Living and dying well after stroke

In this blog for our #LifeAfterStroke series, 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. 

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 this 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 to 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.

Useful links from the Primary Palliative Care Research Group, University of Edinburgh:

References may be found here. Scott Murray’s profile may be found below.

Scott Murray and Marilyn Kendall have nothing to disclose.



Living and dying well after stroke by Scott Murray

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

56 Comments on this post

  1. Avatar

    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 ..at 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 her..how 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
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      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
  2. Avatar

    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
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      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
  3. Avatar

    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
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      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
  4. Avatar

    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
  5. Avatar

    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
    • Scott A Murray

      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.
      Scott

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      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
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      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
  6. Avatar

    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
  7. Avatar

    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
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    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
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    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
  10. Avatar

    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
    • scott Murray

      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.

      • Avatar

        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
  11. Avatar

    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
  12. Avatar

    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
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      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
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    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
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      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
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      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
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    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
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      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
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      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
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    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.
    Donna
    March 2020

    Donna / Reply
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      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
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      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
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        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
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      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
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      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
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      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
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        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
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          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
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      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
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        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
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    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
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      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

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

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

        Hugs!
        Mandeep

        Mandeep / (in reply to Marilyn Kendall) Reply
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        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
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      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
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    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

    Matt / Reply
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      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
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      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
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    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
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      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
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      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
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    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
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    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
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      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.
      Dorothea
      February 2020

      Dorothea / (in reply to annette dancer) Reply
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      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
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        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

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