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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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Riley2166 Mar 2021
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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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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RedVanAnnie Mar 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.
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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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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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jacobsonbob Mar 2021
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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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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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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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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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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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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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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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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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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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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NinjaWarrior3 Apr 2021
He died.
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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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