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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Oh, dear lady..... Please don't blame yourself and torture yourself this way.9 You did the best you could in a horrible situation! Please let go of this self blame! You kept him home!

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I simply do not understand that you feel guilty about exploding - I sure would. I know he can't help it but you did not create the problem and you can't fix it. You are a human and have every right to get disgusted. Anyone in their right mind would be angry and frustrated. Second, I have said it before - we are not all suited to be caretakers, especially in very "dirty" circumstances. Why are YOU taking care of him? Why is he not in a facility? You do not deserve this. You are right and normal - no reason for guilt.

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He died.

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Hi, I went thru the same thing as you after my husband passed away last year from dementia. I kept focusing on what I had done wrong instead of accepting that I am not perfect and sometimes the stress could be overwhelming. I finally turned it over to God thru prayer and asked for forgiveness. Then I accepted that forgiveness and finally forgave myself. I know my husband knew I loved him and would not judge me as harshly as I was judging myself. Remember, alot of people would not even try to do what you did by keeping your husband in your home. You sacrificed your own comfort for his.Now that is what I call true love!

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Guilt? How about just regret instead. We all have our moments, even with those who do not have medical issues. You took on a difficult but loving challenge and shouldn't let a couple of frustrating moments outweigh all that you did for your husband for two years. A couple of moments where stress overtook you and you snapped, a tiny bit. What you did was nothing really.

"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 do the same with my Katie (kitty who didn't quite make it to 22, with me over 21.5 years!) I have my favorite picture of her in the special urn I got for her remains and greet her every morning and tell her goodnight every night, sometimes saying other things in between. I bought a locket that has a bit of her ashes in it, so a bit of her is with me all the time and goes everywhere with me! The others who've gone before her all have urns as well, but hers stays here where my PC is. I was somewhat stressed with all the mom stuff and Katie actually went through a few months of kitty sun-downing. There were a few times I snapped at her - no way really to redirect her when she'd get in that "state." I regret those moments as well, but we are only human. There were a few times I slipped up and snapped at my mother too. Only a few. It happens. We need to be kinder to ourselves, understand it was a momentary loss of control, and move on. We can't undo it, but we can put it aside and reflect on all the good memories instead!

"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 guilt."

Agreed, way too young to lose a LO. Please share what you've learned here with them. In helping them get past their regrets, perhaps you can also learn to get past your own. The good times DO outweigh the bad. Focus on those good times. Share with each other some of those good times, especially some of the funny moments! We have enough grief in our lives, we need to be able to smile and laugh sometimes.

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Imho, do not hold on to any guilt, else it eats away at you if you continue to dwell on it. You were a STELLAR caregiver, dear lady. Praise yourself and give yourself a break; you deserve it.

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I'm not traditionally religious; I am spiritual.
Ask God/dess or who-whatever feels spiritual to you for forgiveness.
This is something we all must learn to do, to accept our self as a full human being with a full range of emotions --- and our breaking point(s).

We all lose it at times. All of us (or certainly 99.9% of us). This is human nature, esp when engaged in a very stressful situation as you were. And, while it may not provide you comfort to know that MANY others feel as you do, we do and how many times do I 'wish' I could go back and respond / react differently to situations that I just couldn't handle / manage in my self - with the compassion, equanimity, emotional balance I strive for. We do the best we can.

