How to forgive yourself for losing it with your spouse with dementia?

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How to forgive yourself for losing it with your spouse with dementia?

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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!

Alzheimer's & Dementia End of Life Guilt

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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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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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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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Dear Emma, many times we look back at our behavior towards our LO, and suffer from regret and guilt. I won't say that those are normal emotions, but they're certainly not uncommon, nor are they helpful. Most of our behavior (the caregiver's) is a knee jerk reaction to our LO's behavior and vice versa. Certainly we get angry when they don't respond to a request or when they become belligerent. Blame it on the human condition. Mother Teresa you were not nor were you expected to be. The death of a spouse is one of the major stressors of our life. Overcoming the grief of your loss is a long road, and adding guilt to it makes it much worse. So he's gone now and what can you do? You can apologize to him for any behavior you regret. Is he buried near by? Go there, speak to him. After three yrs I still visit my wife's grave and speak to her and talk about our family and occasionally say I'm sorry if I've hurt her in anyway. It's very therapeutic, I leave with a smile. I say there are 3 Gs that are common emotions at the loss of a spouse- grief, guilt and gratitude. Concentrate on gratitude. There's an excellent book that can help you, “Getting to the Other Side of Grief, Overcoming the Loss of a Spouse”, by Susan Smeenge and Robert DeVries. Find it in your library or order it from Amazon.

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Thank you so much for your kind words and response. I have his ashes and have been taking them to our special places. I do talk to him all the time and even while he was living I apologized hoping he would understand. I will definitely get the book. I have two neighbors who lost their husbands recently. We are all young to be going though this. we range in age 58 to 62. They all express quilt. I think I will pass this book on to them

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What human has ever been completely perfect? Has ever acted totally without fault? Especially under stressful and trying situations such as full time care giving for a loved one suffering from mind-bending dementia.

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

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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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Thank you! This is wonderful advice!!!

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emma,

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.

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I do miss him, but at the same time, It was an absolute blessing when he went.

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If there is anyone that has not “lost it” while caregiving I would be the first to suggest sainthood. I lost it on occasion. I would apologize to my Husband and hope that somewhere in his mind he knew that I truly was sorry.
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.

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Thank you! Yes, sometimes he knew what I was asking him to do and when he did turn over, I was praising him and telling him how helpful he was and other times he would just flat out tell me no!!! I know he would never have done these things in his right mind. He was a sweatheart of a man

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In my caregivers support group just yesterday, I heard this quote.
"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.

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That is brilliant!!! Thank you!

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You kept your husband home that whole time. The love and sacrifice totally outweighs the times you were less than perfect. Look at the whole picture, pat yourself on the shoulder and do affirmations every day about how you gave your loved one the best possible life that no one else would have come close to doing. Nobody would have kept it together under those circumstances and most would have given up. You never gave up even when it got really bad. I commend you! You should be proud and feel good about the unconditional ❤ you exhibited.

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Thank you so much!

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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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Thank You!

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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.
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

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I am so very sorry for your loss.......so very sorry. The poem made me cry. I truly know how you are feeling.

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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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You are a miracle to keep your husband at home. You have nothing to forgive yourself about, you need what needed to be done to help yourself and him. you are wonderful to keep him at home but you needed help and I can't understand you not getting a aide to help 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

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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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We are all human and have our limits.

Instead of feeling guilty because you lost it a few times feel proud that you stuck by your man through both the good times and the bad. Believe me, you gave him the best care he could get because you gave out of love.

I for one salute you in respect.

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There is a song that became very popular when I was caring for my Husband and so many of the words, while not written for my circumstance said how I thought our life was going. My Husband had dementia. Think of that and listen to the song "All Of Me" by John Legend.

The other song that was popular at that time was one sung by Meghan Trainor and John Legend. Please listen to "Like I'm Gonna Lose You". That was how I felt caring for him, that I was losing him, that no day is certain, you have to make the most of what you have.

I am listening to All of Me while writing this and for some reason the key board is getting very blurry.....

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Guilt is a unique kind of torture we put ourselves through and in my own experience, no amount of talk therapy or good advice is going to touch it. It feels to me like while you were focused on your husband's suffering, you suffered your own trauma in caring for him and now you are re-traumatizing yourself with the guilt. I have been working with a trauma therapist to deal with my own guilt, with good results. Look up Neurowiring with Jayme Hartwig. She offers a free consultation and very affordable sessions via Zoom. Blessings and peace to you.

