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My husband had Progressive Supranuclear Palsy (PSP) and I looked after him as the disease progressed for 5 years. The last time he went into the hospital they suggested that I put him in a care home. I feel so very sad that I let that happen. He was falling a lot and they said that was the best thing I could do. I don't think I should have let that happen. He was fairly happy at home with me caring for him. After he went into the care home he got a lot worse and was so unhappy there. He lost about 50 pounds. He died 4 months later with the help of MAID (Medical Assistant in Dying). He hated the food and a lot of times he would say to me "They don't care!" I feel I will never get over saying to myself. "I should not have agreed with the hospital and sent him into a care facility I should have let him come home where he was eating a lot better and was a lot happier."

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You likely did the best you could at the time. I can find times I blame myself for placing my mother in a facility that led to a newly hired aid dropping her (going against protocol for lifting her)which caused both femurs to fracture which then led to serious bedsores which eventually caused her death this past April. At least I did change facilities the last 8 months of her life.

It can be hard for some of us to be kind to ourselves. Perhaps make a list detailing all you did that was kind and loving. It can take time to emotionally heal.

Your husband very well may not have continued to prosper at home as his disease progressed and you had a huge amount of responsibility for his care and well being. I hope you at least find times of peace in the future.
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I'm sorry for your loss. As you well know MAID isn't instantaneous, he had a lot of time and was counselled about his choice. Perhaps being in the nursing home did have him contemplating the disease and what his future was going to look like, but being at home would not have fundamentally changed that reality.
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The facilitator of the Support Group that my friend and I now head always said..."Don't Should on yourself"
You did what you thought was right.
The doctors, medical staff also thought that it was the right move to make.
Of course you were sad to have to have made the decision to place him in a care facility.


Unless you have a Crystal Ball (mine broke a long while back, still have not found anyone to fix it) there is no way that you could know what would have happened if you had kept him at home. He may have had the same decline. there is no way to know.

Now I can say all the "right things" that everyone says...
But I'm not cuz it is meaningless.
What I will say is...
Grief has it's own timeline.
There will be good days, there will be days where you just want to crawl into a hole.
Here are 2 sayings I have stuck on the calendar above my computer

Grief never ends
But it changes
It is a passage, not a place to stay.
Grief is not a sign of weakness
nor a lack of faith.
It is the price of LOVE.

and

Crying is a way your eyes
speak when your mouth
can not explain how broken
your heart is.

He is still with you.
Remember him in the things you do, the places you go.

I am active in Veteran organizations and one of the things that is said is this...
A soldier dies twice; once whenever he takes his last breath; and he dies again when he is forgotten.
This is why names are read at ceremonies.
So talk about him so that his name is spoken and he is not forgotten.
((hugs))
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NeedHelpWithMom Aug 2023
I absolutely love your response! So beautifully said.
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To go back, to worry and try to blame is a way of avoiding the real work of grieving the FINALITY of your loss. You did the care as long as you could. You made the best decision you could. This is not a time for guilt, as you didn't cause what happened to your dear husband and you could not fix it. You will always have some of these feelings. With time the sharp edges will smooth, but we always wish we were Saints enough to do it all perfectly. We are human beings. We have limitations. I am so very sorry for your loss. Let the guilt leave and the grieving begin. I surely do wish you healing with grace and with time.
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ElizabethAR37 Aug 2023
Absolutely agree. It sounds like OP did the very best she could for years, then had to participate in an extremely difficult decision (with medical advice). The outcome could well have been similar no matter where OP's spouse spent his last months. Given his very unfortunate health situation, I'm glad he had some agency over his EOL. I hope I do when the time comes.
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What could you have done better? Nothing. Not one thing.
You did the very best you could at the time and under the terribly hard circumstances. Your husband knew that and now you must learn to accept that.
It does no one any good to relive the could haves, should haves or would haves as all that does is keep us stuck in a place where our deceased loved one would NEVER want us to be stuck.
So I hope and pray that you'll realize that you did the very best you could do and that in time you'll have peace about that.
God bless you.
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<(((((((((((((HUGS))))))))))))
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You did everything you could and then some.

For many people, passing away in a facility is the 'best' way for them and for their loved ones.

CG at home is hard--you know that. What could you have done better? Nothing. Please don't beat yourself up over what 'might' have been.

We're doing EOL for my MIL in home. She is lasting far past what the Drs said she would. My DH is now profoundly depressed, and it is 100% due to the fact he is so utterly burned out with the crazy schedules his sister sets up--and then can't follow. His mother is angry, nasty and impossible to please.

By the time she passes, I don't think a single tear will be shed by anyone.

If she has been placed in care 8 months ago, the kids wouldn't all be depressed, angry & exhausted all the time.

In time, you will 'forgive' yourself for doing what was best for your DH. His decline when he was moved to the care home is probably unrelated to the fact he had been moved--it simply was what it was.

Give yourself credit for the care you WERE able to give and don't waste energy on beating yourself up over what you 'feel' wasn't the best.

((Hugs))
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I will reiterate what everyone else has said so beautifully. You did your very best.

It’s obvious how much you loved your husband. You made the right decision to place him in a facility.

I am sorry if he wasn’t happy there. Of course, you wanted him to be able to enjoy home cooked meals and so on. Know that he was kept safe which was so important.

You miss him and you’re second guessing yourself. Please be at peace knowing that you did exactly what was needed at the time.

My dad had heart issues which required bypass surgery. He was fully aware of the risks of having surgery and decided to go for it.

My father came through the surgery well but while he was in the recovery room in the hospital he had a stroke.

My mother was beside herself. She said that she shouldn’t have allowed my father to have heart surgery. She blamed herself for his stroke. It broke my heart to see her in mental anguish over something that she had no control over.

I told my mom that if daddy wouldn’t have had the surgery he would have died, that he was aware of the risks and that it was his decision to make. I asked her to please stop blaming herself for his stroke.

There is a part of me that feels like we die when our number is up. We see over and over again that if it isn’t our time we don’t die no matter what our circumstances are. When it is our time, we leave this earth. It’s unavoidable.

I am so very sorry for your loss. Cherish the good memories that you had with him. Your husband wouldn’t want you to blame yourself. He is at peace now and would want you to be at peace too.

Look to see if there is a griefshare group in your area. griefshare.org
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I think all of us who have dealt with a Loved One Passing thinks In their head " I could Have done better - If Only I Had ____ " Let it Go - he is gone. You did your Best He kept falling a Lot and Lost weight that is usually a sign of dying .
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I did the opposite to you, and I still had ‘what if’s’. I moved in with my mother, and cared for her there. She died from her cancer about 24 hours after I let the locum (it was a weekend) increase the morphine level in her morphine driver. I’m fairly sure that the higher level brought death on sooner.

I still have to tell myself my own truths – she was going to die very soon, and a quicker death meant less suffering.

No matter what you choose, there would always be things that you could (not should) have done differently (not necessarily better). And death would always have been the final result. Forgive any choices you made.

Love and sympathy, Margaret
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I am so sorry that you are grieving about your husband. I have the same feelings of regret about my mom but I am beginning to understand something.

Hind sight is clear. You are evaluating decisions you made in a time where you were very stressed.

However, you will never know what could have happened had he stayed home. He may have declined faster or had a fall. You would now be wandering if it would have been better to place him where he had the appropriate care. We do not know the outcome of another alternative. We only live with the decisions we make.

My prayers are with you to find comfort and peace.
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