised yes, zero facial expressions, BUT acknowledgement of simple words via holding her unaffected hand and light squeezes. The greatest gift one could ever conceive was for this and the words of her grandson to wish her all our love.

    After 72 hours the NaCI IV line was removed and proceeded with palliative protocols. I requested time before drug administration and spent 6 hours talking to her, very slowly. Truly a rewarding and emotional experience for myself and one hopes her to give her comfort in her last hours. We are located in Australia and had a wonderful palliative team of doctors. As I write this she will be transported to her regional hospital town ship in the morning of the 090523 so as she can pass away peacefully with loved ones and friends.

    Rest assured these words do not come easy as I can only write from my own experience. Trying to determine a right course or action framed on clinical advice and emotions with an overwhelming sense of feeling helpless is something which needs to be overcome. The commented experiences have been vital for myself and family members seeking a rationale to curb the emotional roller coaster and address the quintessential thing we all desire for our loved ones . . . A Quality of Life.

    Thank you all for your words.

    Mark / Reply
  5. So grateful to find this page. My beautiful, kind mum had a major stroke on Tuesday 31st Jan 2023. She died 5 days later (yesterday as I write) following end of life ‘care’ which is the biggest oxymoron known to man. We live in Nottingham, in the UK. The specialist acute stroke ward at the hospital was shambolic. I won’t list the catalogue of failings here, but what I do want to share is the truth about my experience. Firstly, I was the one who had to raise moving to end of life care with the doctor, after seeing just how severely damaged my mum was. The doctor agreed that it was the ‘kindest’ option given the severity of my mums stroke. Had I not raised this with the doctor, my mum would have been left to fight a pointless and futile battle. If the doctor agreed with my conclusion (from a completely none medical person) why hadn’t he come to me with it first? Secondly, end of life ‘care’ was simply stopping my mum receiving any fluids or food. Her drip and feeding tubes were removed. So in short, this meant she was being starved to death. Mum wasn’t having any medication so the common notion of ‘stopping treatment’ is not reality. The hard truth is that it was the denial of food and water that brought my mums life to an end and not the brain damage from the stroke. Because my mum was so fit and healthy before the stroke, the shutting down of her healthy vital organs (outside of her brain) was traumatic and prolonged. We had to push to get a morphine administrator as well as a muscle relaxant in order to ease the pain and discomfort that my mum was clearly in whilst her organs shut down.
    Don’t get me wrong; the severity of the stroke meant that ending mums life was the right and kindest thing to do, despite being the hardest decision I will ever make and one that I must live with. But the method of doing so is absolutely wrong. We treat dying animals with more respect and dignity. Why, after the family and the doctor agreeing that it was kinder and medically justifiable, to end mums life, couldn’t there have been an injection to do so immediately instead of watching mums agony for the 4 days that it took to starve her to death?? It makes absolutely no sense, and to call it end of life ‘care’ is a lie. Of course, the failing NHS didn’t help (it was a combination of chaos, neglect and complete unprofessionalism and incompetence from 98% of the staff across all levels causing such deep distress and anger). Taking the suffering out of the equation, surely a single injection would cost less than all of the morphine, staffing and bed space? But the suffering IS the biggest part of the equation by far, and it is quite simply abhorrent. Major stroke patients should be allowed to die with dignity, quickly and pain free. The reality is that the end of life ‘care’ approach is unnecessarily and cruelly prolonged, humiliating, degrading and excruciating, possibly just as much as keeping someone alive after a major stroke who was less than zero quality of life. Something must change and I do hope this contribution is a clear enough example of why.

    Ruth Tytherley / Reply
    • Dear Ruth,
      So sorry to hear about your mum’s death after a severe stroke, and that her care was not the best. Good palliative care can usually really help even when things are so sudden and uncertain, and it seems the doctors and nurses did not have this approach. I am a real advocate for palliative care as early as possible, as soon as the real possibility of dying occurs, starting with a series of good conversations to share what is likely to happen and together planning for the possible eventualities. The actual process of communicating and planning is so important for quality care.
      Sincere condolences,
      Scott Murray

      Scott Murray / (in reply to Ruth Tytherley) Reply
    • I share your sentiments exactly as my mother aged 80 is in such a condition as of today, thank you for your words.

  6. We will be bringing my 80 year old mother home from the hospital next week. She suffered a blood clot on the brain and a seizure. She is still not very responsive but does know what you are saying and can do what you ask like squeeze your hand lift leg… Those things. The hospital suggested a nursing home, but no one in our family wants that.. we want her to be at home for whatever time she has left. Maybe that’s selfish I don’t know, but she would never want to go to a nursing home. We keep praying to see some type of improvement.

    Windy / Reply
    • I am going through the exact same thing right now.. Father is 82 same in every way that your mother and you are experiencing. They recommended long term care in a nursing home.. I honestly feel like this is a huge scam. They want the house and control of his income. I don’t think so. He wants to be home and we are going to try our best to take care of him at home!

      God bless you and your mother! I pray she gets better and recovers every day.

      Leenie / (in reply to Windy) Reply
    • My mom has had two major strokes, she has home health care but still sleeps most of the day and all night, she’s weak, confused and has a rare form of leukemia, is sleeping this much normal, is her body just worn out?

      Linda Thompson / (in reply to Windy) Reply
  7. I’ve come to share my own (or rather, my father’s story). On July 18th my dad fell ill. He came from the balcony after hanging the laundry and had trouble standing up, so my sister led him to the couch. There he started having convulsions we mistook for trembling and high blood pressure. We called in a doctor, who eventually called an ambulance. They diagnosed him with a heat stroke and after working hard to stabilize him, they took my dad to the hospital.
    In the afternoon they called to Inform he was in the ICU, connected to a ventilator. He had both a heat stroke and sepsis and they also said had they arrived at the hospital ten minutes later, he would have died as he had a strong arrythmia. The doctor said that if they didn’t call again, it meant he didn’t die. From now on, I’ll write this as a timeline of events to avoid making this comment too long:
    July 19th: My sister and I visited dad early in the morning. He had cold cloths on him to help lower his temperature, which had stabilized during the night. His skin felt cold and…sticky? They had him sedated but would make mouth movements from time to time. I was happy to see that because to me, it meant he was aware of me and my sister’s presence.
    My mother and brother visited him later, around midday. The doctor informed that they had took him in the nick of time. He was now connected to a dialysis machine too, the liver and kidneys were compromised but heart and lungs were good. They also took off the cold cloths. The doctor was more or less optimistic, but warned there could be some brain damage.
    July 20th: My sister and I visited dad again. From that point on we decided to visit at midday to get the doctor’s update. We were left alone with him for a few minutes before the doctor came. It was the one from the phone. The tube my dad had going up his nose the previous day was gone, so we took it as a sign of improvement. When the doctor came and we told him this, he said, “You think he’s better? No…he’s doing much worse.” Then the doctor proceeded to announce that my dad was having a multiorganic failure and he probably wouldn’t make it to the next day. A nurse had to bring in a stool because I almost collapsed right there. I asked my dad to not leave us and to stay strong. When I held his hand, he squeezed it. My sister and I left feeling devastated and began telling our extended family in case the worst happened.
    July 21st: We went to the hospital once again. I honestly feared walking into the room and finding his dead body. They didn’t call us, so that must have meant he pulled through the night. However, they didn’t call us to warn his condition had worsened, so I didn’t know what to expect.
    But once we entered the room, we found our dad with his eyes OPEN. I was scared at first but, once my sister and I stood next to the bed, his eyes came alive. They were glossy and full of life, he answered us with eye movements and squeezed our hands when asked. The doctor from the previous day was shocked but relieved. The organs that were giving up now were suddenly improving, even the ventilator was at a lower capacity.
    They gave him a blood transfusion after some bleeding that came from his throat and we wondered if the transfusion contributed to his improvement. He had extreme anemia due to an inability to absorb iron. That day, my sister and I left the ICU feeling overjoyed.
    July 22nd: That day my brother went instead, accompanying my sister. She texted saying my dad was “super awake”, he even tried getting up upon seeing my brother! The doctor informed that his organs continued to get better, so things were looking up. I hoped to have my dear father back home soon.
    July 23rd: I went with my sister this time. That day my dad was asleep, but he did new things: he did swallowing motions and rolled his shoulders from time to time.
    A different doctor came in. He said that, while the kidneys and liver continued to get better, they were worried that he didn’t wake up. He was no longer sedated at that point. We explained that for the past two days our dad had been blinking and holding our hands. The doctor said it was “good, but not enough.” The doctor explained that if he continued like that by Monday, they’d perform a new head CT (they did one on the 18th and it showed nothing abnormal). Despite that, I still had hope that my dad would fully recover.
    July 24th: We were unable to visit our dad that day due to the train schedule. We already told our dad about it the previous day. The doctor called for the daily report and there were no changes, they’d probably perform that head CT the next day.
    July 25th: A nurse called summoning the entire family as they had performed new medical tests and had “important information”. That scared me. When my sister asked if it was bad news, the nurse didn’t want to say anything. My mother couldn’t go as she had bronchitis, so one of my aunts (dad’s sister) went instead.
    Once there, the doctor led us to a free room. He started saying that the kidneys and liver were almost fully recovered. I discreetly pumped my fist in celebration. On the way there I convinced myself that they only wanted to tell us that everything was normal and we only had to wait for him to fully wake up and it seemed we were heading for that outcome.
    However, the doctor’s words slowly took a different turn. Although gently, he explained that upon doing a head CT and MRI, they found out that my dad had a brain stem stroke. It had irreversibly damaged the midbrain area and he was basically brain dead. That’s when he said what we all were dreading: as there was no hope of recovery, the only option was taking him off vital support.
    The doctor was visibly upset. Had it not been for the stroke, my dad would have been ready to be moved to a regular room in the next few days. We decided on terminating vital support on Wednesday with me, my siblings, my mother, and my dad’s siblings accompanying him until the end.
    That day’s visit was so sad. Despite what the doctor had said, our dad opened his eyes once my siblings and I talked to him. He even turned his head to the side. Was it really as bad as the doctor said? I didn’t want to believe it.
    July 26th: After an upsetting talk with the hospital’s social worker to make funeral arrangements, my siblings and I went to see dad. An uncle was with us too. That would be our final visit before what would happen the next day. We all were still trying to accept what was coming.
    All the previous days I walked into the room just fine no matter what but that day…something froze me at the door’s treshold. At that moment I thought it was the surprise of seeing my dad mostly uncovered, but now I think it’s because I could feel the presence of death.
    I didn’t like the fact my dad’s head was in the exact same position as the previous day. It wasn’t a good sign. The pained grimace he made wasn’t a good sign either. We talked to him as usual, we tried to feign normalcy. However, something compelled my siblings and I to tell our dad he was the best dad we could possibly have and that we love him.
    We did the right thing. Fast forward almost to midnight, my sister received a call from the hospital. It was one of the ICU nurses. “You have to come,” she said. We thought that meant my father was agonizing and we soon headed to the hospital with the idea that we’d be able to be with dad during his final moments. Two of his siblings would be with us.
    We arrived at the hospital and after a few minutes, the doctor from Saturday came out. He was serious. The man said, “[Dad’s name] couldn’t take it anymore. He has passed away.”
    My sister asked, “Right now?” The doctor answered that he passed an hour ago, so around the time the nurse called. I would be angry at the nurse’s vagueness if it wasn’t for this: around 9PM dad started feeling worse. They tried to stabilize him without success. After seeing that nothing could be done, the nurses decided to accompany him until he passed.
    I wanted outside the hospital accompanied by my uncle as everyone else said goodbye. Neither of us could bear the idea of seeing his dead body. I find comfort in knowing I told my dad everything I had to say. Maybe I had a feeling he would pass that day.
    My family and I are still trying to accept what happened. Dad was an amazing person and he didn’t deserve to go this way. He was only 64. Had the doctors performed a MRI on the 18th instead of waiting a full week, maybe he’d be alive now.

    C.S / Reply
    • Hi C.S.,

      I’m sorry to hear about your father. My dad recently passed away and we share some similarities.

      If you read this, can you email me at


      Jeannie / (in reply to C.S) Reply
  8. Hi everyone, im so happy to know there are other people who are living with a loved one who is trying to live with a massive or severe stroke. My father had a stroke on May 9th, typical this stroke left his left side paralyzed. The following Wednesday he suffered a worse/massive stroke that gave him seizures and now fully paralyzed. I didn’t want to see my father suffer as i saw with my own eyes the difficulties he was already facings from both strokes. My family had to make a fast decision to allow the doctors to perform brain surgery. I didnt want the surgery and preferred to just make him comfortable and give him stroke/brain medication until he passed. My brother felt the surgery would be dads beat bet. I gave consent to the surgery and now my father seems more out of it than he was previous to the second stroke. I can tell he is suffering and wouldn’t want to live the rest of his life trapped inside his own body, unable to move or speak. As I read about life expectancy after a massive stroke i feel my decision for brain surgery was the wrong choice. Now i have to live seeing my dad in pain. Nobody knows what will happen next. Thank you everyone for your stories and listening to my story. Love for both victim and families of stroke victims.

    Marla / Reply
    • Dear Marla

      thank you for sharing your heartbreaking story. Your dad is in my prayers.


      Osman / (in reply to Marla) Reply
      • My condolences for the loss of your awesome Father❤️ thank you for sharing your story 🙏🏼

        Leenie / (in reply to Osman) Reply
        • May 2023.. 76 year old mum in these dia circumstances, begging to die:(
          Double pneumonia and massive stroke,can’t talk, walk,toilet ,bed bound for 4 months. Actually seems more alert n comprehending what’s being said in this last week.
          She is in purgatory bless my lovly mum.
          When she was first admitted she was put on an antibiotic that gave her wretching violently. When she also go a urinary tract infection they were going to give her it again, she was so weak it would have finished her off and I wish I hadn’t told them and let her go…:(

          Bev / (in reply to Leenie) Reply
    • Marla, you can only do what others in the family wanted, else you would be carrying all of the blame of how your dad would be or not be doing for the rest of your life. Just know you did the best you could in agreement with the rest of your family (for your dad) that you could do at the time.