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I completely understand your feelings. I feel this way so often, more than I can admit even to myself. I don't know about your particular situation, but it's just me and my surviving parent alone together. Some family members try to sympathize with my situation, but (and not to shun the well-intentioned ones who really do feel care and concern), those folks truly do not understand. Having been a healthcare worker who took care of patients' needs like the ones you are describing, never bothered me at all. I had the ability to go home after the shift. It sounds like you did everything in your power to to do right by your husband. You did everything that was asked of you. Yet, as no one is a perfect caregiver all the time 24/7, even the pros, you need to forgive yourself. You cared enough to tough it out through the worst times, and, being an imperfect person, as we all are, forgive yourself. Give yourself a hug. You deserve it.

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Pray about it but in the meantime you'll have to learn to live with it until you forgive yourself.
Caregiving is very hard. Especially if you're doing it alone 24 7.

You need patience of a Saint, which no one has.

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The love and care you gave your husband was unconditional. If you think he would have received better in a facility with strangers taking care of him you are wrong because that is just a job to them no matter how great they are. You provided a safe place in his own home sacrificed yourself to take care of him. There are times we are so tired we lose our patience and have to be strong with them but it does not mean you did it viciously but what needed to be done. Have no guilt and give yourself a break. God is the only one to judge not you.

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You handled it as best you could under the circumstances. Imagine if he started eating his feces? Things could have been worse! He doesn’t remember you doing that if it gives you peace of mind knowing that. Also if he was in a facility god knows what they would have done in that situation. Make a list of all the good you did for him I’m sure it outweighs the few times you have guilty feelings. You are a good person move on with your life. If guilt still continues to bother you do something nice for another person. Good Luck to you

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You are in such good company here with caregivers who sometimes get angry at their LO's! I certainly lost patience with my husband during his illness and decline. I would say to myself, "You can't be angry at someone who is dying," but, then, I would realize, "Yes, you can!" And sometimes you have to holler! You might be able to say, "I love you, but right now you are driving me crazy!" My own "go to" rant at my husband was usually, "I'm going to take you to "The Home!"

Do not beat yourself up for expressing your honest and appropriate frustration with your husband's behavior. You were amazing to do as much for him as you did.

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Thankyou for your words. Just lost my dad to alcoholic cirrohsis and thre last 6 months was so hard and now that he's passed I feel bad having gotten angry at him at times. Anyways i found comfort in your words. Thanks again 💝

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Don't blame yourself, please. He would have died no matter what you did, and dementia can make anyone lose their cool. Their actions don't make sense, they can't be reasoned with, and they do a lot of things considered heavily offensive or disgusting without batting an eye. If you ask me, you did more than a lot of others would have done for their spouse. A lot of other spouses send their spouse to a memory care facility and they might visit over chat or something since they can't go in. You have nothing to be forgiven for, as you did all that you could.

I think the issue here, is you remember the bad times. There were good times, right? You helped him a lot, right? Think about all of the good you did, if you're going to feel bad about a little bit of bad.

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This is so important. Think of how your husband loved you and how he expressed it before dementia took over his brain. Would that man have wanted you to feel guilty for years? I don’t think so. He would want you to remember things like how you met, what you loved about him enough to marry him, other happy memories from your time with him. Simply accept, as cetude pointed out above, that none of us does a perfect job of this. I suspect there are many of us who have “lost it” and treated our loved ones instead as invading aliens, which is what many have described feeling. If you made a list of things you treasure about your time together before dementia and a list of things you criticize yourself for, if you are completely honest, the first list will be much longer than the second. I am still practicing this “on balance” perspective as I see my own life being more and more taken over by his dementia. (And I’m not even into the “handfuls of feces” stage yet and my heart aches for you when I think of you watching your love behaving in such ways — it’s terribly difficult and demeaning to both of you.). Anyway, it IS a journey. We learn every day how to be a little more compassionate. There is no “arriving” at perfect caregiver status. The fact that we persevere and endure is often a truer and more important expression of love than all the things we regret.

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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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Dear Emma,
It pains me to hear your story. I’m very sorry you had to endure it. You are a beautiful soul and your love showed no bounds. You gave him the best you could. I’m positive in his heart he knew it even if he couldn’t express it with words or actions.

