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Blaming Myself


bosspark

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My husband just died in July after a struggle with Parkinson's Disease. Although he had had PD for a while, his death seemed quick to me -- he lay down for a nap on Wednesday then didn't wake up and died Friday, after being in hospice care for just 24 hours. It was a peaceful passing, but what I am doing which is not very helpful is going over and over the last days and finding fault in my care for him. I feel like I let him down in the last hours of his life because I didn't (couldn't) wake him up. Should I have taken him to the ER? I just keep hashing this over and over even though people tell me I did a good job. I am trying to keep busy but my down time is spent missing him and blaming myself for his death. I don't see how people get over these things. I'm pretty much a mess.

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Dear bosspark, I am so sorry to learn of your husband's recent death. These early days and weeks are ones of shock and fog especially when things happened so quickly. I can tell you from my own experience having lost my husband after a long illness that guilt is a universal with grief. I think very few people get by without feeling they failed someone. We try to do so much and do it perfectly and perfect is impossible. You did your very best. I did my best and feeling we fell short of the mark is because we wanted to be perfect caregivers. Try not to keep repeating the messages and instead, perhaps repeat that you did your best and no one can do more than their best. Perhaps write him a letter and explain your feelings to him. I do that a lot about many things.

I hope you will continue to come to our loving and compassionate circle...we will all walk this path with you...we all know it very well and are at various points on the road.

I was a mess for a long long time...I think most here were also. It changes and you will slowly see that though we don't get over our losses, we learn how to carry them and integrate them into our lives. We are here for you.

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Dear Bosspark

I can only echo what Mary said. My Pete had a stroke in November 2011. Up to then he had been in fantastic health. It was a devastating stroke and he had to stay in hospital 30 miles away. I drove there every day and then in March I persuaded them I could care for him at home. He came home and I had carers several times a day. Then, because our daughter, a single mother, needed me for the birth of her second daughter, he had to go into a nursing home for a fortnight. He died there before he could come home again to me. We had been married almost fifty years. We were complete soul mates. I feel guilt easily even though I knew I did everything I could. I could not have done more but I still feel guilt. When I do I try to imagine what my Pete would say to me. He loved me so deeply I know that if there is anything to forgive I am forgiven in a heart beat. Please join us. Please tell us more about yourself, your husband, your life. We love to hear these things even though we are sad that you are here. Jan in England

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bosspark,

Like Mary said, it's common to feel guilt when your loved one dies. Hindsight is always easier, and after my husband passed (sudden heart attack), I kicked myself for not pushing him into switching doctors because he didn't feel heard with his. At the time I thought "he's a grown man, he can make his decisions without my help." but now I wonder "what if". Like Mary said, when that thought presents itself, just respond to it by saying you did the best you could with the knowledge you had at that time, and that's all anyone can do.

I'm very sorry for your loss. Are you seeing a grief counselor? If not, that could be of help to you, it's hard finding your way through this maze of grief without help.

I see you have another post, will have to look for it...if you haven't already done so, you could post in Loss of Spouse where you'd get more responses.

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Thank you for your kind responses. I can't tell you what it means to me to be with people who have walked and are walking where I walk nowI have contacted the bereavement counselor at the hospice that cared for my husband. I have been putting too much of my grief on the shoulders of my 26 year old daughter, who should not have to bear so much, although she is willing. Wayne and I were married for 32 years, and he was the love of my life. Until Parkinsons and Lewey Body Dementia stole from us, he was the funniest, most charming man alive. He still remained himself most days, and told me that we could handle anything as long as we were together. I'm trying so hard to feel that we are together still in a different way. That would be a comfort to me. I am a teacher and I had caregivers with him during the school year, but I was able to be home with him this summer. Every day I would get him up and dressed and we would sit outside in the backyard for breakfast. I am so glad I had that opportunity. Thank you all so much for caring. I think this forum will be a great help to me. God bless you all.

