I'm 62 and lost my husband to Lewy Body dementia as well as stage 4 cancer. I'm coming up on the one year anniversary of his death, March 31st. I retired at age 60 to care for him and I was able to keep my promise to him and keep him at home. He passed in our house. He hallucinated the last year and was bed ridden the last few months. He would reach into his diaper and pull out hands full of feces and would have it literally everywhere. My main goal was to keep him as clean and shaven just as he would have wanted. I can say that I totally lost it with him a few times....especially when he would stiff-arm the bed rail and I couldn't turn him over....OMG!!! I weight train and am very strong so I got it done, but I'm full of guilt for the way I went off on him a few times and had to literally slap his hand off the bed rail to turn him over to clean him. How do I ever forgive myself?? I feel so guilty. Thank you!
The future is you live your life now, enjoy your relatives, grandkids and get out and see the world.
My husband has Lewy Body Dementia and he is getting non verbal but has signs of jerking things out of my hand, telling me he knows how to treat his diabetes and he is not walking because of fluid in his feet. He did it to himself. Instead of fighting with him I let him do it, he was mr know it all.
Now he says Why did I do it.
I am paying people to help me , I get out of the house and volunteer 3 half a day a week. It really does wander for my self esteem. Try it
You are human
Would your husband have gotten better care anywhere else? The answer is no.
You did the best you could out of love!
Now, it's time to take care of yourself and enjoy the good memories with your husband.
Take care.
and families that had their love ones become infect with covid 19 by the reckless action of their state governors by putting positive hospital patients into nurse homes and assisted living when these facilities had no PPE and nurse aid quitting. This is also for medical hospital staff, that when people infected from their homes were sent to these hospital their staff would write off these poor people knowing that when taken into nursing homes that the residence of these homes had underline condition they still wrote these poor senior off. This is a very solemn day for me it is my wife's birthday and I'm grieving for her and the over 60,000 that died because of our govement leaders.
PLEASE READ THIS POEM
Love is not something you see.
It's meaning everything to me
It's needing to have you in my life,
So much that I made you my wife.
Love is not something you hear.
It's always wanting to have you near.
It's needing to feel your lips each day
So much that no words could ever say.
Love is not something you taste.
It's never letting it go to waste.
It's needing to see you even when we fight,
So much or I'll miss you day and night.
Love is not something you touch.
It's knowing that you mean so much.
It's needing your skin when I'm in bed,
So much that you make me lose my head.
Love is not something you smell.
It's something that you're proud to tell.
It's needing to always make you smile,
So much that you make my life worth wild
Source: https://www.familyfriendpoems.com/poem/a-sense-of-lov see less
You should be congratulated for managing to keep him at home at the end of his life and caring for him like you did.
"Guilt is a gift we give ourselves."
No one gives you guilt. If you feel you have given it to yourself, just say, "No, thank you" and move on.
Your experience with your husband being difficult to turn brought a smile to my face. My Husband had very long arms. The first time the CNA and I tried to turn him in bed he reached down and grabbed the bed frame and would not let go, in effect we were trying to turn him as well as the bed! We gave him something to hold and I started explaining to him what I or we were doing before we started anything and that seemed to relax him.
There are always challenges and ways around them.
You have nothing to feel guilty about. Use what you learned, share the tips that helped you get through some difficult times, so that you help someone else.
I meant to start my post below with condolences.
I am so sorry for the loss of your husband.
It’s awful to watch a spouse decline and then lose them.
I am sure that you miss him very much.
I remember crying in my therapist’s office one day about losing my temper and thinking that I was the most awful person in the world.
Do you know what his response was? “I am a therapist and I lose my temper. I apologize and move forward by realizing that I am an imperfect human being and forgiving myself.”
I truly grew to respect my therapist more and more because I never felt judged by him at all.
Get rid of the trial and jury. Stop punishing yourself with a harsh sentence. Instead, educate yourself on human behavior.
Please stop judging yourself. Please forgive yourself.
I bet if you made a list of all the wonderful things that you did for your husband verses the few times that you were human and lost your temper, you would be pleased with your behavior.
Your husband is at peace now. He would want nothing more than for you to have joy in your heart and to be at peace.
Put your mind at ease. He knew that you loved him.
In time, you will start to remember better times.
I know that you aren’t able to forget the challenging times. That’s impossible to do but cherish the good times.
Take care.
You're expecting perfection from yourself and now doling out punishment to yourself for not being perfect. And you're doing this one year later. Will you be doing it next year, and how about 5 years from now, and a decade from now?
Don't expect perfection from yourself when you don't expect it from others. Unless you are a saint, and even then, it's illogical.
If you're unable to forgive yourself for an imagined 'sin', please seek therapy to get past it so you can live what's left of your life in peace and tranquility. That's what your husband would WANT you to do, after the huge sacrifice you made for him for all those years of caregiving.
Best of luck
I know that there were times when I would lose my patience with my husband and holler at him, and later have to go back and apologize to him. Because he had vascular dementia, sometimes he would remember, and sometimes he would not, but I always remembered, so it made me feel better to apologize whether or not he did.
My husband will be dead 6 months in a few days, and initially I was like you and felt guilty about my lack of patience with him, but then I had to remind myself, that I did the very best I could for the man I loved, and despite everything he knew that I did as well. He got his wish to die at home, and as hard as that was to witness, I am so grateful that I was able to honor his last wish.
Our husbands are now looking down on us and are so very grateful for the great care that we gave them, despite our shortcomings, so please don't waste another minute feeling bad. He wouldn't want you to. Instead try and focus on the many great times you had together. God bless you my sister in grief.