It’s okay not to be okay. Your feelings are justified. Acknowledge, embrace, and release them. You deserve peace, and it will come soon.

I leave you with 3 things.

Isaiah 60:20 (NIV version)
Your sun will never set again,
Your moon will wane no more;
the Lord will be your everlasting light,
And your days of sorrow will end.

Forget~Me~ Not (Native American Prayer)
I give you this one thought to keep -
I am with you still, I do not sleep.
I am a thousand winds that blow,
I am the diamond glints of snow,
I am the sunlight on ripened grain,
I am the gentle autumn rain.
When you wake in the morning’s rush,
I am the swift, uplifting rush in quite birds circled in flight,
I am the soft stares that shine at night.
Do not think of me as gone~
I am still with you-in each new dawn.

Book: How to Survive the Loss of a Love by Melba Cosgrove, Ph.D, Harold H. Bloomfield, MD, and Peter McWilliams. (AMAZING book and helped me through a lot of my grief).

I shall pray for you. God Bless You, my friend.

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I applaud you for your heartfelt comments. Thank you.

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Just the act of dedicating yourself to taking care of someone so that they could have dignity and care until their death is something you should be proud of. We are only human, and can lose it when we are dealing with difficult and stressful situations. Forgive yourself for being human. Now take time to be good to yourself and rebuild your life. You are still young. Do things that make you feel good and give you a sense of accomplishment. Learn something new; take an online class, or better still, when it's safe to do so, take an in-person class. Volunteer to help out in a cause that you believe in. Work in a garden. Get grief counseling if you think it would help.

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Emmasmudge,
Oh my gosh. Please do not feel guilty at all. You are obviously a very caring person. We all feel guilty at one time or another. I had a similar experience with my 98 year old dear mother. At the beginning of caring for my 98 year old mother, in the middle of the night I got her up to the bedside commode, I was going to change her, but I needed to get supplies in the bathroom and when I came back she had feces all over her hands body and commode. I was upset and told her this will not continue, otherwise she will be going to Shady Rest. I put all her supplies in her bedroom since that day. Guilt you bet and I still feel bad when I think about it to this day, but I try to put things in perspective and I know I give 100% to my mother and do the very best I can for her. You left your job to care for your DH and he was very fortunate to have you as his caregiver. Keep the good memories close to your heart and know you gave him a gift of love by caring for him. Hugs to you.

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You warned your mother that you would "send her to 'The Home' " just like I did with my husband! I'd get soooo exasperated. Some behaviors are well worth getting upset about! After the fact, we can look back at the craziness with better perspective. We shouldn't feel too guilty for losing it when our LO is wallowing in feces and is fighting with us when we try to help. Some of our stories would make a zany sitcom.

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For us all: It is the disease we should be angry with. It is the disease that frustrates us. It is not your loved one - it is the disease! If our loved ones could come back and tell us something, I believe it would be Thank You and I Love You.

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I'm so sorry for your loss, and for the years of suffering that you and your husband have gone through. You have experienced a tremendous trauma, and I believe you are grieving. Grieving is not just about feeling sad, it's so much more complex. There's guilt, there's anger, there's regret. I HIGHLY recommend a book by Tara Brach called Radical Compassion. It teaches you how to take a little time to address the feelings when they come up. You do this through what she calls a RAIN practice: Recognizing what is happening (in your body, not just your mind), Allowing life to be just as it is...lots of opening up and acceptance in this part..., Investigating the inner experience with great kindness, and then finally Nurturing yourself by not identifying with the experience (you are not a mean person, you are a human who has had a traumatic experience, and you are loveable in your struggle with it.) It sounds a little strange, but it works if you adopt this as a practice. You will find what happened in the past belongs, what you are going through now belongs. It's best not to resist it, or push it away, but allow it to just be there. hope this makes some sense to you. The book does a way better job of explaining!

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Know that you are in good company. I have done the same and felt the same. My husband is now in an AL, and I don’t have the stress I did while caring for him. However, the last time I brought him home to visit, I had trouble getting him up from the couch. I need help from him to do it and got stressed that he wasn’t helping. He can’t talk (he has FTD) but his eyes flashed, and I could tell that he was registering my stress and sharpness of tone. I’m still bothered by that, even though I didn’t really DO anything wrong. I just hope in both our cases that the good has outweighed the bad and our husbands always know/knew how deeply we love(d) them.

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How to forgive yourself for losing it with your spouse with dementia?

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