      J.M. / (in reply to Marla) Reply
    • I have to see my mom in pain after a massive stroke, left side paralyzed as well, unconscious, on her deathbed and it’s worse than death. Your choice for brain surgery was made with good intentions and impossible to know the outcome. I often feel that if I made different choices my mom wouldn’t of suffered the major stroke. The hospital sent her home after a mini stroke about just 12 hours later and she wasn’t doing that great but able to respond. Less than 48 hours later she had a massive stroke, this time it was a death sentence.

      Ed / (in reply to Marla) Reply
    • My 81 year old mother suffered a stroke mid Feb, 2023- she has advanced diabetic neuropathy, has had 2 spinal chord surgeries (1992 & 2009); the 2009 surgery resulted in her left side specifically her hand became useless and atrophy set in. MRI show she had a previoys stroke that nobody knew about. By 2020 she had suffered numerous falls and broken bones, shoulder, foot, ankle, etc. her knees are also bad.
      The Feb stroke was left side blood clot and took out her right side. She has done a month of in patient rehab with very little improvement- cannot walk, cannot stand up or transfer from bed to wheelchair without full assistance. Doesn’t feel or know when she needs to pee or poo so she is full time diapers/incontinent. She is now able to feed herself by using her two fingers on her dominate right hand. Progress! Started her on gabapentin the last 3 weeks which has helped-she is sleeping better during night and not a ball of anxiety and agitation. I’m her full time 24/7 caregiver at home/ she has no long term care insurance- she suffers edema on her right ankle if sitting up too much during day – her stomach is swollen a bit-on a ton of meds now for high blood pressure, blood thinners etc.
      doctor at IPR said she will never walk again and should look into palliative care- my brother and I suspect she may not live more than a few more months- she has a bit of short term memory issues….trying to prepare – I hate to see her so disabled and she has no quality of life…I have been out of work now for 2 years taking care of her – I need to get back to work – if she is still alive over next 2-3 months, we are planning to relocate to TN and look at assisted living- cheaper than CA where I’m from or Oregon where I live with her now. Strokes are debilitating but difficult to plan because unlike cancer, nobody knows how long they will live!

      Lu / (in reply to Marla) Reply
    • My daughter started having small strokes in 1999! The only problem was her left hand and slight dragging of her left leg! This continued a few years until another larger stroke in 2014! She came to stay with me! It was hard, but did my best to take care of her, even getting her a scooter to get around outside! I discovered she was hiding pills and questioned her! She said it was her body and could do what she wanted! After that she’d grab a knife and threatened to use it! I was scared, so I called the crisis team! 2 nurses came, couldn’t calm her or reason with her! An ambulance was called and admitted to a mental health ward! She didn’t want any information released to me! She was released when she gave a name and address where she could stay! A friend picked her up and took her home, almost 300 miles away! Not a month later, got a call from the hospital where she was! She had a massive stroke and the Drs said she had a very small chance of surviving! I had her transferred to a nursing home where I lived! This was January 2015! It is Now June 2023! She has been in the nursing home over 8 years and paralyzed from the neck down! She has a DNR, sleeping a lot refusing food or liquids, and has had a body rash for months! They put in an IV saying her sodium level was off! Now the want a feeding tube! She will be 58 in August! The nurse says the IV and feeding tube will improve her quality of life! She has had no life in years! Am I wrong to say no! I know she doesn’t want to live like this, she has lost a lot of weight but still weighs more than when she was admitted! Let her be, I know she has given up! She was so strong to hang on this long! Pease is what she needs!

      Sheryl Ellsworth / (in reply to Marla) Reply
  9. I have read all the comments in this thread, because I have been wondering what it is like for families who suffer strokes. I am thankful for the intensely honest sharing that is posted here. When I start to be afraid of what might happen to me as I enter elder years, or more precisely, how I or my loved ones will afford to pay for what happens as I die, or begin to die, I focus on knowing that death is an integral, creative part of life. I know that physical life extended at all costs, just because we think we can, does not mean we should. Making my dying time as meaningful with the love and joy of my connections as I can, in the in the time left to me, will be what extends my life beyond my physical presence. We need more of this kind of sharing about our experiences and reflections to shift our cultural isolation.
    * * * * * * * * * *
    Stars are born, and stars die. Along the way these stars fashion the very atoms of our bodies.
    — Is this a universe we say Yes to?
    Mountains are born, and mountains die. Along the way these mountains create the particles of sand and clay that blend with dead plants to become soil.
    — Is this a universe we say Yes to?
    Glaciers come and glaciers go. Along the way they grind rocks into new soil and sculpt ponds and lakes.
    — Is this a universe we say Yes to?
    Species come and species go. Along this odyssey of evolution, marvels emerge: eyes, limbs, feathers, song, terror, love.
    — Is this a universe we say Yes to?
    Cells are born, and cells die. Along the way, the winnowing yields fingers and toes, fins and wings, and the miracle of healing from injury.
    — Is this a universe we say Yes to?
    Forests of cells are born and die, but not let go. Along the way, these ancestor cells stiffen into wood of uncommon strength and endurance, allowing the living green cells to reach for the sky.
    — Is this a universe we say Yes to?
    Baby animals are born in abundance, and myriad plant seeds are cast to the wind. Along the way most of these children become food, supporting the vast ecological web of life.
    — Is this a universe we say Yes to?
    Humans are born, and humans die. Along the way each may blossom with love, and accrue wisdom as elders, and then by their passing make room for generations of children now and forevermore.
    — Is this a universe we say Yes to?
    Ideas are born, and ideas die. Along the way they nourish the human journey, onward, inward, and outward, in an arc of wonder that now embraces a hundred billion galaxies.
    — Is this a universe we say Yes to?
    Love comes, and love fades, dies, or endures. Along the way we experience the richness of existence, sanctified by laughter and tears.
    — Is this a universe we say Yes to?
    Each of us is born, and each of us will die. Along the way our awareness of death urges us to live fully, to give fully, and to take not one moment for granted.
    — Is this a universe we say Yes to?
    by Connie Barlow, from ‘the Great Story’ 2005

    Karen Harding / Reply
  10. […] Unfortunately, stroke remains a devastating disease. Despite the best medical care, as many as 4 in every 10 patients who suffer a stroke die within the first year, with many more left to learn to live with long-term disability. Providing support to patients and families with difficult decisions about treatment and care after stroke is hugely important, and is discussed in more detail in an Evidently Cochrane blog on Living and dying well after stroke. […]

  11. I had a left side stroke Who is it a year ago three days after being hospitalized for Covid and my believing I was going to die from Covid until I prayed and found out through my faith that it wasn’t the time.
    The day after my prayer three days after the stroke the Doctor Who care for me in the hospital suggested that I receive Covid plasma or I would die.. I had to sign off for it though because he told me 25% of the people who receive it, have a stroke.

    he believed that the Covid plasma was it only thing that could save my life because my problem was that 40 years ago I had a ruptured spleen and though I was still alive and seemingly healthy otherwise, my body did not have the ability to create antibodies from this kind of virus soon enough to save my life.

    within hours after receiving the plasma and by the next day my kidney rate went from 16 all the way up to pass 60 within two days max. I felt amazingly well and it was able to be discharged however I had no place to go because I could not call and I would not go back to the place of the careless person I lived with that gave me the coronavirus and I would not go anywhere else where I’d be around people because I was older and still needed care and I wanted to live out my quarantine which at that time was about 10 more days. There was only one caregiver in my town that would except anybody that had Covid and so I went there. The problem is that I had a stroke a day after going to that facility and they did not have caregivers or proper equipment there. It was basically a home where people go who have no place else to go and they take your Social Security and give you a small pet some money left and the rest are good to go. That was fine at first but I was frustrated because I didn’t get therapy any physical therapy except for 215 minute walks and 30 days and I was there. Not only did I discharge myself because they were doing absolutely nothing for me I even made my own beds lol I did everything else for myself and I was beyond that Covid transfer time, but I also had to do my own attempt to Physical Therapy which was having them put me in a transport chair and me using my legs and arms and me using a gait belt in my bed to move my leg and using my cell phone as a good weight for working my left arm. I did begin to get somewhat better but I still didn’t have the proper therapy because they did not have the help. This facility did not pay the workers much money and the workers that were working wanted to get paid the best they could and in my opinion should care. In my opinion, that $600 or $300 extra week should never ever have been given to anyone except the people who are Frontline workers and gave their lives and put everything at stake, no matter how much money they had already.

    I think all of you realize the problem that those decisions made with people. Many of them quit their jobs to get it and many others are angry when it stopped without thinking about how it could’ve benefited them. I had a personal experience with that by having a sister who had a step grandchild who made $50 a week at McDonald’s by working one night for a few hours while going to school and when he lost his job due to Covid, he not only got the $50 back in unemployment, but he also got another $600 a week for the whole period of time they gave it and he went out and bought a car with that money and destroyed it within two weeks where it was totaled almost killing himself and other people in the car. He became very belligerent didn’t want to listen to anyone because he thought he had money and can do whatever he wanted and that goes to show how these decisions really affect it the Americans who are given this free money, for no reason at all !

    The pandemic was not the people’s fault it wasn’t even the leaders fault and if there is any fault at all, we still don’t know what it was, however it’s not what happens to us but it’s how we handle what happens to us that makes a difference in our lives. We could have grown from that experience but we have not so we will continue on suffering until during this lifetime test, we are able to learn the lessons that we were sent here in this life to learn. On an eternal basis, I’m sure things will work out by where they are meant to be but there is so much unnecessary hardship going on these days because of the decisions that people made that were supposed to be trusted leaders .

    Back to the stroke situation, I have finally been able to get in to a good physical therapy facility because of all the other situations I had to deal with from having long-term cove along with my coming back from a stroke.

    it takes a great deal of effort and desire to beat the odds of what others have experienced when they have a stroke. Much of it is whether we have the world to live and whether we can find purpose in our life beyond that process circumstances that will benefit not only us but many others in our family.

    beating the odds of having a stroke isn’t always easy, but it will always be better for all of us to fight and live and it would be for us to just give up and die, just because we are old.

    good luck on your journey and remember, life is worth living. If you get depressed, pull up some clean stand up comedy that you can relate to and that laughing you do will help you more than you’ll ever know!
    stay off of ramaging around the Internet. If you wanna learn something worthwhile, go to your hospital and find a research’s library where they will have proper correct and researched information for you to view and learn, knowing that it is current because they keep it current and it is valid information at the time.

    May I recommend a book for you to read that will give you amazing insight if you find yourself frustrated with your children or your parents or your grandchildren or anyone. You may have read it before. If not, no matter who you are what age you are as an adult or what you’ve experienced in your life, this book will give you an amazing perspective that you didn’t know you could have !

    It is called “Hidden in plain sight”
    it is easy to research online as busy only book with that title.

    Have a beautiful Happy Easter tomorrow and a wonderful life!

    gmap / Reply
  12. I read all these comments with lot of apprehension, hope, relief and a gamut of feelings. My mother had an ischemic stroke and was in hospital for 4 weeks before coming home a week ago. She has blockages and reduced EF. She is not on any tubes anymore but right side function and speech are impaired. She was doing well for a few days and now not eating much and seems out of it. I am not sure where this is going but I feel she may be feeling the loss of her prior life more acutely in her home. I am second guessing every single decision I make and it has been very very stressful. We got a PT but she has no energy or interest. Praying and trying to stay positive.

    Sandy / Reply
    • Just wanted to update that she went back to hospital (after being home for 10 days) due to respiratory infection which turned into sepsis and she passed away 2 days later. My brother and I had to make a decision to not put her on ventilator. We will forever miss her dearly, but I am thankful that she did not suffer long. She told me many times “not to put any tubes in her to keep her alive”. And, I wonder how can anyone know when it is that time and you are facing death, what would they want? Still, I feel at peace that we respected her wish that was expressed when she was able to convey what she wanted. Love you forever and missing you every minute.

      Sandy / (in reply to Sandy) Reply
      • I quick death when in that situation is the best option. I had a aunt that suffered for 6 weeks with tubes to keep her alive before we decided it was too much and we had to let her go. Less suffering is better.

        Ed / (in reply to Sandy) Reply
  13. My father recently suffered from a series of about 10 strokes in under 30 days. The first ones scared us all, the last ones out him in the hospital with ride side paralysis, some short term memory damage and speech/swallowing issues. Frankly, my brothers and mother and I are trying to keep him positive and focused on his recovery….while also discussing the fact that we don’t know if he will make it the year. I do not know how to balance looking toward the future and staying positive, with being realistic and knowing what we need to prepare for. With him having so many in such a short period and continuing to have I think TIA’s, we know time is short.

    Jeremy / Reply
    • Jeremy my mom had a massive left brain stroke October 2021
      If you need any support I can be here as I’ve gone through and continue to try to figure it all out

      Kelti Rees / (in reply to Jeremy) Reply
      • I am so sorry. My dad had a massive stroke nearly 1 year ago. He is now 82. He cannot walk on his own and his quality of life is severely affected. Unless he continues to improve, I don’t know if it was worth it for all us, but most importantly, him. Its been hell for him and all of us. Best of luck in your decision.

        Carlo Agostinelli / (in reply to Kelti Rees) Reply
    • My wonderful father had a large stroke 4 days ago. Was in seeming perfect health before this. Despite world class medical care, there’s just nothing they can do for him to gain any meaningful recovery. The doctors have withdrawn treatment and keeping him comfortable now.