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Bosspark,

I also am dealing with a great deal of guilt and it is very hard. My husband Steve had kidney disease and was on dialysis. I did the dialysis treatments at home for him. He developed a blood infection most likely from the catheter, and I blame myself - that I wasn't careful enough about hygiene in doing the treatments. The infection went to an artificial valve in his heart and more complications ensued. He was in the hospital for four weeks total, the last ten days in the palliative unit. He was on a ventilator for nearly three weeks because they had difficulty getting him off of it, so he was very uncomfortable and unable to communicate. Finally he was able to indicate that he wanted the feeding tube removed and no more dialysis. He then lived another ten days in terrible pain. I blame myself for not being careful enough with the treatments and causing all his horrible suffering. There's no way to know for sure that it was something I did or did not do, and it doesn't matter now, but I can't forgive myself. So I certainly know what feeling guilty can do to a person.

Rita

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Rita, my dear, it hurts my heart to read your statement, "I can't forgive myself," as your use of the word "can't" (as opposed to "won't") implies a deliberate decision on your part NOT to forgive yourself.

Guilt is such a heavy burden to carry on top of the sorrow you're feeling already. I certainly won't try to talk you out of that guilt ~ after all, in the end, the only person who can forgive you for whatever you think you did or failed to do is you ~ but I do want to point you to a couple of articles that I hope will help in some way.

It's always been my experience that only the good people feel guilty, and the fact that you are blaming yourself for not being careful enough to prevent an infection while you cared for your husband tells me that you are, in fact, a good person who would have done anything ~ anything in your power ~ to save him.

I invite you to read this post, including some of the articles listed at its base, and I hope you will take their content to heart:

Grief and The Burden of Guilt

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Rita, if anyone expected herself to be a perfect caregiver, one who did everything perfectly including the prevention of anything that could go wrong as Bill and I dealt with his Alzheimer's for 5 years, it was me. Yes, I came out of the chapter bearing guilt also because I looked back and instead of seeing how challenging the situation was, how much I provided out of deep love and how much I prevented, I could see only the so called times I failed to be a perfect caregiver. I blamed myself for so many of the things that did go wrong including ones there is no way I could have prevented because in caregiving things happen, things go wrong, things do not go the way we hope. It is just the human condition. Like you, I carried the huge burden: guilt...I know I carried it for a long time and to carry that as we deal with gut wrenching pain and longing to be with our loved one and remember good times is so very difficult.

Like Marty said, no one can forgive what you think you did wrong. Only you can come to the place where you see you were a loving, caring caregiver doing the best you could do. I hope you can get to that place soon where you realize the goodness and the love and care and let go of the "stuff" that happens because nothing is perfect when it comes to disease and illness.

I probably said to myself a thousand times and more, "Mary, you did your best. You were exhausted and it was a stressful situation and you did your best." By focusing on that kind of thinking, I finally got to a place where I let go of (i.e. forgave) whatever I MIGHT have done that was less than perfect. I pray you get there also so that you can remember those days with warmth and love and the joy of the love you shared with him instead of berating yourself and punishing yourself with guilt. I agree with Marty, good people are the ones who feel guilt but guilt is not always deserved. Love yourself these days.

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Perfect, Marty. I see synchronicity on a daily basis. Love it.

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bosspark,

My mom had Lewy Bodies too, it includes Parkinson-like symptoms. My mom just died a week ago. I haven't had time to feel guilty yet but I'm sure it'll come. We had her in a dementia care facility, she wouldn't cooperate with any of us kids, we had to take her to court to ensure her safety...that process took a year. During that time, it was terrifying. She was not mentally fit to be living alone. It was a few more months until there was an opening. Assisted living facilities couldn't take her, she was court ordered to 24/7 lockdown. I thought it would be really rough, the adjustment, on her...she'd lived in her place, a place her and daddy had built, for 58 years. But oddly enough, it didn't take long and she enjoyed visiting with others there. It didn't seem to matter if they could respond or not. After 1 1/3 years there, she had to have her walker taken away because of her falling. That's when she had the rough time. It was hard watching. I wanted to bring her home with me but I knew it wasn't feasible, I had no support system to help me with her and she needed constant watching and care. I knew she was where she could be best cared for. I visited whenever I could, it was two hours away so I couldn't go everyday, I wish I could have. It's a hard disease.

