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!

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I am so sorry that you are still carrying around this unnecessary guilt, after almost a year. We are all human, and those of us that have been caregivers for any length of time, if we're honest, can say that we, at different times in our journey lost our patience with our LO, and perhaps said or did things we later regretted. That's actually very normal, believe it or not.
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.
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Reply to funkygrandma59
emmasmudge Mar 14, 2021
Thank you so much! After reading all the responses on here, I feel like I am normal. God bless you as well
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I don’t know anyone on this earth that hasn’t lost their temper at one time or another.

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.
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Reply to NeedHelpWithMom
emmasmudge Mar 14, 2021
Thank you! This is wonderful advice!!!
You’ve been through a living nightmare. I recommend the groups of GriefShare, they’re available many places to help you walk through all that happened. You did your best in impossible circumstances and I hope you’ll be able to move forward in peace, knowing you’re only human
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Reply to Daughterof1930
emmasmudge Mar 14, 2021
Thank you!
Two thoughts:
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.
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Reply to Chickie1

Hi EmmaS
As I read your post, I couldn’t help but think “my goodness this lady is my twin”... I just lost my husband in Dec 2020 to Frontotemporal Dementia and by God’s amazing Grace, I was able to keep him at home. I quit 4 different jobs thru the years to care for him. I gave it my all and can honestly say I have no regrets save that like you I have been struggling with guilt over the difficulties that ensued once he was bedridden in the hospital bed. My hubby kept thinking he had to get up to urinate, but his brain could no longer make his legs operate properly meaning if he got up his legs would simply give way and he would fall and risk breaking something like his bones. Of course he couldn’t remember all of this he only knew he had to go, so he would do all possible to try and pull himself out of the bed using only his very strong arms.....I literally had to lay my body across his to keep him in that bed. One night I truly thought, if he doesn’t stop trying to get up, I’m gonna knock him out with my bare hands. At one point I looked up to heaven and cried out “Lord what do you want from me? If he breaks something we’re gonna have a whole new set of problems” the Lord heard my pleas and he eventually settled down once hospice intervened. But now that he is gone and my mind is processing the trauma, I am struggling with the guilt as well. Thru my faith I believe I did all I could, but the job was difficult, the battle many nights was real, and I think my guilt is my mind trying to resolve what I lived thru at the end. He was only in the hospital bed for 12 days before he passed away, but those were the toughest days and nights. I started counseling while I cared for my husband which helped immensely and continues to help me now. Perhaps counseling could help you get past the guilt. YOU DID THE BEST YOU POSSIBLY COULD.... LET THE GUILT GO.... ITS TIME FOR YOU AND ME TO LIVE AGAIN!
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Reply to NeesaLee
emmasmudge Mar 14, 2021
Yes, our stories are quite similar. My husband also had spinal stenosis which rendered him handicapped. Before he was bedridden, he would just get up thinking he had to pee and end up wondering the house and getting into all kinds of mischief such as pulling cushions off the couch, pulling the sink drain plug out of the sink, pulling up the return vents from the floor.....just really random things, but he would fall too and we had many trips to the ER because of his falls. I ended up having to restrrain him at night otherwise neither of us got any sleep. At first I tried the bed alarms which went off all the time. I'm going to take your advice about the counseling. Thank you so much!
I’m very sorry for your loss. It was great your husband could be home and that you were able to care for him-such a blessing! We are only human and sometimes we do lose our temper or not have enough patience in a situation. Your husband knows you loved him, and likely forgot how upset you became a time or two. As I Christian,I believe our LO go back to full light in a place of pure love. He probably longs to hug you and tell you it’s ok, he didn’t hold it against you, and to let it go. You did the best you could each day with grace and love in your heart. Your husband knows that- you need to accept that. Ask God to lift that heaviness from your heart- he can! Anger and regret are hungry beasts; refuse to feed them. Time helps, too. Hugs to you-
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Reply to DadsGurl

I am guilty of the same thing. My wife has gotten feces all over her hands and examined like it was a new invention. Just last week, while waiting on rescue to take her to the ER, I was cleaning her hand and just turned around to get a rinse cloth, When I turned back, her hand was worse then when I started. Yes I lost it. I think most of us do. We stayed tired all the time. Our LO doesn't give us any positive feedback for our hard work. We get frustrated.
I do the best I can and when I do "loose it", I always apologize and promise myself " I'll never snap like that again" It is NEVER physical, just words spoken harshly, but they still hurt. She probably does not remember it 10 minutes later, But I do for weeks.
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Reply to garylee
RedVanAnnie Mar 14, 2021
You must sometimes just want to scream!!!
After you holler and snap, you can even say out loud to your wife and yourself, "Sorry about that honey, but poop makes me crazy." Your wife doesn't need to comprehend what you are saying; you are saying it out loud for yourself.
Hands-on care taking is one calamity after another. I hope you can take heart at hearing similar stories from other care takers on this forum.
You are being too hard on yourself. There is nothing to "forgive." It is very "human" to express anger or frustration at an unfair or stressful life situation.

You should be congratulated for managing to keep him at home at the end of his life and caring for him like you did.
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Reply to dragonflower
emmasmudge Mar 14, 2021
Thank You!
This is a poem dedicated to the families that lost love one, like my wife of 54 year of wonderful years of marriage...
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.
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: see less
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Reply to joelfmi118
Petite1 Mar 14, 2021
I am so very sorry for your very sorry. The poem made me cry. I truly know how you are feeling.
It is strange part of the grieving process is the mind will work overtime to find SOME REASON to feel guilty. That is very normal. Are you Jesus able to walk on water? No--you are a human being and being so you have to learn to forgive yourself for not being Jesus and absolutely perfect. Caregiving is extremely stressful and hard, and you sacrificed your life to care for him. You did did your duty, and the greatest blessing you did was not put him in a nursing home. Nursing homes are where true neglect happens--patients lay in their feces and urine for hours due to lack of staff, spread scabies, lice among patients, and contagious diseases very commonly spread around including c. diff diarrhea due to the antibiotic salad doctors give them. Most people cannot deal with feces so they stick their loved ones in nursing homes, or financially unable to care for them because they ARE a full-time job. You did your duty very well. I'm sorry for all you been through, but now is time to reflect on yourself and be your own caregiver. Take care, and you may want to even seek a job and just start living again. Your husband's suffering is over and no longer afflicted by pain and confusion; only the living will suffer and since you are alive you have to deal with being alone, grieving, and forging on with the business of living.

What you went through representing a lot of suffering on your part--is all in the past. It's over.

Your husband's illnesses and suffering. It's over.

I guess that old saying "Be calm and carry on" is the best advice.
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Reply to cetude

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