      All the doctors and nurses here have explicitly told us that they would not want treatment to continue after a debilitating stroke. My father was a doctor and these were his wishes also. There are really some things worse than death and are seeing this with our own eyes. Everyone situation is unique but in many cases, continuing treatment after large strokes prolongs unnecessary suffering for the family and patient. As much as we would do anything to help our beautiful father right now, we have to accept the damage the stroke has done and let him go. It’s very hard.

      Dave / (in reply to Jeremy) Reply
      • My Mom just had a massive stroke. She was found unconscious, and still is. Her nih score is in the 30s. She is now in hospice. Isn’t there anything we can do to end this?

        Tammy Espin / (in reply to Dave) Reply
      • My mother is in the same situation. We withdrew treatment two days ago. How long did your father live after his stroke?

        Kate / (in reply to Dave) Reply
  14. Thank you so much for all the posts from lovely people who have gone through similar experiences to myself who was a full time carer of my beautiful beloved husband who passed on the 25th January 3 days after my 72nd birthday. I loved him so so much and have now developed severe depression and find life so hard now. He suffered a major stroke on the 18th January almost 19th January as the doctor thought he may have had it during the night while asleep. He was rushed into hospital in the morning and spent over 8 days in hospital and then ICU. He passed with a nasogastric tube, morphine for pain and am so so heartbroken. He was my everything I loved him so very much and miss him terribly. Wish sometimes I had gone with him.xxxx Liz.

    Mrs Liz Mullett Wales UK. / Reply
    • Thank you to everyone and feel so much for you all. Love you and understand your heartache.xxxx Liz Mullett.xxxx

      Mrs Liz Mullett Wales UK. / (in reply to Mrs Liz Mullett Wales UK.) Reply
      • Don’t feel guilty. Your husband had the best outcome. My brother had a massive stroke in August 2021. He is unable to walk or talk and is bedridden. His mind is mostly there which is the worst part cause he knows what he has lost and where he is. .. he is in living h*** and has no control over
        it. I am helpless to help him. I was you continued healing in your mourning process.

        Cheryl hopper / (in reply to Mrs Liz Mullett Wales UK.) Reply
        • My dad is exactly the same. He can’t talk or walk and is double incontinent, but he shouts all the time at nothing and all hours of the night. He is home with me and my mum, as we can’t afford to put him into care, and he has carers come 4 times a day, but it is soooooo hard for my poor mum. It sounds horrible and I feel guilty for even thinking it, but sometimes I think he would have been better off if we did not resuscitate. Sorry if that sounds evil, but it is honestly how I feel sometimes. I love my dad to bits, but this isn’t my dad anymore 😢

          Jamie / (in reply to Cheryl hopper) Reply
          • Hi Jamie, i totally understand what you are going through and i feel your pain. I feared my dad would go through this and it would be so hard for us to bear seeing him in such a helpless state. He had a massive stroke on the 29th of March and died a week ago on 2nd April. Painful as it is, I believe death was the best outcome

            Zanda / (in reply to Jamie)
    • my dad had a severe stroke last September and since then his right lung hasn’t been clear. we’ve gotten it drained via thoracentesis (bloody fluid) but the doctor wasn’t able to get the complex pocket of fluid under the right lung so he had to get a chest tube put in a month later and the fluid had almost doubled just in that one month(over 1000ml). both two times its come back negative for cancer cells and they don’t think its due to heart failure. his lung Is now very scarred and deflated and they are suggesting a surgery to actually go in and repair the lung and that would be the only way to know for sure what is causing the rapid fluid build up- cancer, etc. Is this normal for post stroke? He the first few weeks after the stroke he was fed via nose tube and then went to a mechanical soft diet. But the xrays were showing some aspiration from the beginning. He is weak and has not gained any function of the left side yet. Im nervous that if we decide to go through with the surgery it puts him at risk for more complications since he is so fragile. It’s so devastating to see.. he is only 68 and was so active and independent before. :(

  15. I was taking care after my mother for seven years, who suffered from a major ischemic stroke in 2015, being 73 at that time. She was alone at home when it happened, probably she was lying on a floor for more than a day. Before, she was an active and independent person, the stroke left her unable to speak, to write or walk, the entire right side has been paralized. Out of the hospital, she has been moved to the rehab for 4 months. After that she was able to stand for like maybe a minute, mostly on one leg, when I was holding here. I was teaching her to nod and shake her head for yes and no and it was most of the communication we had. She could also draw some cartoons with the left hand (she was a painter) and I had to guess the meaning. The worst thing was when I could not understand what she meant, she was starting crying hysterically then, ant the communication was over. It seemed that she understood most of the things that I was saying. It turned out, that she could sing, just melodies, from which I could guess the mood. She like the classical music, and was able to turn on CDs on her own, opening with the left hand and the teeth…I started taking here to the opera, which she loved, we were like 50 times in the opera together. There were the caregiving ladies living with us, also some short stays in the nursing house in the meantime. At the beginning it looked that it was the end of the world. There were several stairs to the house where I lived, and it was a question how to do it with the wheelchair. I bought a powered stairclimber, it was however very slow and strapping the wheelchair to it was annoying. I figured out a better system- I strapped the windsurfing harness to the wheelchair with lines and climbing carabiner,it was much faster to pull the wheelchair with the muscle strength this way.
    There was some life anyhow. It turned out that she could stand a short flight (3-4 hours) quite well, so I decided to take her for holidays, as she loved to travel before. Actually, at first I was scared to go anywhere. Things have changed after we had a car accident when I was driving her to the dentist. The car was totaled, it looked horrible, luckily we had just few minor scratches. After that, I said we had nothing to loose and became more courageous, and we kept on travelling, visiting Greek islands, Egypt, Israel, Italy, Tunesia… We also used to go the the museums and axhibitions quite often..My Mom passed away from a heart failure in November, shortly before her 80th birthday. We still managed to go to Sicily in September for two weeks, where I rented a car
    and drove around the island.

    Blazej / Reply
    • Thanks so much for your story. My husbands stroke was 10 months ago and we have cancelled most travel but your story gives me hope to carry on our plans. Live life while you can. Thanks for sharing.

      Debbie G / (in reply to Blazej) Reply
  16. My favorite person and best companion had a stroke during the night nearly two months ago. He was strong and stout-hearted and since then he has been hit with one thing after another – most lately COVID in his already worn out lung that is also full of pneumonia. He is deteriorating and have asked for a DNR. We – his friends and family – miss this magnificent man so much. We don’t want to give up nor do we want him to suffer. I was looking for resources to deal with the grief-fueled disagreements that have bubbled forth re: his care, asking for his input, etc. When do you give up and grieve the loss and when do you hold onto hope knowing that both ends will be terribly hard for the stroke survivor and the people who love them? I know this question is going into the void and with it am sending hopes for peace and resolution for all who wander through here.

    Allie / Reply
    • Dear Allie,

      We’re so sorry that you are in this devastating situation. We most often leave it to others who have had similar experiences to read and comment, if they wish, and we hope there is some comfort in knowing there are others who understand something of what you’re going through. But we wanted to let you know that you aren’t asking your question into a void. There are, of course, no easy answers to your profound question, or to the other questions that you and your family and friends are having to address now. But we hear you. Others wandering through will hear you, and you may have helped them to frame a question they hadn’t quite brought into being. You, and all the others who have shared their experiences here, have offered something too, and in this way made it a place where, perhaps, for a moment, people can feel a little less alone. We wish you strength and peace for whatever lies ahead.
      With very best wishes,
      Sarah and Selena [Editors]

      Sarah Chapman / (in reply to Allie) Reply
      • As a stroke physician, I have been so moved by your stories. Severe stroke is devastating for patients and families alike. I am passionate about improving how we care for patients and families affected by severe stroke. We have a research project starting shortly to look at how we might do this-if anyone is interested in taking part, please do contact me.

        • My mother had a massive ischemic stroke in May 2015. An MRI showed she had a previous “minor” one, however none of us knew. She showed no signs. We didn’t think she would make it out of the ICU. She did and went to rehab, however never gained use of her right side and has aphasia. My dad has been her primary caregiver outside of any rehab. He takes her to all medical appts and found how horribly she neglected her own care in the years up to her stroke. Her teeth had to be removed and she had major back surgery for osteoporosis. She was about 80-100lbs overweight as well. Fast forward to now, she is still with us physically. Her mental state has greatly declined. Talking to her is like talking to a baby. She gives a blank stare when asked basic yes & no questions. She can feed herself but will keep putting food in, without swallowing anything, and will choke and spit it out much like a child can do.
          It’s absolutely devastating and I know she never wanted a “life” such as this. I don’t know what’s more cruel, having a stroke victim pass right away or linger on for years and require constant care. I’ve read so many studies to say the morbidity rate increases with years after strokw, however it seems my mom drew the short straw of the most suffering and humiliating timeline for her stroke. I feel like I lost my mom 7 years ago. I just pray for whatever is best for her and all other stroke patients, when no real recovery ever occurs.

          Stacey Jones / (in reply to Gillian) Reply
        • Hi Gillian
          My name is Janet and my 91 year old mother has suffered a major stroke in January 2022. I an her main care giver and would be interested in sharing our story. Please contact me at I look forward to hearing from you.

          Janet Payne / (in reply to Gillian) Reply
          • Hi Janet,

            Please contact Gillian on – I’m sure she’ll be pleased to hear from you. Thank you.
            Sarah Chapman (Editor)

            Sarah Chapman / (in reply to Janet Payne)
          • Does any specialist knowledge or have any idea of why some do recover to live a life not depending on others…my mom also had a stroke, she can not move her left side…she is 66 years old.but I do notice some improvement. Before she would try to squeeze our hand with her left hand. I could barely feel her squeeze. But now I can feel her squeezing my hand..we don’t allow her to be sad .or cry that’s a big no-no..we make her laugh. I also have met people at work who did a full recovery. At least enough to wr they don’t depend on others…my mom had her stroke three years and 4 months ago…i hope my mom also gets her full recovery…but why some do and some don’t

            Anita / (in reply to Janet Payne)
      • Hello Sarah. Our mother had a stroke in 2018 and she remains bed ridden and we moved her in with us for total care. My husband, a nurse, had to leave his job to provide her care full time. She is immobile but mostly alert. Please do let us know if there is anything we can do to help grow the body of knowledge around strokes, stroke treatment, and policies around stroke and elder care (of which, there are shockingly few).

        Angie Bowers / (in reply to Sarah Chapman) Reply
        • Dear Angie
          Thank you for sharing your story. Severe stroke is devastating for patients and family alike.
          We have a just started a research project to develop better ways to share decisions and communicate with patients and family affected by severe stroke. If you would be interested in working with us (five on-line workshops with stroke professionals, stroke survivors and family members), please do get in touch with me at; I would be delighted to hear from you.
          Kind regards Gillian

      • We are here now. It’s pure hell between Hope & Reality. Two major strokes in four days, a brain bleed or infection? Who knows? More tests and the medical things are so hard to understand. We can’t even visit due to Covid. I’m just his biological sister with zero rights. Except the right to grieve and cry every night for my big brother who’s never going home.

        Rebecca Luke / (in reply to Sarah Chapman) Reply
  17. June 28th my mom that is 68 fell at work and hit her head. She was found passed out slumped over er her patients toilet. She was rushed to the er where they said she just had a stomach bug and sent her home. I finally talked her into going back to the er the 4th of July Al where they found a brain bleed she was rushed into surgery but also had a stroke. She has lost all movement to her right side and he her legs, she barely talks and hardly remembers me. I have her in long term care getting the best care possible and my family rotates seeing her daily. I’ve really struggled with everyone asking how she is doing because I have come to terms my best friend is never going to be the same. I will never have another conversation with her that she will talk back to me and she most likely will die soon. How do you tell people that and still have hope? To watch her No be able to move or feed her l self not be able to swallow something and her have to wear diapers has been absolutely heart breaking.

    Amy / Reply
  18. My mother had an ischemic stroke September 23, 2020 that affected her right side. We know she has a 50% blockage in her carotid artery that the doctors are controlling with medication. She’s a type 2 diabetic where I think the majority of her health problems have originated. She has gone through therapy but has made very little improvement. She can eat, no trouble swallowing, but I do not think she will ever walk again. She only gets in her wheelchair to eat and wants to go back to bed. She’s had chronic UTI’s and constipation. My poor dad is her full time caregiver and I know he’s getting worn out, but still thinks she can recover. I wish doctors would be more forthright about a person’s situation medically so everyone can prepare and maybe get the palliative care they need.

    Beth Davis / Reply
  19. My son had a stroke on the 29 th July 2020 never regained consciousness l wonder if more could have been done had the stroke in the Basel ganglia of the Brian

    Geraldine / Reply
  20. If we had known all we have learned in our own we would have never encouraged our son to have brain surgery after his stork. At 37 a young man with a BS. BA and a PhD in chemical engineering has been reduced to not able to work and enjoy his life as he knew it. Not having many seizures been on a respirator and keeps on getting worse. He’s had 3 years of pure hell. Sorry to say. He has of course has mental health problems that have gotten much worse along with the physical problems. He asks why and he still knows from his education why. Medicine is great but I have found they want to keep trying everything under the sun to no avail. He has finally said no more. I am tired.

    Crites / Reply
    • Hello, I was nearing peak of my career, RN, BSN, MSN/Ed, waiting to finish PhD. If you look at me you could not tell I had a stroke with TBI, memory bad. Lost hope I was to teach Nursing as I never had a male RN Professor. Life is hard but Psych and medicine may help a little

      Jesus Lopez / (in reply to Crites) Reply
  21. My ex husband was in ICU on a ventilator. He had had COVID but was testing negative at this time. Lungs slightly improved Saturday night then during the night he had a massive stroke. The neurosurgeon told us it wasn’t survivable as about 60% of his brain was gone and he showed us the brain scans. They allowed my adult children to go to him, and they took all the machinery away. The children sat and talked to their Dad and held his hands as his body gradually failed. He died Sunday evening of Valentines Day 2021. If he’d lived by some miracle he would not have been able to do anything for himself, wouldn’t have known us, would’ve been blind, deaf, etc etc. We are heartbroken. 💔

    KE / Reply
    • So sad. My husband died from 3 strokes 1 massive on July 28, 2021. Strokes are vicious they take parts of the brain a little bit at a time, until there is no chance for survival. He didn’t want to live like that, there was going to be no quality of life. I know it’s only been a few days but I miss him so much.