You had a lifetime of memories together. This disease can only rob them temporarily, he's healed now and when you see him again, he'll remember all that you shared and experienced together. You have nothing to feel guilty about, you did all you knew to do for him, and beyond that, it was out of your hands. But I know it's easier to say and harder to feel it inside. I wish I could give you a big hug. At least you can come to this place and share your feelings. This is the best place in the world to me. Maybe not tangible, virtual, but all of the people here are real so to me it is real. We are from all over the world but connected in the most special way, sharing of the heart.

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Rita,

I am so sorry for all that you and your husband went through. Even if he was in the best hospital in the world, it still could have happened...it's very common. I think all of us live with the "what ifs". One thing that has helped me...(my husband died of a heart attack, we hadn't known he had heart trouble. I often wished I'd pushed him to see a different doctor but at the time I'd left it up to him, thinking he was a grown man, he could decide for himself who to go to) My husband and I meant the world to each other. We had implicit faith in each other. We always believed the best of each other and if something didn't look/sound right, we'd have faith until we could get together and talk it out. My husband said he always knew I meant the best for him. And this time of death was no different. I know that he knows I loved him more than my own breath itself! I know he knows I always meant well for him. To him, I know, there'd be nothing to forgive. He had nothing but the deepest appreciation for me. And I'm sure your husband and you felt the same way about each other. We have to have faith in each other until such a time as we can talk it out. And you know what? One hug in heaven will say it all.

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I've been examining my guilt about my husband's death, he was diagnosed with cancer 5 weeks before he died last year. He had symptoms for a few months that were either undiagnosed or misdiagnosed. I missed medical signs for several months that I "could have/should have" put together into a cogent set of symptoms to bring to our doctor. I'm a medical professional. I do this for others all the time yet I missed it in my husband.

I read the "Releasing Guilt" article in the Daily Om (thanks Marty), yet "feeling at peace with past actions" just doesn't fit where my heart is. Fred was getting ill, we didn't acknowledge how serious it was, by the time we figured it out, we had only 5 weeks together. We put all our energy into making his death a good death, no regrets there.

I hadn't even thought about feeling guilty until I read this thread, but yes, I feel guilty that I missed or downplayed the signs when we maybe could have caught the cancer sooner and had more quality time.

Jo

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Jo, I totally understand. My husband had been complaining of symptoms for months and I missed it, but then I feel that's why we have doctors and the doctor didn't give it regard and missed it too. Poor George! I wish I'd pushed more for him to switch doctors or see a Cardiologist, but what's done is done, nothing I can do about it now. The truth is, hindsight is always clearer and we aren't perfect, we don't always see everything like we wish we could. Even being a health professional, you don't look at your husband as a patient, you look at him as your husband, it's not surprising that you missed something. Perhaps they'd want us to see them as a man, not as a patient. I hope that all of us can release the guilt feelings and realize truly that we all just loved them more than life itself and forgive ourselves our imperfections even as they would.

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Oh, the dreadful coulda, shoulda, woulda syndrome. God has a plan and none of us can change it but boy do we all go through this syndrome after it's over. I think those of us in the medical field especially are hard on ourselves because we think we should have had a crystal ball and been able to see what was going on. 7 years ago on 8/14 Tom had a colonoscopy and a few days before that had the first physical he had had in years. Everything came out fine. Then on 9/5 we got the news that would change our lives forever that he had pancreatic cancer. Yes, he had some soreness in his right side that week but we had been painting and moving my mom to a new house and we hadn't done that for years and we were now in our 60's so didn't think too much about it.