I'd give you 5 GOLD STARS for all that you did when you could.
TRY THIS:
* Every time you start to think of a time or something and 'blew up' or did not respond as kindly as you would have liked, THINK of two times when you showed LOTS of compassion and care.
- You need to neutralize the 'guilt' with all that you did. And, YOU did a lot.
* You forgive yourself by saying "I forgive myself". On the other side of the page, write how your head responds "Oh no, I can't do that." Keep doing this and you will get out the emotional stuff that is really a form of grief (I believe).
* Write down all the good, all the times you were committed to his care, all the 'I almost lost it" times - you need to turn your thinking around, or your focus of what you tend to think or where you tend to go due to grief and guilt.
* I can't count the number of times I 'wish" I could have reacted differently to my friend of 19 years, who had a breakdown before I met him, who was so incredulously wounded and needy. [In his kindness (he just had a stroke so I feel worse, too) he says "I don't remember." Although he certainly does. He loves me unconditionally. Yes, I cried apologizing to him.
* I, and YOU (and 99.9% of others), did / do the best we can in any given moment. Know this in your bones.
* I had to LEARN to release anger and LEARN how to develop self-and-other compassion. It is a path we are on in life.
* You can do it.
* He knew and I believe KNOWS all the good you did for him.
* If needed, check into getting therapy - perhaps short term. Or a support group.
* What you are feeling / going through is so VERY normal although this may not support you to feel better. You are human.
TIME
* Heals.
* Do your inner work; meditation, find some affirmations and write them out.
* You will heal and work through these feelings. I will remember all the good you did for him - things that I likely couldn't have done - and many others couldn't. You deserve a major Namaste (I bow to the God within you).
* Living the best life you can is how you can show ultimate respect and love for him. He would want you to feel serene, content, at peace within. If hard to let it go (now) for you, do it for him. Gena

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Dear lady. You do not have to forgive your self. God will forgive you. I do not infer that
you will feel immediately a full closure the instant you seek forgiveness, should you do so.
you did a wonderful job of taking care of your husband.
Having been a caregiver for my wife for twelve years after
she became massively handicapped from an extremely viscious stroke, I can tell you that there were many frustrating times when
it would be an understatement to say I was exasperated to the point I felt that I might crack up.
I believe you will receive a large number of messages applauding you for faithfulness.
Grace + Peace,
Old Bob

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Think of a high heel shoe and a nail. The high heel shoe is an inadequate substitute for a hammer when pounding a nail into a wall to hang a picture. Anger is a tool. Its useful purpose is evident when handled correctly. Even when the tool of anger is misused, which happens to everyone, we seek forgiveness, give thanks, and move on. However, if getting angry becomes a pleasant habit grooved into daily living and groomed to be used as a weapon, that is truly the high heel shoe attempt to pound the nail into the wall! No pleasure was sought in erupting toward your beloved husband. Anger was not used as a weapon against him. Rather, those anger moments were an animated expression of frustration and sorrow, packaged in an outburst. The proof of that is that those angry episodes led to grief and remorse. The cure: forgiveness. We all have actual need of forgiveness. Yes, each and everyone of us. Most of us don't even understand how to correctly use the tool of anger. That's proof that not one of us is perfect! We can't walk on water. If we do not forgive our self, we make the unspoken claim that we can walk on water. And, you know what happened when someone walked on water. He got crucified by people who used anger as a weapon. A high heel shoe and a nail in the wrong hands can deliver a cruel blow. It is why I wear flats. Really, I think you do, too. Your love and care for your husband is an inspiration and encouragement to many who read here. God gives beauty for ashes. Anger's outcome of grief brought about sharing your experience that is, without doubt, helping others. It can be seen that you have a handle on anger's correct use. Part of that handle is forgiveness of self. Caregiving is a sacrifice of love. It reveals who we are. It helps to cultivate our soul toward the deeper understanding of unchanging principles governing life. In caregiving's demands can be found the greatest of wrestling matches with our own person. It is a blessing of mysterious proportions.

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Advanced dementia is cruel both to the person afflicted by it and those who care for that person. You were probably burned out. Stop focusing on the few times you lost it and slapped his hand away. Dwelling on the few negative things you did in the past is robbing yourself of moving beyond guilt and grief. Start focusing on all the good things you were able to do for him. When negative thoughts enter your mind, redirect yourself toward what you accomplished. I hope this gets easier with time.