      MA / (in reply to KE) Reply
      • So sorry for your recent and devastating loss…
        Sending very best wishes,
        Sarah Chapman (Editor)

        Sarah Chapman / (in reply to MA) Reply
  22. My 73 year old mom who was vibrant and bounced around like the energizer bunny had a massive ischemic stroke with a full carotid artery blockage on Dec 18, 2020. She had the stroke during the early morning hours, so the ER could not give the clot buster without risking killing her. She was taken to a level 1 trauma hospital in Nashville, where a neurosurgeon was waiting for us. He did a procedure through her groin to clear the blockage but couldn’t because it was a total blockage and if He removed it, it could blow out the artery causing her to bleed out. I watched her deteriorate slowly, going from being able to talk slurred to not at all and losing feeling in her left side. The second day, her brain swelled to the point of needing to remove part of her skull to relieve the pressure (craniectomy). She was on a ventilator for a few days as well as a feeding tube in her nose. We didn’t get much response from her and the neurologists were suggesting Hospice or palliative care as they had not much hope of recovery. Fast forward to four months later and Mom has had her skull cap replaced and has been in a skilled nursing home to do physical, speech and occupational therapy since December 31. She can talk, mostly in jibberish but if we tell her to slow it down, we can understand most of what she says. She still has limited feeling on her left side and incontinence, but we still have her. I know she wouldn’t want to live this way so I’ve been researching options. I found a doctor in Boca Raton who performs experimental perispinal injections of etanercept, why is having miraculous results in some patients. If it worked on my mom, it would be $8000 well spent plus a bonus mini vacation to Florida. We still have more therapy to try before making the trip.

    Dawn / Reply
  23. My father 63 had a stroke .he was taken to hospital after three days.and scaned stroke after two days. Now he is on aspirin . But we couldn’t give strotic tablets .vi don’t know what I should do.

    Dibya / Reply
    • I am my 82yr old mom’s caretaker. She first became ill 5/21, she was diagnosed with End Stage Renal Failure due to Lupus Nephritis. She began dialysis but her health continued to spiral downward. The illness affected her mind causing her mild dementia to worsen. Oct 25, 2022 she suffered an Ischemic stroke. We found out that she had suffered 2 previous strokes that we didn’t know about and this stroke had wiped out the entire right side of her brain. This caused dementia to consume her. She could still speak and walk but has now been reduced to diapers and can no longer write her name. And now this past week (2/15/22) she suffered another stroke within the old stroke. She now wakes up wet, barely speaks or respond to yes/no questions. She sleeps all the time and now we are questioning when is enough enough. She signed a DNR when she first became ill and did not want to live like this. She can answer some yes/no questions, so I asked her if she wanted to live, she said yes.

      We definitely want her to have quality of life. But her doctors are now giving us the question of continuing/discontinuing dialysis and my siblings and I do not know what to do. In the meantime we are going to give her some time to heal and research and read a lil more.

      Lucretia Ayers-Harley / (in reply to Dibya) Reply
  24. My mother 72 had a bad left brain stroke March 8th 2021 we called 911 almost immediately but took them about 30 mins to get here. When we got to the hospital they wanted to take her in to try get the clot going in her groin. Doctor said he could not retrieve the clot he kept trying and made a hole and was afraid he made it worse. Done a scan and the bleed hadn’t got any worse he also found a aneurysm behind her eye so couldn’t try to give her the medicine because the aneurysm could become active. The day after she got the vent out she was looking around and trying so hard to speak she held the phone with her left hand to look at all her grandchildren. The day after she looked completely worse face was drooping no movement on right side not trying to speak feeding tube through the nose. Now her kidneys are failing she’s also got a infection and pneumonia she stopped breathing last night so had to be put back on the vent she’s on dialysis now we can’t go see her today it’s killing us! The doctor called just asking about DNR I’m so undecided what to do my sisters have agreed she wouldn’t want go live this way and I know she wouldn’t I live right next to her and I’m the baby of the family she and my kids are my everything I don’t know what I’ll do without my mommy. Any advice would be greatly appreciated please

    Jessica Harmon / Reply
    • Hi I feel for you, just going through this with our momma, she had a stroke last Tuesday and had been asleep since then, a family decision was made to not resuscitate our momma . She was very independent before the stroke, and we know she would not want to live if she couldn’t return to full health. She has no movement on her right side, she has lost her sight in left eye! Devastating …….BUT I rang hospital at 4.30 am this morning, nurse told me mom had woken briefly and whispered dry mouth ! I know we can’t get too excited yet ! But at least she woke and her brain recognised that her mouth was dry……never give up hope

    • Let her go. It really is the kindest thing you can do now. She wouldn’t want this, you said so. If you keep her alive against her wishes, with no q o l, that is so unkind. My mother is the same and her greatest wish would have been not to survive the stroke. She has a DNR form, but recovered. No speech, no swallow, aguratiin, anxiety, belligerence, SO thin, SO exhausted, incontinent. We wouldn’t allow our favourite pets to slowly pass in so much distress and with such lack of dignity. Let her go.

      Post stroke response / (in reply to Jessica Harmon) Reply
    • Let her go. My husband is 4 years post stroke and feel like we have beenet down by our health care system. I know my husband has to be so depressed. More than. He is leading on. The quality of life is not fun for either one of us. Yah so.e people might say atleadt they still.have their loved one but I would much rather of had my.memories with him before his stroke as my last me m ories of him than the ones I have now. Let her be in peace. Post stroke living is harder I think watching the. Go through all the doctor appointments and care and emotional stress if they don’t get better.

      Lisa C / (in reply to Jessica Harmon) Reply
    • Jessica
      My mom had a massive stroke October 2021
      Are you still caring did your mlm ?

      Kelti Rees / (in reply to Jessica Harmon) Reply
  25. My husband jimmy passed on 6/30/20 from a massive stroke. He lived 12 days in hospital unconscious. On a ventilator. When we made the decision to pull him of ventilator they removed it and instantly his vitals dropped. It was so heart wrenching watching and listening to him. Like he was just drowning. It only took a minute and he was gone. My life is shattered. The image of him dying is haunting me. I feel like its my fault . Maybe i should of gave it more time.

    Tracie Albright / Reply
    • Don’t feel guilty, you did the right thing. My husband (59 yrs old) had a massive stroke in July 2020. The doctors told me he would never walk again, would be on a feeding tube & thought he might even be on ventilator, and wanted to stop his anti-swelling meds & let him die, even though he was still talking to me. My husband told me not to give up on him, and I didn’t. 9 months later, he is still paralyzed, he has lost the vision on his left & the worst part, that the doctors never mentioned was his lack of cognitive skills and executive function skills, he can’t even work his iPhone. My husband hates his life, he wishes he had died, because the life as he once knew it is dead & gone, he is basically chair/bed bound. I wouldn’t wish this life on anyone, our once perfect marriage is no longer. As a friend said to me, if he had died, I would be able to morn, but right now I’m in limbo.
      So I’m sure right now you probably think that you’d love to have your husband back in anyway you can, but this is probably the best thing for him, as you don’t know what he would have been like. Try to think of the good times, and I truly believe he is watching over you.

      Georgina / (in reply to Tracie Albright) Reply
      • It’s such a hard decision to make when the stroke survivor was the one to say save me at all costs. That is what my husband always said.

        Allie / (in reply to Georgina) Reply
    • I am doing the same as you are right now. My husband 64 years old had a massive stroke is totally paralyzed on his right side. Non verbal but understand most conversations. Doesn’t know the alphabet or numbers anymore. Is now in a personal care home after 3 hospital. It has been a rough 6 months for both of us and all the health care system wants to know how you are going to pay them. If you need to vent please feel free.

      Helen / (in reply to Tracie Albright) Reply
  26. Stroke is one of biggest cause of deaths world-wide and it claims countless lives every year, yet, many survives as well. Inividuals should be aware of the symptoms so they can get the treatment before hand.

    Dr. David Greene / Reply
  27. I don’t know if I am comforted or further distressed having read so many of your stories. Last October my husband aged 64 had a subarachnoid bleed and a blood clot. They operated removing part of his skull. Initially he appeared to make a good recovery, he recognised me and smiled and tried to talk. He then suffered a build up of fluid on the brain and was returned to ICU. He has now been moved to a high dependency unit and is no longer on the ventilator. However he remains unresponsive fed through a tube, breathing oxygen through a tracheotomy, unable to move and incontinent. He would hate to be in this situation if he knew. He no longer looks like my husband he looks sort of sunken and very very thin. I go from being terrified he will die to being terrified he will be severely disabled. He used to make enough fuss about me putting a plaster on a cut for him. I can just imagine how much he would hate having to have someone do every thing for him. After so long being unresponsive I just cant see a future for him. When I expressed this to the doctor he said he is a young man and we have to give him every opportunity. Which I agree with but just know it has to be a good recovery or he will be miserable.

    Sarah / Reply
    • 55, just arrived home 3 weeks go, so I wish I never read this, my days are number..

      Robert Burmann / (in reply to Sarah) Reply
  28. Thank you for sharing this post and it will inspire many individuals suffering from this problem.

    Dr. David Greene / Reply
  29. My son who is 41 last week had a Mini Stroke he lost the use of his left hand and numbness down his left side. He is due to have Balloons put in BUT my grandson was visited by my late sister-in-law and Late Father-in-law…he said my sister in law and father in law were talking to each other but he couldn’t hear what was said…he said my sister-in-law looked sad. Why can my grandson see them…my son felt their presence.

    Ann / Reply
  30. Today, October 26th 2020, would have been my fathers 83rd birthday. He died this past June. My Dad had a severe thalamic stroke 18 years ago. I had just begun my 30s and now I’m almost 50. After his stroke, he learned to walk again but he otherwise rarely to never spoke and, when he did, he had no memory of who I or anyone else was, who he was, and he had no interest in anything and spoke of nothing. At most he might ask for a cupcake if he saw one. Over 18 years I half expected him to die at anytime with several repeat hospitalizations for other ailments that would have killed lesser men. My mom looked after him at home and we tried to pay for private nursing care but she wouldn’t accept this. They had had a very loving relationship, plus my mom hated having others in her home. When my father first had his stroke, I came to hate the doctors who came and went with their false hope – this being kind of awkward as I was an MD myself in the middle of a residency. I’d also just married and my father’s stroke has been like a shadow over my adult life. For years I’ve felt anger. My Dad went to hospital 18 years ago with a heart attack, was given TPA (a clot busting drug) and the result was this massive stroke he suffered in the ER where no-one noticed the damage that had been done till too late. I hated the ICU doctors who revived him and gave back an empty shell, a primitive robot that could make a ‘thumbs up’ on command but little else. But then over years he would come along on family holidays and events, always smiling if saying nothing. I’d look after him at times to give my mom a break. He’d watch me do things, smiling like crazy at my kids though not saying a word, though a few, rare times he spoke to me and asked me if I was his brother Herb. This past year before he died was very hard with severe bladder and bowel incontinence, and my mom rarely went anywhere with him, with Covid making this all worse. He was re-hospitalized and I ‘snuck’ in to see me – I didn’t really lie, I just told the front door staff I was there to see Mr So-and-so and showed my hospital ID and said I was a doctor. But we knew then he was dying and this was no way to go about it with all these hospital restrictions on visitors, So we brought him home. Palliative care came and, aside from putting in a IV port, was completely useless. My sister and I gave morphine as needed for discomfort. He died from heart and kidney failure with us all there, my mom saying to him that he could let go – and he did. After so many years I don’t even know what to feel. With Covid we had a Zoom funeral of a sort but no real gathering. Tonight we had my mom for dinner – us all wearing masks – and she seems fine. My kids 14 and 12 never knew my Dad, and my wife only knew him for a year before we moved to Halifax and then he had his stroke. My kids and wife are nice and supportive but I feel alone with this feeling, this pang of pain that comes and goes and leaves me back to normal. But tonight I want to feel sad. I was googling related things when I found this site. For all of you in this world whose stories I’ve read with this sadness, you aren’t alone and everything will come to an end someday. Your pain can be endured – like the saying, if you feel like you are going through hell, keep going. Now I think I’ll go to bed and probably not think of my dad for awhile, though next year one his birthday I’ll probably have a drink of the rye he loved (Crown Royal) and be sad again. Signed Anonymous

    Anonymous / Reply
    • Thank-you for taking the time to write an account of everything that you have been through.
      My 85 year old Mom had a massive stroke on Sunday.
      My 88 year old Dad is being really brave. She is currently day 2 of recovery so much is unknown about what that will look like. I really appreciate your insight into what I am facing and what other information I hadn’t even thought about.

      Catherine / (in reply to Anonymous) Reply
    • My mom is in longterm care – Lewy Body dementia and Alzheimer’s. She had a bad stroke on Sunday around supper time. The doctor has not even come to see her. We want the morphine drip, no lingering, no heroics. She is totally unresponsive. Please help me folks. I have asked for a family meeting, for the visiting policies during covid (for palliative vs non), and feel like I am screaming in a bad dream. Should I escalate this NOW to CPSO? Should I track the doc down myself? Any sane advice is welcomed.

      AJ Coates / (in reply to Anonymous) Reply
    • How is your dad now? My grandfather ,87 yrs, got a major stroke which effected his left side. He is only a little responsive. Otherwise very very drowsy. How has your mother recovered?