I guess what I'm saying is try not to beat yourself up and the loneliness is almost all consuming right now. Not going to lie to you because not all things necessarily get easier and each of us walks this path our own way. We are all always here for you. It is "sad" how close you can become to the people on here. KayC and I have been friends for almost 7 years now and we lost one of those friends at the beginning of the year. Maybe you have never "met" any of us but we will try to help you the best we can.

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Thanks for the thoughts....it's so interesting...where do we draw the line between feeling a feeling (such as guilt), just being with it, acknowledging it versus intellectualizing it as a "could have/should have" emotion? Telling myself I don't need to feel what I feel seems counterproductive in getting through it.

I'm not stuck in a pity party of grief; I'm moving forward in many healthy ways as my first year of loss transitions to its second year this week. Yet it feels right to BE with my guilt, regret, loss for moments each day.

Jo

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I wouldn't accept the guilt but by the same token, you're right, you can't talk yourself out of it either. Maybe just counter by reminding yourself of all of the good things you did, the things you did right, and the fact that he knew how much you loved and cared for him. Ask yourself what HE would tell you if he could.

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Jo, my dear, It's not so much telling yourself you don't need to feel guilty as it is asking whether the guilt you feel is rational (as in, justified) or irrational (as in, not based on the facts). I think we tend to hold onto irrational guilt until we feel as if we've punished ourselves enough ~ and you may not be at that point yet. As you say, you need to sit with this guilt for a while yet. That's okay, because as you sit with it, you will be examining to what extent it's justified and whether you deserve the punishment you've condemned yourself to. But if, after a reasonable length of time, you find yourself unable or unwilling to forgive yourself, you might consider participating in an in-person grief support group. When it comes to guilt, the feedback you receive in a grief support group can be invaluable. I've seen it work as a sort of group absolution, and it can be quite powerful.

You said, "I feel guilty that I missed or downplayed the signs when we maybe could have caught the cancer sooner and had more quality time." But whatever you did or failed to do was not intentional or deliberate on your part. You did not set out to bring any harm to your beloved ~ in fact, I'm sure you would have done anything in the world to prevent any harm from coming to him. You are not a physician, and you both missed or dismissed whatever symptoms presented themselves. For many of us (and it seems, especially for men when it comes to health), it is in our nature to downplay those things we don't want to see or cannot bear to acknowledge.

You might try placing yourself in front of an imaginary judge and jury. When presented with the facts in this case, would they find you guilty as charged?

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Maybe guilt is too strong a word, perhaps regret is a better choice. I don't feel that I've condemned myself to punishment nor have anything for which to forgive myself. We did the best we could with the short time we had, and for that I'm grateful.

Here's the "but".... the fact is that medical signs and symptoms were missed. Had they not been missed, we'd've had more than 5 weeks quality time together after his cancer diagnosis. Call it what you will: guilt, regret, loss, unease......to me, they're pretty much the same.

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Jo, I am sure, as you said, that guilt, regret, loss and unease are all pretty much the same to you. They all are difficult. When I struggled with guilt, I felt a bit of triumph when I moved from guilt to regret since I did not feel as if I failed with regret. instead I felt something happened or did not happen that I wished was different and I was not a failure to Bill. I am glad you do not feel condemned to punishment or need to forgive yourself...you, who did so much for your beloved and who love/d so deeply.

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What a wonderful community this is! It is such a blessing to have a place to share thoughts and feelings people in my daily "real" life don't want to hear and don't know how to respond to

. KayC wrote about her husband " I know he knows I always meant well for him. To him, I know, there'd be nothing to forgive." What a truly helpful thought. I think this holds true for you, Rita, and for others of us who carry a guilt our loved ones wouldn't think of asking us to carry. That's not what love does. And how lucky we are to have had such love!

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Yes we are lucky, it is what carries me, even now.

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