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My mom recently passed away and I am racked with guilt. She suffered a massive stroke that from what the MRI showed affected almost all of the right side of her brain. What that meant was that mentally she was seemingly "all there" in that she could understand everyone and speak through the right side of her mouth, but physically she had left side neglect (paralyzed). She kept failing the swallow test and had a feeding tube inserted thru her nose, and within a week after her stroke she was unable to open her eyes on her own and when the Drs checked on her they had to lift her eyelids. She then developed pneumonia AND was in agonizing pain from an undiagnosed back injury sustained when she fell during her stroke. The Drs said she could qualify for aggressive rehab but they had no idea how much recovery was possible especially with the back injury preventing PT, and that at best she would always need 24/7 assistance, which her advance health care directive stated she would not want. So I opted for hospice to give her some relief from the back pain and because she herself had stated this was not how she would want to live. The morphine eased her pain and she passed within 2 days. It all happened (stroke to death) in 10 days time. I cant help feeling like I should have tried harder to see how much recovery would have been possible. I am racked with guilt. I miss my Mom. I cant go back but I was hoping someone else out there has experience with hospice and going through feeling responsible for ending a loved ones life?

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You followed her advanced directive. She did not want to suffer and hospice made her comfortable. You did the right thing but you may be going through some sort of PTSD. Have you sought a bereavement group? Have you called Hospice for some grief counseling? Usually Hospice provides counceling to family after death
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MissMyMom23 Apr 2023
My Dad passed a year ago in a similar manner, and I was just coming to terms with his death when I got the call about my Moms stroke. It was the worst 10 days I could have ever imagined. I could not find a good grief counselor after my Dad, but a friend did yesterday recommend someone who is close to me and I am going to her next week. To not only have to make the decision - regardless of the fact that they stated when healthy they would want it this way - and then watch the decline and death is not something I would wish on anyone. Thank you for your reply. So many kind and helpful people on here.
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My mother had every ability taken away by a huge stroke, followed by a feeding tube placement and intensive rehab. Despite every effort by both her and the therapists no recovery ever happened. She spent four years in a nursing home trapped in a body that would do nothing, but with an intact mind. It remains the cruelest thing I’ve ever witnessed. Given an alternative, I have no doubt my mother would have welcomed leaving this life much sooner, either not surviving the stroke or dying soon after. You’re not responsible in any way for the events with your mother, and in an impossibly hard place, you made a loving decision that I strongly believe she welcomed. She was blessed to have you in her corner and I wish you peace
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That sounds like a horrible way to live. You did the right thing imo.
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Oh my gosh...I can so identify with what you are going through. Im so sorry for the loss of your mom. My 93 year old mother was in her own apartment and doing well until she fell in January. I had been noticing more dementia type symptoms for the past year, along with some very negative and aggressive behaviors toward me and my husband. Luckily she did not break any bones , and CT scan showed no head injury but she developed delerium in the hospital and some concerning lab tests. Finally diagnosed with Alzheimers and undifferientiated Lymphoma. Due to her age and frail condition, and after consulting with medical professionals and following my own heart knowing what she would want....opted for no bone marrow biopsy or chemo. I researched chemo for very elderly 90+ people and all the studies point to only another several months survival, after suffering theough multiple injections and nasty side effects. I feel guilty too, brcause many articles tout trying chemo for a very short remission of only 2-6 months in that age group. I too had to make the difficult decision to have mom placed in AL with hospice now coming in. Your mother told you she did not want to live with all that she had been suffering with..and you made the loving choice to honor her wishes and let God take her home when it was time to end her suffering. She would not want you to now suffer with guilt and second guessing your actions. Yes, guilt is hard and eats away at our well being..but you were a loving daughter who made the right decision so that she did not have to linger in a very reduced quality of life. Keeping you in prayer.
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The guilt part is the hardest.