      Priyanka Sethi / (in reply to Anonymous) Reply
    • I just wanted to say thank you for sharing your story, i lost my mum aged 76 last December 2020. I found my mum at home in March that year on her hands and knees and couldn’t talk or even recognise me, when i got her to the hospital and found she had suffered an ischemic stroke, i was shocked and scared. Unfortunately she suffered a further stroke weeks later which left her bed bound, unable to talk and she had to be peg fed as she had lost her swallow. My mum had to be moved to a care home for palliative care as i was told she wouldn’t have long. 9 months of not been able to visit due to Covid broke my heart and i had to settle for window visits, she was re-admitted to hospital following seizures and i was able to visit due to her being end of life and say my goodbyes, she pulled through and spent another 3 months at the care home until she passed away. I miss my mum terribly and the feelings of guilt i have are unbearable, if i had found her sooner, that I couldn’t visit and she suffered alone. I also know that many people will be feeling the same through this awful time and it’s not what our loved ones would of wanted for us. We cannot change what’s happened, i’m still on a journey but i’m trying my best to remember the good times i shared with my mum and i reach out to anyone going through a similar situation that time is the only healer and it’s ok to not be ok.

      Sarah / (in reply to Anonymous) Reply
  31. Reading these stories has been so helpful. My story is long. My darling sister was 64 when she had a massive stroke on 31st March this year. She was in Portugal at the time as that’s where she lived. We couldn’t get out to see her due to Covid so for 5 weeks we had a real struggle trying to communicate with various doctors and authorities. We were so desperate to be near her or see her but there was nothing we could do. Eventually my younger sister and I with the help of our partners, managed to get enough money together to pay for her to be brought back to the UK via land ambulance. This was the first time we were able to speak to the medical team who were with her and get a better understanding of her condition. She has aphasia so can’t express herself verbally. She has no movement on her right hand side. She is doubly incontinent and spends most of her days in bed. She is in constant pain. The only thing she does for herself is use her left hand to feed. Physiotherapy and speech therapy have stopped, although a request has now been put through for these to be re-introduced. She is now in a nursing home and our visits are restricted to once per week for each person but we stand outside her room and have to shout through the window which is very difficult. I am grieving for the loss of the sister I grew up with and love so much, yet she is still here, it’s such torture to see her the way she is. She was an independent woman, intelligent, extremely funny, very attractive, taking great care of herself, her home and her dog. She has two young grandchildren who she was hoping to see much more by returning to the UK and was looking forward to spending these latter years of her life closer to all her family. She has been robbed of any pleasures and I question why every moment of every day. My sister and I feel so guilty that we can’t look after her in one of our homes. We hate leaving her after each visit as we feel we should be the ones taking care of her. The impact this has had on all our lives is truly devastating. I pray for a miracle, that she will wake up one day and be able to tell us how she feels so that we can do the right things for her. I would love to know if there is anything more we can do or help she can get to make her life happier? This is the first time I have been able to put this into words knowing that you who are reading it, can truly understand much of this nightmare and it helps to know we are not alone. Bless each and every one of you ❤️

    Dawn McPhee / Reply
    • Yes a peaceful pain free death is much better for all “.Morphine drip ” No fighting to keep the person alive for what.Love and let go..

      Norma / (in reply to Dawn McPhee) Reply
    • Reading this I felt every word you said my grandmother who raised me I feel was robbed of such a good life she helped everyone loved everyone and was such a happy person …I cry just at the sight of her because she doesn’t deserve to be paralyzed in pain fighting to live because she loves her family and is so afraid of death …life will never be the same but I keep praying for a miracle atleast to get her ability to eat and talk again …god bless you you are not alone

      Brittney Dickerson / (in reply to Dawn McPhee) Reply
      • Brittney, I am in the same situation with nu grandmother. She suffered a stroke almost a month ago and she is somehow aware but cannot move and cannot speak..I pray every day for a miracle because I keep reading about improvements in the first months. I will never give up hope because she doesn’t want to die either. I feel you. God help!

    • I had a stroke 12 years ago. I was 63. I couldn’t move at all and I couldn’t talk. I left my body and was looking down at it and someone took my hand and said you have to go back, I said couldn’t move and couldn’t talk so I went back to my body. I had 3 months in hospital for rehabilitation. I had to learn to do everything again. When I got home my husband had to go to work. I could walk with a limp and my right side didn’t work. I was on speech therapy. In the last 12 years I am still improving. I can talk a little bit now. I had to learn everything again. I can bake and cook meals. Friends and family are wonderful to me. My husband died last year and I can manage living on my own. I had to work hard to spell and form sentences.

      Jan Andrews / (in reply to Dawn McPhee) Reply
  32. Thank you guys for sharing your experiences with your loved ones. I was on a video call with my grandma on the 15th March 2020..She is not a person who openly shares her feelings that moment she was telling me she loves me so much..and I bring sunshine and happiness to her when m around. 2 days later an ischemic stroke left her paralized and unconscious. How I miss u cherish that last conversation. Now she is on a feeding tube. Unable to talk..the brighter thing is..she can walk now and even use the toilet. No more diapers.the doctors had said she will be bedridden for her entire days.miracles can happen. I am hopeful for more brighter days.

    Lebo Obonetse / Reply
    • I would love to chat with you more. My Dad had a stroke a month ago and what you said about your Grandma is mirror image of what has happened to my Dad. My heart is breaking not knowing if I will ever hear his voice again. Please lend an ear.

      Sooner Schoepke / (in reply to Lebo Obonetse) Reply
      • Hi
        My mam is 81-years gone October. She suffered 3- strokes ischemic stroke then an adjacent stroke and thalmic brain stem stroke.
        Mam has not regained consciousness and only blinks her eyes to voices.
        Mam is tube fed and lost the ability to Swallow.
        Prior to the strokes mam was a very fit lady and self cared. I now worry for the future and mam not making any progress or recovery to live a meaningful life.
        I’m so afraid my mam will remain in a vegetative state. We plan to get mam home ASAP as COVID has took away all hospital visits 😢.
        It’s been a difficult year for everyone who has experienced a love one suffering a debilitating stroke.

        Anonymous / (in reply to Sooner Schoepke) Reply
    • My aunt got stroke in january, she remained bed ridden for all the time, developed aphasia, stiffness of the muscles of the lower limbs, she was also catheterised all times,but had appetite. She died today 13/10/2020. Is this the trend of stroke

      Ayiga Patrick / (in reply to Lebo Obonetse) Reply
  33. Hi All,
    I’m in tears reading all your heartbreaking stories!
    My dad had a major stroke 11th April this year, and last week was discharged from hospital for palliative care to a nursing home. He cannot eat and is struggling to get fluids in…
    My sister and I are basically going to have to watch him as he starves to death and my heart is breaking so much….there must be an easier way than this!!
    He is not in pain, which is great, but he is kind of with it mentally (not fully) so not sure if he knows the severity of the situation.
    I feel so much for you all and know what you are going through…….love to you all, Jx

    Jill / Reply
    • I feel for you,I’m going thru the same with my Dad and its painful and heart breaking not having anyone to talk to that understands what I’m going thru.

      Sooner Schoepke / (in reply to Jill) Reply
  34. Hi,

    I found my mother on the bathroom floor at 6 a.m in the morning struggling to breathe. She did not respond to me speaking to her and her eyes did not react to my hand waving over her.

    The doctors told me she had had a massive hemorrhagic stroke and because of her age ( 90 ) she would not recover. My gut feeling was that they didn’t wish to waste any resources and energy on operating on her. My mum was a very strong willed and robust for her age.

    Basically, she was put straight into palliative care with no feeding tubes, no water and left to die. She held on for a week. Life is very cruel sometimes. We visited her every day, holding her hand, talking to her and she would respond by squeezing our hands tightly and pulling my head close to her.

    Her “ treatment” at hospital reminded me of what the ancient Romans used to do to the sick, the old and babies born with defects.
    Just left them on a cliff’s edge to die.

    Alex Huber / Reply
    • So sorry to hear about your mother Alex…and sorry for your loss….
      I agree, the treatment does seem cruel and I can’t help but think, there must be a better more dignified way than this……

      Jill / (in reply to Alex Huber) Reply
      • I’m going through this with my momma ! We need to change the law in this country! Let people have a quick comfortable, pain free ending ! We don’t allow animals to suffer ……disgusting letting humans starve and dehydrate! If my mom comes home I will be making sure I give her what she asks for! At this present time, I’ll serve time in prison if I have too! To watch the suffering is so traumatic

        Jo / (in reply to Jill) Reply
        • Hi Jo, I’m so sorry for what you’re going through. My mother was independent and joyful and dancing the day before she fell and broke her hip. Then while finally getting up to walk and take some steps in preparation for rehab she suffered a stroke on May 20 impacting her left side, ability to swallow well, speak well… her mind intact which I’m both grateful for and tortured by because she is fully aware of what’s happening and what it means in terms of the life she once knew. It’s excruciating not being able to be with her because of Covid restrictions still in place here in Toronto. She’s always been very clear she would never want to live this way… I feel so helpless. I would take her pain in a heartbeat… I feel for everyone who has shared in this space. I am working very hard to make sure I don’t go down the rabbit hole of wishing it to be different than it is, or creating worst-case scenarios in my head about how she is being cared for when I can’t be there with her. With my father I was able to be with him every day, holding his hand and making sure he was as comfortable as possible and that his needs were being met. I’m working on managing the guilt of not being you to be with my mom… There is an equation that has been helping me of late: pain X resistance = suffering. The pain in this case is my own excruciating pain of knowing my mother is going through this and going through it without the love and care for family. The resistance is wanting it to be different than it is while it just can’t be… The suffering comes from spending time imagining this hadn’t happened, that I could be there with her every day (or at all), that something different could’ve happened to change this outcome… That’s the suffering. As they say, pain is inevitable, suffering is optional. In working on that… While doing the best that I can to be there for my mom over the phone and the iPad that they bring into her and talk to her doctors and nurses and ask questions and advocate as best I can. And finally, I do this by reminding myself I have to focus on taking care of myself. I need to be well and strong to be able to advocate for my mom in the best way possible. Self-care isn’t selfish it’s self-preservation as Audrey Lord once wrote. My thoughts are with all of you and your loved ones.

          Shelley / (in reply to Jo) Reply
    • My mom suffered a massive stroke in May of this year that left her with left side paralysis and aphasia. She is now bedridden and it is very heart-breaking to watch her daily struggle. The hardest part is when she asks for water to drink and I have to explain to her that she can no longer swallow. Mom has always been active and lively. Just a year ago she was driving herself and living her best life. I am so so sad. For the most part in her mind she is still fine and active and does not realize her situation and I guess that in itself is a blessing. She is still her old self, talkative and lively. Rambles on all day, in an altered state of reality. It’s almost like her brain is protecting her of from knowledge that would make her sad. Anyone else have a similar experience?

      Khadija / (in reply to Alex Huber) Reply
    • So sorry to hear this Alex. We are in similar situation in that last several days with my mother having a major stroke. She is 79 but has had her share of health issues the past several years. Doctors said the scan showed significant damage to right side of her brain and due to her age and blood thinners they could not do anything for her. So she was pulled from the ventilator and moved to palliative care, with meds to manage her secretions and pain. She is a fighter and hanging on almost 48 hours later but i just can’t help think there has to be a better way. She is dehydrating and soon her blood thinners will expire. We unrealistically are hoping for a miracle as we fail to prevent her from dying from other causes. Many of the nurses have been wonderful but ican’t help thinking there’s a better way. Our heart and prayers are with all of the people and stories here and everywhere. My mom has done everything for me and her boys. So hard not to be able to do more for her.

      Cb swan / (in reply to Alex Huber) Reply
      • Hi am.also going through this with my partner hes had strokes and is now bedridden for like 19 months now can walk can talk a little not much very hard to understand his mental health is suffering it’s so hard to watch someone that cant do anything for themselves any more he gets cares 4 times a day

        Dawn Murphy / (in reply to Cb swan) Reply
    • Oh my God I’m so sorry they didn’t give your mother more treatment just because of her age! That’s not fair! Some ppl live to 110 now a days w very swift active lucid coherent minds and still fairly physical too! I’m so sorry, I will keep ur family in my thoughts and prayers as you try to deal with your grief. And there is no right or wrong way to grieve, anything you do and feel is ok.
      My heart hurts for all of the accounts above. My mother in law had a stroke in the ICU about a week after having bad heart attack but she had begun on the road of recovery when she had stroke a day ago. I’m calling DRs tomorrow to get answers & ask the right questions (my sister in law doesn’t ask, bless her) so I was searching online what are the right questions to ask when I came across this article & all the replies & Anonymous above w his father from 18 yrs ago sounds similar to my mother in law. I don’t even know what meds they had her on, what type stroke ,nothing yet!! Ugh
      God ,she has to recover & fully!!!! (My grandma recovered wonderfully w no lingering effects & lived another 20yrs! But my other gma died from having 2 Grand Mal seizures & strokes )
      U are all in my thoughts, Blessings

      Lynne K. Lynch / (in reply to Alex Huber) Reply
    • Hi Alex,

      So sorry for your loss, last week my grandma was rushed into hospital with a haemorrhagic stroke, she was unresponsive but able to breathe independently. The CT showed a lot of blood and the hospital refused treatment. The days after we’re incredibly difficult for my family to understand. They removed all liquids and she passed away a couple of days after. I’m still in denial that this has all happened and demanding more answers. She was responding to us with mouth ‘hiccup’ type responses to certain topics and questions we were asking her and she would move her feet when touched, also would move her mouth etc. when applying some wet cloth to moisten. I’m still traumatised from the whole thing. How and why they would leave her to die and basically dehydrate to death. I’m so destroyed seeing her in such a state, why they withdrew everything and wouldn’t give her a chance or even a more indicative MRI, might I add she was 85 but so so fit and heathy. I just cannot comprehend how cruel the NHS system is. They couldn’t even find her a bed on a proper ward and she passed away on an investigation unit. So so so awful.