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I am sorry you are going through this grief and loss of your husband. You have done a tremendous act of love by taking care of your husband for so long till the end. Very commendable. And of course, on your own, you would be stressed, overwhelmed, and even angry. It happens to the best of us! Even if you are aware that your guilt is not warranted, it may still stick around for a while. You have experienced secondhand trauma and your guilt allows you to hold onto those bad feelings. Your act of asking these questions now shows that you are ready to make baby steps to healing and are ready to step forward to a life of happiness and peace for yourself. Bravo! This could help: write affirmations on sticky notes and put them places like your bathroom mirror. Or write in a journal. Therapy can help a great deal. Seek and pursue anything that interests you. Pamper yourself. Find moments of contentment and realize when you are experiencing little joys. These will grow over time! Help/love other people or animals and you will get your life back. Good luck. We are rooting for your happiness!

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Your post sounds as if I could have written it. My husband has been gone now for one year and 5 months but still feels like yesterday. His diagnosis of lung cancer was devastating, heartbreaking and horrifying. He was truly my best friend, soulmate, and the absolute love of my life. After the multitude of hospital stays I too always brought him back to our home where he suddenly without warning passed after one of the best days he had in a very long time. We had been married for 25 years but have been together for over 30 years. Cancer took him after his diagnosis in one year and 4 months. It was the hardest time we have ever had. For us, chemo was a horrible experience for him but also me. I was so afraid of loosing him. Fear, frustration, and exhaustion caused me to behave in ways at times that I immediately regretted and always apologized but you can't un ring the bell once it's been rung. I know he forgives me and knows I was doing my best but time, loneliness and reflection can be your worse enemy. I pray a lot and ask God to help me forgive myself. You're not alone. There are many like us. I don't know about you but even with his insurance provided home health care provided nurse, physical, occupational and speech therapist and a private paid 8 hour daily caregiver, it was still extremely overwhelming in caring for my husband. It was just me. We had no children together and his adult parasitic kids from his 1st marriage were no show, no help what so ever. They were more interested in pursuing what they felt should belong to them. That started from the 1st day we told them about the diagnosis and they never let up. Eventually I had to threaten to ban them all from the hospital to keep them from harassing my husband. Talk about a nightmare on top of a already horrific time in his life and mine!
We're only human. We try our best but in the end we're not perfect. What you and I did for our husbands was to try the best we could and that's going to have to be enough. I know my husband loved me and appreciated all the effort I put into caring for him. I'm sure there was still a part of your husband's mind that felt the same about you. Forgive yourself.

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After reading your comment, it occurred to me to ask: is you had it to do all over again, would your husband have received chemotherapy? That is--did it prove beneficial, or did it just simply make him feel worse?

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You are human. Your spouse could not understand or cooperate with your efforts during those moments. I remember times like these with my children - moments of their willful actions defying my directions. Do I regret those moments? Not really because I understood that I was actually helping them to either stay healthy, stay safe, or learn how to operate in the adult world. Similarly, when my gram or mom would not comply with a request that benefited their health, their safety, or making the environment pleasant for all - there would be clashes of personalities. I would have to default to whatever kept them safe or healthy and sometimes that meant upsetting them that they couldn't have their way at the moment. As long as there wasn't abusive behavior, firm handling of a situation should not be viewed with regret.

Since you are having distressing memories, you may benefit from joining a grief group. Most of these groups' members are people who have lost a loved one. Sometimes a professional counsellor leads the group. I have heard wonderful things about GriefShare.

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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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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.

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Your husband had bad dementia with a horrific behavior. Who would not "explode" if they are human sooner or later? Perhaps there are a very few people who can deal with this but I believe the majority could not handle it and would eventually let loose. You are human, you did all you could to help him - you had every right to blow. I know I would. Why were YOU taking care of him with this advanced state? Anyway, do NOT feel guilty - you did nothing wrong in my book.

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I want to add a comment. I know it is said there is a reason for everything and that is probably true. However, I don't care why this or that happens - whether it just happens or is someone's fault. Some things are so ugly and so disgusting and repulsive, they simply cannot be tolerated and must not be allowed.

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

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