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?
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.
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.
Good luck to you. The missing part never goes away, but it tempers in time.
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.
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.
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.
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.
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.
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.
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.
She herself told you what she wanted. I believe she’d be proud of you.
Please be comforted by your good memories and know that you honored your mom's wishes.
I am sorry for your loss.