      Becky / (in reply to Alex Huber) Reply
  35. My mother had a massive stroke may 10 she is in icu for 4 days
    angiogram only done for her but in brain there is a swelling
    Doctor said that operation needed after 48 observation
    After use of medicine swelling become less so doc said now no need of operation
    After 1 week she can little walk she can sit she can say only one word
    But iam very afraid of my mother health is she will be ok in future?
    Pls replay me

    Aliaabir / Reply
  36. My father had a massive right hempishere IS on May 13th 2020 age 64. He spent 2.5 weeks in ICU where I only saw him via video call due to covid19 restrictions. They removed the ventilator after 2.5 weeks and he deteriorated. He expressed a strong wish not to be reintubated. They wanted to do a trache but he refused one. I was allowed in to ICU to confirm his wishes. His speech was bad but he clearly stated ‘absolutely no way’ a few times. They documented his wishes. I felt this was goodbye so I left the hospital distraught. The next day he was sitting up and on room air. They moved him to the ward that evening. This week has been a rollercoaster. I have had three calls to come in, dropping everything to be by his side. Having to leave again to feed my baby who is breastfeeding and is not allowed in hospital. They made a decision to stop active management today because his heart is under too much strain. They can’t be certain but it looks like he is now near the end. I want to sit with him 24/7 but I can’t because I can’t bring my baby in to the ward. My heart is totally breaking. He is having semi-lucid visions. Talking about the past. He knew his sister, he knows me. So he is there, but also somewhere else. He was trying to say things to me and I couldn’t make out the words. This has been the most difficult thing – not being able to hear what he is trying to say. I don’t know whether to tell him he has been moved to palliative approach or not. I don’t know whether to go into detailed apologies for things I regret. I feel this time is about him and not about me, and all I need to do is sit quietly and hold his hand. He seems to be holding on. I don’t know what for – I want to give him permission to go without telling him to go. I’d love it if he made a recovery but i know he would hate to be stuck in a wheelchair and in a nursing home. Which might be the best he could hope for, even though it looks like his body can’t even get him there. I wish I knew what was going to happen, the up and down has been incredibly hard. I’ve said goodbye three different times now. Am I grieving or not? I want him back. I don’t feel ready.

    Niamh / Reply
    • Dear Niamh,
      What a difficult position to find yourself in!. Your dad has clearly decided he did not want a tube, and it’s obviously good that everyone is respecting that.
      I think you are doing all you can…being there by his side as much as you can….. while being a breast-feeding mum and caring for your little one during this pandemic. It is difficult …..but sitting there as a daughter at his side must be so supportive for him and give him real joy amidst the suffering. It is a roller coaster emotionally, but you must just hang in there.
      Be assured you are really doing the right thing loving your dad in this way. Wishing you peace in all the ups and downs.

    • I’m so sorry Hun I know exactly what you are going through cause my Dad had a massive stroke on August 15th and can’t swallow or talk and is fed through a peg in his stomach. He was put into a nursing home for rehabilitation but was rushed back to the hospital after a week with pneumonia cause of him asperating. I am so scared that he will die and I’m not ready to lose my Dad yet,does that make me selfish?

      Sooner Schoepke / (in reply to Niamh) Reply
    • Sorry to hear that just know you are not alone I’m going through exactly the same thing with my Granny💔

      Tuni / (in reply to Niamh) Reply
  37. My son was diagnosed with a Grade 5 AVM when he was 21. It was on his cerebellum, it was explained to us that direct operation was not recommended because the results would very likely be death or huge disability. Embolization and Gamma Ray treatment ensued over a period of 5 years, my son was externally completely well, underwent studies every year and had 6 interventions. He never lost a single capacity, traveled extensively, studied abroad and it seemed that he had overcome danger. 12 years later (two years ago) he had a massive stroke which resulted in brain death almost instantly. He had no outward symptoms of what was to happen except – now that I recollect – a certain back pain which we all associated with the time he spent on his computer or working on his art. What I did notice was that there was a form of depression that set in when he was diagnosed. Whether that was because he knew that the risk was very high, that a chemical unbalance ensued or whether just knowing that he had that in his head made him uneasy. After his stroke he spent two days at the hospital, he never woke up again or had a single reaction. He was being kept alive but according to the doctors who performed all kinds of tests on him, he was gone. After those two days we were told that there was no possible reaction and that it was best to disconnect him, there would be no emerging from that state. In reading all that I have seen above, I now see that perhaps it was the best. He had lived a full life without a single debilitating sign – 33 years. It is the most terrible thing in the world to have to accept his passing, and I just wonder if he knew what was going on when it happened, just how conscious he was about what was to come. I shudder to think what it would have been like if he had regained some form of consciousness and was completely disabled, with time ahead of him that would have paralized all his hopes and dreams, that would have made him thoroughly dependent. As I write this I think that a mother always thinks that her child’s life comes before everything else, but that there are situations which indicate that life which is only staying alive technically may not be a life at all – just suffering and the greatest possible frustration.

    beatriz / Reply
  38. My 93 yr old father had no quality of life. Blind, deaf, some dementia and very poor mobility needing help to walk very slowly. He’d gone off food and was feeling very sorry for himself for two weeks before having a big stroke and heart attack. He was left with weak left side and face droop, no speech and very poor swallow. We were asked to chose between feed tube for feed and meds or no tube and keep him comfortable on end of life. Knowing he hated the poor quality of life he had the decision was easy. No tube. We were told he had weeks rather than months and they would keep him comfortable. Five days later the chaplain phoned and said dad was sitting up and enjoying ice cream and trifle for lunch. I thought she had the wrong person so ignored her. But I worried, so at five pm I phoned the ward. I was told that at 3.30pm Drs had heard of dads improvement and had restarted normal life. Normal life! He had poor quality before, what would normal be after? I was asked if I would agree to feeding and meds agin. They said after 5 days he had shown no deterioration so was strong so they couldn’t continue end of life. I was annoyed that I found out via the chaplain and that I had to phone 5 hours later to get the information. My mum had such a bad choice to make, but had come to terms with dads end of life care that she had mentally said goodbye to him and had regained some light in her eyes. She’s had no life attending to him because he couldn’t and wouldn’t go out for a few years. I haven’t told her yet he’s restarting ‘normal’ life. If his disability is worse he won’t be able to come back here. We couldn’t cope and our house isn’t suitable for wheelchair movement etc, plus my husband pointed out that we would have no life either because we’d never be able to leave her on her own with him. No one has said yet the prognosis of recovery or chances of more strokes . They just said they’re taking it day by day. It’s a nightmare. If he’s more disabled he’ll be so miserable. No visiting due to covid -19 of course, so all discussion is done by phone. And all this “he only has weeks” left then saying “he’s strong” and we won’t feed him then they do and each time I’ve had to phone to ask what is happening. It’s distressing and just a nightmare. I don’t want him to go through more suffering, but then I don’t want to look as though I’m wishing death on him. I just want what is right for him. He never wanted to be in a nursing home which is why they came to us when he couldn’t manage stairs.

    Maggie / Reply
  39. Hiya. Thank you so much for this post. I am glad i am not the only one left with questions. My mother had an intensive stroke in September 2019 and she passed on thr 11th of April 2020. She spent weeks in ICU and had a tracheostomy procedure. This helped wean her off the ventilation. She was left with a left side paralysis and no sensation. She spent 5 months in hopstal, while at ward she learnt to swallow again and she was eating and talking. They discharged her home on the 28th of February. She was very hopeful about her condition while in the hospital rehabilitation. The hospital wanted to move her to a nursing home following discharge but they later changed their mind due her improvement. In addition to the stroke weakness,.she also had asthma, hypertension, atrial fibrillation and obesity. From March the pain in her left side was unbearable and she asked if I could take my little brother under my care. The week before she passed she was hardly eating or drinking she just wanted to sleep she was also alot more breathless at times especially when talking. The morning she passed she was with her carers for her morning routine. She called out for my dad and asked if he could put her back to bed as she had hanged her mind about having a shower. The moment my dad put her to bed she straighten her self and got breathless and became unresponsive. My dad video called me at this moment and i watched the paramedics do their best for almost 2 hours before saying it was in her best interest if we let her go. I was left with so many questions so I called my mother’s GP 2 weeks ago. He said due to the massive stroke she had and left paralysis she wouldn’t have made it pass 2 years. It was likely the fluids were on her left side of the body due to lack of movement which is why she was in pain and left her arm and leg swollen at times. Her left lung might also have had fluids which could have lead to breathless. I just wish they told us if she wasn’t going to live long. I mean after all she went through, death was the last thing in our minds. We expected it when she was in ICU but not then. I am just so glad i went over for mother’s day weekend regardless to current restrictions. As i genuinely got to say bye.

    Liyah / Reply
  40. Hi, I’m sorry that the stroke effected there love ones life. My mom had two massive strokes. One in October 2019 and another Nov 2019. My mom was a very independent 81 year old woman. Now she’s 24/7 care. Working in health care I know it’s hard on her and us. We make sure she enjoy everyday. We don’t want to take care of her like it’s her last day; we enjoy our time with her however long that might be. She have ups and downs, good and bad days. We just pray and ask God to help us to help her the best we know how. We’re sad sometimes, it’s normal and expected. Overall we’re more grateful for the time God has given us with her. She’s still here by the grace of God and we’re thankful. The best thing we did was take her home when the doctors recommended hospice. She was very excited and came alive the moment she arrived at her apartment. Last month she started having spasms and more pain but she’s strong. She refuse her pain medication most of the time. I wanted to share my story because it’s how we look at things. To me it’s a blessing she’s still here. The stroke was on her left side. Therefore, she lost movement on her right side. Left side is strong like her. Maybe I look at things differently or even make it easier because I already take care of people like my mom. To me it’s not about what she’s able to do or not. It’s what you’re able to do while they’re still here. Maybe just hold there hand and talk with them, read a book or even play music. Live life with them until there’s no more life for them go live. I’ll pray you all are able to get through this difficult time. Thanks for allowing me to share my story.

    Jean Thiam / Reply
    • My mom was very independent until the stroke. I chose to move into her house and bring her home where she wants to be. My goal is to make her laugh as much as possible, to keep her clean and to let her know I love her and won’t leave her I promised her I wouldn’t call 911 again. This is the only promise I am scared about keeping. I refuse to watch her die thru a window. I have no regrets or hope of recovery, just the time I have to spend with her before her journey ends. Thank you for your story.

      Judy / (in reply to Jean Thiam) Reply
  41. My 82 year old mum suffered a ruptured aneurysm on Saturday night and has been in a coma ever since. The hospital have said they are just giving palliative care and mum has no drip or treatment at all, although they are giving her morphine if they think she is distressed though. I have been allowed to see her each day for half an hour (wearing ppe) and have played music and chatted to her, I even thought she squeezed my hand and reacted when I talked about memories of our recent holiday together. The consultant has said that the bleed was so massive and she will definitely die, what I can’t understand is how she is still breathing and hasn’t passed. I feel very sad and kind of cruel that she is going through this and would like some advice if anyone else has been through a similar situation, thank you x

    Wendy / Reply
    • Dear Wendy,
      So sorry to learn of your tragic experience with you mum getting a ruptured aneurysm. You are doing the very best thing, and in my experience it is amazing how people can still realise and appreciate their loved ones being there even though seemingly unconscious.
      I do wish you strength as the days go on remembering all those good times and holidays. and knowing you were there with your mum in hospital even with the ppe.

      • Thank you Scott, it’s so lovely that you read my plea and took the time to reply.
        I’ve been going in every day just chatting and playing music to mum and praying with her, I did feel yesterday that things were different though and maybe that ‘mum’ had passed to somewhere nice and it was just her body laying there. She truly believed in having a sixth sense and early yesterday morning my daughter and I were woken at the same time (we live I different houses) and my son had a very vivid dream where mum was with him, I like to think that she was letting us know she’s found her place in heaven.
        Wishing you well throughout this pandemic, stay safe x

        Wendy / (in reply to scott Murray) Reply
  42. I just wish that people who have such massive strokes the medical system would let them pass, stroke is the most disabling thing that can ever happen to a person, I watched my sister for 14 months battle with it, until finally, it ended, she passed early March 2020, she had the most terrible time of it, she was lucky to be able to eat and talk, but not much else. I don’t understand the logic of it, in the ICU, the guy said we have to keep them alive that is the law but to leave people so disabled because of the severity of the stroke it is not right. Some people only have a small stroke they can recover well and get on with life, but others that have a major stroke are not so lucky, the doctors told me that 1/3 of all stroke patients go home in a wheelchair, it’s very very sad and not right, just let them pass, then there is no suffering.

    Kaz / Reply
    • October 2017 my husband aged 58 survived a massive stroke TACS so I fully understand how you feel. He can talk and eat but other than that is totally dependent on 24 hour care. He is in constant pain, on medication that causes significant side effects and spends most of his time in bed. It is heartbreaking for me and our children to watch this. No matter how much I , doctors, consultants tell him he has reached his full recovery potential ( He can with supervision transfer from bed to wheelchair which then leaves him exhausted) still thinks he is going to fully recover and return to work. He has no concept of time and wakes up everyday and pushes himself to go to physiotherapy in the hope that this will make him better. The information, support, help etc. Provided by multi disciplinary team, social worker etc. was poor to say the least. After 6 months in hospital he was sent home full of false promises that we would get all the help required to meet his care needs. Unfortunately after a year at home with minimal unreliable care package I couldn’t cope with working full time and caring for my husband. He is now in a care home and has no quality of life whatsoever.