The last week of my mother's life is the most difficult and heartbreaking thing I have ever done. I have been hiding from this forum lately because it just fires up my anxiety and all to the max. I absolutely understand the sense of guilt.

The thing is though, I would look at the fact that she was getting worse, not better, post initial stroke. The stroke incident itself afaik is not the end. Parts of the brain that survived initial incident can still die off. The week I moved my mom in in 2022, her eldest brother also had a massive stroke. Sounds very similar, his blew out the left side of the brain though, I think. The first day or two he was able to speak (with great difficulty), and was upset that he was in hospital. He understood in that moment at least what was going on and told his wife he wanted to go home (yeah, after half his brain was basically just.. tatters). The hospital said he couldn't because his arrhythmia was out of control? ... And my uncle must have through sheer willpower alone heard that and somehow went '... Ok' and his heart ruthmn normalized. They brought him home on hospice. He lasted nine days. After a day or two he could no longer speak, etc, and continued to decline. The last couple of days he was not awake. I think he was 87 or 88. Was still mountain climbing / hiking / world traveling. So he was beyond just healthy for an eighty something.

Rambling all this out to say -- you did the right thing. The act of putting someone on hospice is not at all like pulling a plug or anything of the sort. Some ppl are on hospice for a long time, and can hang out there for awhile. It is basically nature taking it's course without having to suffer through any physical or emotional stress or pain while it does so. The two comfort kit meds are for that. My uncle was nine days, my mom was five months, and those last months she was at least able to relax and not stress (though things went kind of batty crazy when the sundowning kind of stuff started, which is like the screaming or ranty or angry stuff. ... And I am trying to not let that bother me because pretty much every time, she recalled a different conversation than what actually went down the night before. Her recall would be that it was all very calm sort of discussions.)

You did right by your mother. Again hospice isn't a switch to flip that instantly changes the outcome... As it was so soon, you made the right call and she was able to relax out of pain.
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I’m so sorry for your loss.

You certainly didn’t rush into your decision. You stepped up and acted responsibly.

Have no doubt about your actions. Your mom knew that you loved and cared for her.

Wishing you peace as you continue grieving the loss of your beloved mother.
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Thank you to everyone who wrote such kind, supportive words. I needed to hear them.
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MJ1929 Apr 2023
I suggest reading the book, Healing After Loss, by Martha Hickman. It's a really good little book to have at hand, and you only read one page a day so it isn't too much to digest.

Good luck to you. The missing part never goes away, but it tempers in time.
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Missmymom - I did absolutely the RIGHT thing. If I were in your mom's situation, I would hope to be released of the suffering, as quickly as possible. I would not want to be in agonizing pain and slowly dying for months or years on end. That would be so cruel. Your mom was very wise to have written down her healthcare directive and gave you clear instructions on what she wanted. You have nothing to feel guilty about.
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I think you did the wisest and most selfless and loving thing.

I know its easy to feel guilt at this stage, but I think you will one day see you were correct.

A similar thing happened with me in re my dad.
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If I were your mom, I would say a huge thank you for following my wishes, and not subjecting me to something that I did not want.

Also, as your mom, I would want you to feel peace, and know that I was proud of you for providing me what I NEEDED in my last days.

Rest easy, dear daughter.
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Imagine being "all there" yet unable to move your left side or swallow, and to have to suffer through excruciating back pain and pneumonia. To me, that would be pure torture if it continued, and believe me, had she recovered from the pneumonia, the rest of it would have continued for the rest of her days.

You did exactly the right thing, and the only thing you should be suffering from is missing your mom. That part I can absolutely understand, but not the guilt.

What she wanted is exactly what you did, and you couldn't have done a better job for her last days. I commend you.
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It sounds like you honored her wishes and advocated for what she wanted should she be incapacitated, which is a wonderful and loving thing to do. I'm sorry for your loss.
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God takes us when our run is over here on earth. Not hospice. I had hospice for both parents. Mom passed in 7 days of CHF, dad in 19 w a brain tumor. Your mom it was a massive stroke.