      Marie Thomson / (in reply to Kaz) Reply
      • Dear Marie my heart breaks reading is my life too. Husband had massive brainstem stroke- undiagnosed too late to treat. He was locked in his body with only eyelids moving. He was asked if he wanted to be fed (by tube) and he blinked yes. He survived to pneumonia.s. He was moved to a brain injury centre for 9 months but remained unable to speak, use all but part of one arm and 3 fingers. 9 years later he lives in a care community which he despises but due to his mood swings, anger and other behaviour issues, as well as being fully dependent i can’t cope with living with him. every day is a struggle for him and hell and guilt for me. He has turned his family away and there is now only me. I visit and spend from lunch to bedtime with him. This is no life.

        mary / (in reply to Marie Thomson) Reply
      • i forgot to add Marie- he was 48 when the stroke happened.

        mary / (in reply to Marie Thomson) Reply
      • Marie. I too have similar circumstances. My wife of 50 years had a severe stroke in January and I approved a gastric tube to help with what i hoped would be a good recovery. She had a first stroke in 1998 and recovered 90% from it so i was optimistic the same would occur this time. Now six months later she takes all nutrition, fluids and medications through the gastric tube that now looks permanent because of a couple failed swallow studies. She is totally dependent for all her needs also can’t talk or walk and is very weak. She doesn’t have the strength to press the buttons on the TV remote or the cognitive ability to understand how to use it. I’ll care for her as long as possible because i want her to know i love her and want to make sure she gets proper care. I don’t believe she will get proper care in a nursing facility because of all her needs. Although it is overwhelming at times its very rewarding caring for her especially when she smiles.

        Robert / (in reply to Marie Thomson) Reply
  43. So reading everyone suffering I lost my father on 18 December , 2019. He had Ischemic stroke on 20 November present with slurred speech , loss of consciousness and his left side is effected (loss of function ) no sensation at all .. I were in Wuhan , China pursuing my Medical degree while my family told me that he’s fine! While I saw his reports he had MCA infarction with 30% of carotid Stenio’s that’s consider as critical while as by guidelines above 60-70 is considered as surgical ( result with permanent loss of function ) so he were in ICY for 3 days condition getting better while his 72 h were critical even doctors asked us that may be he will have hemorrhage cox of his loss of consciousness in ICU I call to doctor and discuss my father medical condition he said he’s in critical condition and because of his unconsciousness we will hydrated him in 24h and reduce his medicine may be that’s sedative effect of medicine but after 24 h with that protocol my father is conscious able to talk able to eat less damage to cranial nerves ! Doctors shifted him from ICU to HDU things getting better I got relieved but he’s still in urinary catheter and my father hate it but with the passage of time he moved to ward spending 10 days altogether in hospital one day doctors discharge him and asked us to hire physiotherapist at your home with medical attendants while we do our best to hire physiotherapist and medical attendant even I had video calls with my Dad he was all fine and conscious but with the passage of time he give up cox he lost bowl sensation as well as urination reflex so we ended up with diapers .. things went pretty good his left hand and arms were paralyzed bds with the passage of time he move his leg and 3 days before death he able to move his left hand ( that was completely paralyzed with no sensation. At the first day of stroke .. 3 days before his death my mother call e and explained that today my father had some breathing difficulty ( Dsypnea) I asked to visit doctors she did and on Wednesday 6:30 my father feel sudden cold then immediately sweat popped out of his whole body ,he feel extensive head pain with SOB (shortness of breath ) on the same day just 1-2 h before death he asked my sister to straightened his leg my sister did it but he didn’t feel ! And within 20 min my father got unconscious my family immediately without waiting any ambulance shifted him to hospital but the saddest word from doctors my family ever heard in their whole life is “ his ECG is straight “ , “No pulse” “died almost 20 minutes ago”! That’s life the saddest day in my life ever I feel helpless that time but can’t do anything 😞😭😭

    Waqasbhatti / Reply
    • My Condolences and prayers go out to you and your family. I just lost my dad from severe stroke he had 3 years ago, and the symptoms your dad had just before he passed, my dad also did, very, very sad for our family as well. He passed away April 4, 2020. Saturday at around 3:30 am. And I couldn’t see him in person because it happen in Calgary, Alberta, and I live in Australia. And because of Covid-19 I can’t travel.
      We still don’t know what happen to him, the death of his cause, he vomit in the morning, and then had fever, his blood pressure got high, and he went unresponsive, I felt helpless and scared and unfortunately they don’t have iv machines which I think age care homes should have, and that was late Friday afternoon, and by Saturday morning he passed away, I am still puzzled. What helps me through this mourning, is people’s prayers to give me peace, and I have been sensing peace, and also I think of his situation he wasn’t living a quality of life and just gave up. I will miss him very much, knowing that I can’t spend time with him, give him a hug. It crushes my spirits, but I must think of what he was going thru.
      I hope this can reach out to someone who is hurting, and knowing don’t suppress your pain go through it. Going through pain helps you heal. May my dad Rest In Peace.

      Shelley / (in reply to Waqasbhatti) Reply
  44. My sister was 32 when she had a stroke. She then had a second stroke this time affecting her cerebellum. She cannot swallow on her own, eat, communicate, or move her entire right side. She’s currently in the ICU. My family and I are having an extremely difficult time. I myself have broken down multiple times, yet I’m usually not very emotional. I’m struggling with the fact that she may not recover and I cannot fathom seeing her live like this for the foreseeable future. I am experiencing depression and anxiety. I cannot sleep and do not have an appetite and I am a young healthy male whom works out frequently, but cannot being myself to eat. All I ever think about is my older sister. I feel so bad for her that it absolutely tears me apart.

    Zach / Reply
    • I’m sorry Zach, with your sisters condition, it’s very hard to watch our family members loose their quality of life. My dad had a severe stroke on his cerebellum, and had very similar symptoms. When he had it 3 years ago, I was devastated, I thought I was going to loose him, but after 3 months he improved, started to talk not like before, and smile, and eat. What didn’t go back to his quality of life, was he he couldn’t swallow liquids he had to have everything thicken, and he ended up in a wheel chair, however this age care really took good care of him he was determine to walk, now I was very disgusted with the rehab people who did exercise with him, they didn’t push him enough, and he needed that. So he never walked again.
      Miracles can happen, the mind is powerful, and can help with healing if she is determined. She can walk again, but it’s up to her. Hold onto hope, however just know she might not go back to her quality of life, but she can live a life.
      However my dad passed away April 4, 2020. And it’s been very hard week, however I’m thinking what kind of quality of life did he have, and in the beginning he did well, but last year he went from a Down turn.
      Be there for her, and encourage her, we all here can relate to one another, and sympathize thru the pain together.
      I don’t know if your believer, but it comforts me to know this is not the last time we will see our loved ones.
      I pray for healing for her and you.

      Shelley / (in reply to Zach) Reply
    • My brother had his stroke March 10, 2020, just when virus lockdowns were starting. He can’t eat or talk or really move much. I can’t even visit with my brother to comfort him. I’m so heartbroken.

      Lorraine / (in reply to Zach) Reply
    • Zach, I totally understand how you feel. My sister is 65 and had a stroke on 31st March. Your sister sounds very much like mine. We too are devastated by what has happened and can’t bear what the future might hold for her. She is in a nursing home now and needs 24 hour care. I hope your sister recovers enough to be able to have a decent life. My heart goes out to you and I hope your sister improves daily. Dawn

      Dawn / (in reply to Zach) Reply
  45. Thanks for this article.
    But after reading this article….I have given up all hope with my mother….
    My mother had massive ischemic stroke on 29th January,2020…And she was admitted hospital 2nd February,2020….. For late treatement her left brain totally damaged…
    For this reason she couldn’t sallowed…. speaking and memory loss.. recognize problem…. Right side totally paralyzed…Even her behavior like baby…The neurologist could not give me any hope for her well-being..
    I lost my father 3 years ago and without mom I’m alone this cruel world…
    I just want my mom alive with me…But it is written here that they do not survive less then six months…Is there no chance to recover my mom ????

    Tamanna / Reply
    • That’s not true because my dad had severe stroke at 70, at the cerebellum, and he couldn’t eat for 3 months they had to feed tube him, he couldn’t speak very well slurring his words, also couldn’t swallow no balanced, and was paralyzed on his left side and ended up in a wheel chair unfortunately, however he did last for a little over 3 years, if they are determine they can live longer unfortunately he passed away April 4, 2020. Don’t give up, it’s up to your mom. I also have a client who had a massive stroke, it’s a miracle, she was in a wheel chair for 3 months, and walking now of course she might not walk like she did before, but she has hope and has a great attitude. So just know this miracles do happen.
      I hope and pray healing for your mom.

      Shelley / (in reply to Tamanna) Reply
    • So sorry to hear about your mum, in a way it might be better if she goes, I saw my older sister survive a massive stroke, heart attack and many other complications, she never got back to walking or moving her left arm, she was very disabled in a wheelchair, lucky to be eating and talking, heavily reliant on care 24/7, but she passed away on the 6th March 2020, about 14 months after the massive stroke. Be strong, call upon other family and friends if you can, love to you darling xoxox

      Kaz / (in reply to Tamanna) Reply
  46. Oh, where do I begin? My mother suffered an M1 stroke (left side of brain) three weeks ago at age 76. The neurosurgeon told us that she would never be able to recover from what the stroke did to her body without having to remove half of her brain when the swelling began. He talked about nursing homes, feeding tubes, etc. When you are in this state of shock/anguish, you are listening to the professionals. I asked and could see the damage done to her brain from the CT & MRI scans, but to make a decision of what to do is heartbreaking. My family and I decided to let her go peacefully through hospice and comfort care. However, I am now playing the what if game with myself. She did open up her eyes when we called her name when she was in ICU. Although, I don’t know if she was really seeing me, did I make the right decision, miracles do happen, etc. I am really struggling, not knowing. This is the reason I came across this article searching the internet to see if someone could help me understand if I did the right thing. I know my mom would not have wanted to suffer and live in a different state of being, as she was very active, but the anguish I am feeling is overwhelming. I hope no one ever has to live with the what ifs. I will be seeking grief counseling shortly.
    March 2020

    Donna / Reply
    • Dear Donna,
      I do feel for you going through that most difficult experience, knowing the outlook was not good. I really do feel you did the correct thing. As you know we have interviewed many patients and carers with massive strokes, and I have worked in general practice and palliative care for 30 years. I am sure the doctors and nurses involved were guiding you in that direction, and letting you be involved in the decision, but it is one that is done together with a joint responsibility. Doctors have a duty to tell you clearly if they think you are suggesting something wrong, so I would not blame yourself in any way.
      It is of course natural to blame yourself…I suppose it is part of grieving. But I am pleased to read that palliative care was involved, as sometimes that does not happen, and the person can suffer by not getting some aspects of care.
      So I would linger on happy memories, and be thankful for them and your mother, and be a t peace with yourself as you really cared for her as much as you could, and done that thoughtfully and well

      Scott Murray / (in reply to Donna) Reply
    • Dear Donna,
      you did the best thing. End of story. No what ifs- it’s all speculation. Your mind is ruminating on fictive “what if” scenarios, that if you were a 3rd party observer viewing your life as played out by another, you would suggest the “what if reruns” were artifacts of grief and depression for their loss. Your mother pre-stroke was a completely different case study post-stroke. If the specialists are suggesting palliative care and quality end-of-life treatments it is definite your mother’s case was extremely severe and likely to have MINIMALA chance of recovery. I know this because I am undergoing the same situation- this is their 2nd stroke and the palliative/ sunset type case was never discussed first time around- it was all positive news and upbeat, although I felt strongly, internally, that it was the beginning of the end. Now there is a lot less upbeat talk and platitudes of recovery, therpay, rehab etc. I am a little annoyed, but I understand where they were coming from, that the non-recovery scenario of stroke treatment was not even hinted upon, although as I had said I was preparing for the worst.

      Johnson / (in reply to Donna) Reply
      • Hello I’m trying to kind of get answers or just have so many questions. My mom and I are taking care of my 84yr old grandma who has had a sever stroke who has left her in critical condition. She is not paralyzed on right side of body, she is unable to speak eat: dr”s told my mom it was time to call in hospice and that they expected her to go into a coma. She seems like she has actually gotten better she is now trying to swallow and she tries to pick herself up and move her legs off the bed. My mom and sister are just convinced she’s recovering but I’m still skeptical as idk if it’s all the medication she’s in for the pain management or if she’s really doing better and trying to make a recovery. She’s had so many health issues and heart problems now multiple stokes within days. Idk what I’m searching for I just don’t want to jump on the bandwagon I’m being not negative but not a 100% positive either. Im just wondering can people with severe brain bleeds that get sent home on hospice at her age recover and within days of the stroke. It’s just appears that she’s doing soooo much better

        Whit / (in reply to Johnson) Reply
    • Hello Donna…
      I’m from Bangladesh…
      My mother had a Massive stroke of the brain…
      The incident took place on January 29th,2020.
      But we admitted her 2nd February,2020… Because I couldn’t understand her stroke symptoms…
      For this reason her condition was very critical and her left Brain totally damaged… Her right side totally disable now and with speaking problem…she is on feeding tube…. Even she don’t recognize me…She may be survive less then 6 month or may be some miracle will happen.
      I lost my father 3 year ago…I’ve not any sibling…It’s very difficult for me to handle this situation…But I’m struggling alone with this situation….At least you have a family.

      Tamanna / (in reply to Donna) Reply
    • Sorry for your loss Donna, you did the right thing, she is at peace now, my older sister lived with the disability for 14 months after the massive stroke, she was very disabled and went from being a perfectly normal person to someone that needed 24/7 care, it was very very sad for her. It is very sad for you and your family but know that your mum is not suffering now. xoxo

      Kaz / (in reply to Donna) Reply
    • My Mom just had a massive stroke on Tuesday. She was left with right sided weakness and not able to speak or swallow. Knowing her wishes of not having artificial nutrition and hydration and never wanting to be in a nursing home, we have brought her home on hospice
      Every moment we are questioning our decision. We know her wishes but feel maybe we didn’t give her enough time. Stroke was one of her biggest fears and she would never want to be in a nursing home. With covid going on we wouldn’t even be able to see her possibly for months. There is concrete answers to this situation.

      Julie kehr / (in reply to Donna) Reply
      • This article must be for elderly because I am 39…had hemorrhagic stroke on March1, 2020..had a craniotomy to remove a huge clot from my brain. I am now paralyzed on my left side, at first my vision was blurred and speech was slurred and I could barely move…had to be hoyer lifted, couldn’t even sit up or eat on my own….After 3 months of intense PT and OT, I can now walk with a cane. I can do most things like before. Although I am not fully functional yet, I will get there because I work hard and I’ve had the best team of doctors and not one of them told me to prepare for death……as long as I stay on track and stick to my diet, I will live a long life.

        Rebecca / (in reply to Julie kehr) Reply
        • My brother in law had massive ICH in thalamus. He is still sedated on vent and not responding to painful stimuli on right side. He is 38 years old. Because of COVID we cannot be with him and have gotten very little information from medical staff. I’m curious to know how long you were sedated after your incident.

          Holly / (in reply to Rebecca) Reply
        • Hello Rebecca. I can understand your plight. But do not give up and you shall be living a normal life soon. I’ve had a stroke almost 4 years ago at 37. It was a TIA. I had to re-learn how to walk and do lot of physio therapy sessions and exercises. In few months I was back to normal.. and certain issues take longer to recover. So do not stress. It took me a couple of years to feel completely normal but it gets better as days passes. Eat healthy, eat ur medicines on time, and do your exercises what your doctor suggested. And you should be good to go soon. Some issues stay longer.. like my left side feels little numb still but can walk, run and have normal strength in hand and limb. Just don’t feel too hot or cold the same way when I hold a tea cup or cold glass etc. so take care and it will be all fine. Goodluck :)

          Parry / (in reply to Rebecca) Reply
    • Hi Donna, first I am so sorry for your loss. My mom, age 80 had a heart attack on Sunday, 6/8/20. She had a heart cath on 6/9 suffered a massive stroke right after the procedure. They gave her clot busting medication which then caused a brain bleed. She had global aphasia and had right sided paralysis. My Mom’s biggest fears were having a stroke and being in a nursing home. She had in her living will she did not want a feeding tube or artificial hydration if she became terminal. My sister and I had to make the toughest decision of our lives. I am a nurse so we brought her home on hospice on Friday of that week and she passed on Monday 6/15. I was with her 24/7 and made sure she was comfortable and medicated around the clock. I am still questioning myself every day with all the what ifs. I know in my heart that my Mom would not have done well in a nursing home. I work in long term care and could not stand the thought of aids being rough with her and letting her sit in a dirty brief. My Mom was depressed before the stroke and if she ever was able to realize what had happened to her, she would have died mentally. Like you said, no one should have to live with or make these kinds of decisions. There really wasn’t any good decision at all. I still shudder to think about my Mom being alone in a NH with no family being able to visit, but at the same time my mind is screaming that I let my Mother die. I feel I may question my decision for the rest of my life.

      Julie / (in reply to Donna) Reply
      • I know this has been a long time since you posted this but I wanted to remind you that you did the right thing. I am healthy at the moment at 77 years old BUT should I have a stoke or some other debilitating incident I pray my children would be wise enough to do what you did for your mother. You know what she feared and you made sure she did not have to experience it. I feel the same and would rather destroy my own self than live in a nursing home with no ability to care for myself. Rest easy – if your mother could thank you she would.

        EUGENIA DAVIS / (in reply to Julie) Reply
  47. my mom had a stroke on 21 aug, 2018. this led to a partial loss of speech, memory and brain and body functions. then, on 22 jan 2019, she had another stroke. she almost stopped talking, could not swallow and had to be fed via a Ryle’s tube. over the next few months, she became completely paralysed and totally lost her ability to react or to understand. even if i shout close to her face or ears, it does not lead to any reaction. the only thing that seems to interest her strangely is – if i play a movie on my computer. it could be any moving image – even text – thats the only thing she seems to somehow show interest in. her neurologist said – she’s like a baby, attracted to the tv.

    initially, we hoped and prayed she would recover. instead, she deteriorated to a condition we had no idea could happen.
    i wonder what’s next? how long will she survive? what else will she suffer from?

    my mom’s the dearest thing in the world to me. i could die for her. i wish i could take her illness, and she would recover.
    its been a cruel, heart-breaking year and a half!

    Mandeep / Reply
    • Dear Mandeep, I am so sorry to hear about your mom’s strokes. When I was doing the interviews for our study many relatives told me that, like you, they found the experience cruel and heart-breaking. This is why it is so important to do research into stroke.

      We undertook the study to improve care and support for people like your mom, but also to improve communication and advice for people like you who have to face very difficult situations and decisions, often out of the blue. We want relatives to feel that they are well informed and have a plan in place for both recovery and deterioration, and feel supported whatever the outcome.

      All best wishes, and wishing you and your mom all the very best in this most challenging situation


      Marilyn Kendall / (in reply to Mandeep) Reply
      • Dear Marilyn

        Many thanks for your kind words! Am touched by your concern.


        Mandeep / (in reply to Marilyn Kendall) Reply
      • Yes the experience is cruel and heart-breaking, to see my sister with all those tubes, and her wrist tied down to the bed so she couldnt rip out all the tubes, was the hardest thing of all, all the bruises on her wrist, she was not able to eat, the fluids they gave her, ended up giving her pneumonia, her lung collapsed, she had a mild heart attack, a further bleed in the brain and nearly died the second time, it took about 4 weeks for her to get to a stage that she could be transferred to a ward, there she became more alert and started to talk, and eat, I would have to go into the hospital to help them shower her, as the nurses complained they didnt have time, as they had to hoist her out of bed, put her in a bath chair, and I would wash her hair and the nurse wash her body. Never in my life would I want to experience what she has been through, she has passed now 14 months on, all the drugs she was now taking just made her heart fail, she hated her life and longing for her old life, it was extremely difficult for her, no walking, just in a wheelchair, incontinent, and in a lot of pain, it is a cruel thing for anyone to experience and also terrible for the family members, these people should be allowed to just pass, rather than letting them endure the most horrendous disability you could ever imagine. Best Wishes and God Bless you all. xoxo

        Kaz / (in reply to Marilyn Kendall) Reply
    • It’s a tragic story Mandeep. Sound like she is much loved and cared for and I’m sure that feeling stays with her, no matter what the stroke may take away. You can only do your best: the rest is God’s hands.

      Johnson / (in reply to Mandeep) Reply
  48. Scott: Thanks for this article. It truly sheds light on a topic my family and I have been battling with ever since my mother suffered a debilitating stroke as a result of an AVM rupture. Initially, we were told she’d never eat/breathe on her own – but after being life-flighted to a far superior hospital, she started showing signs of improvement. She went from a critical coma, to minimally conscious, to being discharged to a rehab facility. Once rehab completed, she actually went back home with my father. Obviously, all of our expectations and hopes were sky-high. Though her speech and balance were (and will always be) massively affected, she excelled with her PT and OT. Each week she showed signs of improvement, even had her feeding tube removed because she was back on solids. Then, however, she had to go under the knife to remove the remaining portions of the ruptured AVM to prevent future bleeds – and this is where everything went to hell. Post-surgery saw her struggle almost worse than she did upon release from the hospital to rehab. Her appetite disappeared, and she’s lost nearly 30lbs (weight that an already small woman isn’t suited to lose). Her speech and balance seem to have worsened, and her overall demeanor is that of someone who’s truly given up. In reading you article, I can’t help but wonder if we’ve all focused entirely too much attention on the rehabbing, and have been denying the fact that this stroke may have gotten the best of my mother. There’s always talk about reintroducing a feeding tube, and new forms of PT and OT to stimulate her brain, but the truth is, I don’t believe she wants to bother anymore. And, if my feet were in her shoes, I don’t think I’d want to go on. She was such a vivacious, outgoing, wonderful human being – and to be reduced to 24 hour in-home care, and a life of basically sitting most of the day in a chair watching TV has got to be utterly defeating. Yet, none of us have addressed that elephant in the room. This article has helped me see the necessity in — at very least — asking my mother what SHE wants, rather than everyone else focusing on what they want. I never knew, prior to this, what monsters strokes are, and just how crippling they can be. I don’t want my mother to suffer, and I know no one else does either. To anyone reading this article, and reading my post – I am so, so, so sorry for the losses you’ve all experienced at the hands of a stroke. I wouldn’t wish my experience on my worst enemy, and I’m sure many of you feel the same. Sending positive vibes.


    Matt / Reply
    • Hi Matt, I just read your post and wanted to say I’m so sorry for what happened to your Mum and for what you are all suffering now. It’s so unfair and it doesn’t make any sense. Stroke is such a horror. My Mum is in a similar situation to your Mum and some days I can hardly breathe with the horror and sadness. A year on its still a shock and I wish so desperately there was something I could do to give Mum back her life. Sending love and strength to you and your Mum.

      Laura / (in reply to Matt) Reply
    • Desr Matt, God bless you and your poor mum. I am in agreement that the best quality of life of the afflicted should be the aim, rather than somewhat illusory wishing rehab, surgery wtc would be definitive, lasting and final. The doctors are doing their utmost from the best possible intentions. It’s a very sad state of affairs none of us have any control over the condition.

      Johnson / (in reply to Matt) Reply
  49. My dad had a massive stroke and died 5 months after. I am being criticised that I didn’t bring him home and care for him. I was told by the hospital that it wasn’t possible , due to carers not able to give him the time required to do what was needed. He refused care a lot of the time. They said it was 24hr care required. Being at home was not an option. Should I have taught this more? Sold his house to pay for the care needed? I’m now so desperate and upset.

    Lea Edwards / Reply
    • Dear Lea,
      So sorry to learn about your father dying 5 months after a massive stroke, and that you are left with many questions about how things might have been done. Certainly you should not have had to sell his house, especially when there we considerable uncertainty about his future. I am sure you did everything you should have done in the circumstances
      The reason we wrote this blog was to try to explain to the professionals who care for patients with serious strokes that they must really talk with the patient (if at all possible) and their family carer in the weeks and months after a serious stroke so that there should be no regrets of nagging questions in the long run. I am sorry that the health service is generally not so good at doing this for people who do not have cancer, and will continue to urge professionals to talk about various options as soon as the illness is life-threatening, not just when a patient is obviously near to death

      Scott A Murray / (in reply to Lea Edwards) Reply
    • Dear Lea, the hospital workers were idiots who gave you bunk advice. We should have both right to treatment and right to refuse treatment.

      Johnson / (in reply to Lea Edwards) Reply
  50. My 82 year old father had a stroke a few month ago and is now in hospice care. Suddenly started eating and drinking and actually gained a little weigh. Last week he suddenly had a burst of life for s few days and suddenly it seems like he going back to sleeping more and cut back on eating and drinking. Could this be a bad thing?

    Bill / Reply
  51. Thank you, Thank you, Thank you, for addressing every stroke survivor’s ‘elephant in the room’ (regardless of degree of recovery/disability).

    annette dancer / Reply
    • Dear Marilyn and Scott,
      Thank you for this article, it helps me a lot knowing there are other people experiencing similar fates. My father had an ischemic stroke in December 2017 at the age of 89. He couldn’t swallow and was fed with nose tube. He also lost his speech completely and can only say nananana. He has hemiplegia and is incontinent.
      6 weeks after the stroke the doctors told me he would need a PEG otherwise he should be transferred to the palliative care section of the hospital and let him die. I agreed hoping that he would recover and at least get back some abilities. For me, it was not an option to change to palliative treatment after giving him 6 weeks of curative treatment. Fortunately, with the PEG and logotherapy he was able to learn eating and drinking by himself again. But nothing else improved. He is now in a nursing home and I think, he is depressive and unhappy although we visit him almost every day. It is so cruel, he can only say nananana, cannot read and I think cannot understand everything. He was a doctor of philosophy and literature in his former life. Now he is 91 years and he sometimes cries when I visit him. It is so difficult for me to understand all this.
      February 2020

      Dorothea / (in reply to annette dancer) Reply
    • Hi. My husband has had 4 strokes over a 10 yr period. The last one, feb 2019 has shown 2 arteries at back of neck are blocked , the left on the front of neck is also blocked & the front right is partially blocked. My question is how long will he live on medication only as this is all that is on offer

      Val Covus / (in reply to annette dancer) Reply
      • My brother has a stroke last Tuesday. He was conscious going into the hospital but at some point he became unresponsive. He was 57 and suffered from metastatic lung cancer. I live in a different state and was in constant communication with nurses and doctors who told me the prognosis was very poor. Because he was unconscious and I was his proxy I was left with the difficult decision to make about end of life care and cpr code. I know my brother didn’t want to be im a feeding tube but his wish was to die in our native country, close to his children and our parents. I reached his city of residence on Friday, 4 hours after he died, I felt terrible that he was alone the last days of his life, I wonder if he was.waiting for me and now I feel terribly guilty for the decisions made. He was in the ICU for two days and was moved to NIS on the last day, they were preparing for end of life care but he lasted less than twelve hours there. His blood pleasure dropped and his heart rate had increased by the afternoon (I was on my layover when they informed me of this) he passed shortly after that call. Here I am reading all your stories with tears in my eyes and still not convinced I did him right. Wondering was his last hours were for him under the unconsciousness, could he have reacted if I reached in time and talked to him. I would have love to assure him that I was there taking care of the things he wanted to accomplish, except taking him home.

        Mimi / (in reply to Val Covus) Reply
      • I’m dealing with my 67 year old dad who has had several strokes 2 of them being significant and the last one was said to be a moderate recovery. On top of the strokes they have found lung cancer that is already in his lymph nodes and growth in his wind pipe! They won’t do anything about the total blockage of left carotid or 80-90% blockage on right side! Oncology is saying call us when he is strong enough for treatment! Such a roller coaster ride! He can say a few things now 2 months later and he is still unable to use right arm and his right leg. Wheel chair bound and no answers!!!

        Beccah / (in reply to Val Covus) Reply

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