I actually prayed God would've taken them sooner....whats the point in prolonging an end of life experience for ALL OF US? I feel relieved they're at peace now myself.

My condolences on the loss of your dear mom.
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Sorry for ur loss.

U do not mention Moms age. I think you did the right thing. The doctor told ur Mom probably would not do well in therapy. Not fun having a feeding tube.
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MissMyMom23 Apr 2023
She was 82. She was - we thought - in great health - but becoming more frail with lack of much exercise through Covid ,and a fear of falling (she had fallen in 2016 and broken her knee cap, and she was never the same).
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Hi Miss,

My Dad passed easily in his easy chair in just seconds. But both my Mom and my brother passed in hospice care. My Mom had CHF end stage and my brother had a diagnosis of Probable Early Lewy's Dementia, which was --mercifully in my opinion--shortened by a sudden sepsis from a tiny shin wound, and by subsequent failure of antibiotics to do anything but cause severe and profound diarrhea. He begged to go home on Hospice and died within two weeks.

As a nurse, no, I never felt guilt.
Guilt assumes responsibility that was never yours.
You didn't create the stroke.You couldn't have cured the stroke.
What you feel is grief, the "other" g-word, and your making the choice to call it guilt may be adaptation some grief experts suggest we use to avoid having to move into grief's finality. We understand that in that finality we must endure the unimaginable pain of loss, which may only be helped with time.

I hope that you will have had some meaningful conversations with your Mom before her illness and death? I hope she may have told you that she would not wish to live impaired. I have certainly had these with my daughter now I am 80 and she 61. We know that one another doesn't feel strong enough to struggle and endure the torment of debility and struggle. That we would prefer peace.

The only real way through grief is to endure, to move through it not forgetting to celebrate love, joy, beautiful memories, to gather strength and love from those around us.

My heart goes out to you. Were you my daughter I could tell you that you would have done the right thing for ME. I am sorry you are in such agony. Again, let the tears wash you clean, let them relieve your pain, but remember the beauty also.

My brother's death was devastating to me. He had been what I so often here tell others the Hansel to my Gretel in every dark wood of life. It helped me so much to journal, to write him long letters there that we had exchanged our entire lives. It helped to collage them with beautiful things that made me think of him, to celebrate my great good luck in having him. It helped me face my loneliness without the one thing I had trusted and counted on my entire life.

Please take care of your kind and gentle self. I wish you the best.
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I am so so sorry for your loss.

I had a LO that had a massive stroke too & passed within 1-2 weeks. It was a shock for the family. I have since been told that the chance of having further strokes with 2 weeks of the 1st one is very high. Either another massive stroke that ends life or smaller strokes that keep robbing more function.

Recovery from stroke varies so much. It is impossible to say of course what 'could have been' for your Mom. .. It's easy for me to say don't go there, what happened, happened. I understand the 'what ifs'. You are grieving. It will take time to process the shock & loss.

A friend's Mother had a massive stroke. 5 years of minor strokes followed, each one stealing.. mobility of one side, then both, then speech, emotion regulation. Awful.

My LO is a stroke survivor. Hemi-plegic, swallowing issues, incontinence, memory & emotions effected. Independant, driving, shopping to wheelchair bound & completely dependant needing fulltime care. Stable but no expectation of further gains. This is life now.

I don't mean to minimise your great loss in any way. But your Mother was spared those scenarios.

Kind thoughts to you today.
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You didn’t end her life by entering her into hospice. What you describe as her prognosis would have been life wracked with pain and suffering. You wouldn’t want that for your beloved mom.

She herself told you what she wanted. I believe she’d be proud of you.
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If you were my daughter, I would thank you for your merciful treatment.

Please be comforted by your good memories and know that you honored your mom's wishes.

I am sorry for your loss.
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