Looking Back

[ColleenRe]

My dad died Jan. 2, 2011 and for me the hardest part by far is guilt. I wish I had tried harder, found better doctors, done more to help him. I had serious reservations about his doctor's skill, yet I did nothing, and I feel such regret and remorse now. Dad's doctor said in September to contact Hospice because Dad would probably not live until the end of the year. I did that. I did not get a second opinion or take him to a hospital for an evaluation. What if better doctors could have helped him? Dad's doctor put down Parkinson's Disease as the cause of death, and indeed his symptoms were really very much those of end stage Parkinson's. But what if it was something else instead? Something that could be treated? I would never wish this kind of guilt on anybody. I can't change the past. I don't know what to do. Just being told not to dwell on it doesn't help. Dad wanted very much to live.

[sunstreet]

Dear ColleenRe,

I am so very sorry for your loss. I hear your guilt. I believe this to be a normal reaction but it does not mean that you are guilty. Feelings are not always rational. I too went through this period of guilt after my Father passed away from Alzheimer's. All the same what if's I was plagued with too right after my Father died. I know that no words no will suffice. I just want to know how sorry I am and I don't believe you are guilty of anything except loving your Father.

For me in time, I was able to let go of all the what if's and I pray that it will be so for you too. I am sorry for the reason you are here but I want to say welcome.

Blessings and Courage, Carol Ann

[STARKISS]

Hi ColleenRe,

I just wanted to say that I am sorry for your loss and that feeling guilty is normal as this point of your grief journey,,, I too had alot of guilt when I lost my mom... i felt guilty because I let her have some treats that she should not always have and I felt guilt that I worked more and spent less time with her... I lost her April 2005, and shortly after that my dad got ill and died he passed away July 2005.. I felt so guilty not spending time with him and taking his sickness as serious... Shelley

[BellaRosa]

ColleenRE, I think guilt is a normal part of this whole process. I feel guilty because we never took my mom for a second opinion about her cancer or her treatment options. What if there was a doctor out there who knew of a better way? I also feel guilty for not thinking of hospice sooner. Clearly, she wasn't doing well and couldn't continue treatment, so why didn't we ask about hospice before it was too late? Maybe she could have spent her last weeks more comfortable than she did.

Unfortunately we'll never get answers to any of these questions, and asking them will just continue to eat away at us. I ask them less lately, but they still pop into my head. I try not to dwell on them too much or else I will drive myself crazy.

[niamh]

CollenRe,

I'm so sorry for the loss of your Dad. I agree with everyone, guilt is just another ugly part of the process. I too feel guilty and have so many questions. I lost my Dad suddenly, I took him to hospital with a kidney stone and he spent 3 nights on the corridor of the ER stuck on a trolley. He was a heart patient and they never once monitored his heart properly, cardiac arrest is what happened so I wonder so often what if they had checked his heart properly, they would have seen the blockages, he was already at the time frame for probably needing a second surgery anyways. I get so mad with myself for not pushing more, I heard the nurses asking him if he had chest pain, that is no proper way to check someone's heart, especially if they are doubled over with kidney stone pain.

I don't have the answers and never will in this life like Bellarossa says. Somedays the questions are more prevalent than others, I guess I go through phases with it all.

I know the one thing that keeps the guilt from truly destroying me is knowing my Dads attitude was always "you never know the hour nor the day and your time is up when it's up". Of course that belief is shook in me now too because I do think well if he had been checked properly maybe he'd still be here but another part of me thinks nope, this was it, this was his time & nothing I could have done could change that.......thinking that does NOT make me feel any better, this was WAY too soon to be his time, he shouldn't have been taken so soon, so so early in my life.

The questions and guilt are hard, we want answers, we need answers but as I said somedays I focus on it more than others. For me I just try to live with it, I can't imagine the day ever coming where I won't feel some pang of guilt, can't imagine never having the questions, these questions will always be with me but maybe not always at the forefront of mind all the time.

And of course you are not guilty of anything but hearing that probably does not help, you feel it right now and that's what matters. Just know that it's ok, we all get it to some degree so I hope you can find some tiny comfort somehow by sharing with us here,

sending you a (((hug))) and much peace and comfort,

Niamh

[ColleenRe]

The guilt feelings lifted one day when I began to remember Dad the way he was before he got sick. Dad had so many wonderful years, and he lived life to its fullest up to the bitter end. When I focused on memories of Dad as he used to be, I felt better. The guilt did come crashing back down on me again, and it's still here now, but I'm glad it lifted for a while. What did I do "wrong" in the first place? Calling in Hospice before I knew, beyond a doubt, that Dad could not be helped by further treatment. Dad's doctor wanted me to call Hospice, and I did so somewhat reluctantly. My daughter says I have nothing to feel guilty about because Dad was sick, was not going to get better, would only have suffered longer, and things could have gotten worse if I had sought further treatment. She's convinced we did the right thing, that Dad did indeed have Parkinson's and it was incurable and progressive. I hope in time that I can make peace with my decisions, I don't feel any peace yet. I'm just glad the guilt can at times lift a bit. Does anybody know of any books or other sources for dealing with the guilt over "end of life" decisions? So many of us are faced with this, I can't be the only one struggling with remorse. Anything specific to Parkinson's disease deaths? It would be nice to be in contact with someone whose parent died from Parkinson's because it is quite different from terminal cancer or other diseases. You don't actually die from Parkinson's, you die from infections your body can't fight anymore, or starvation because you can't swallow. I think dad's doctor at the end just decided to stop treating his infections and let Dad go. Maybe if the infections had been treated, Dad would have starved because swallowing had become more difficult for him. It's just so hard because I don't know the answers. Anyway, whoever reads this, thanks for listening. And I would really like to know where to go to find others who have experienced a Parkinson's related death.

[grace10]

I am sorry for all of you going through feelings of guilt. Yes, I think it is a normal part of the grieving process.

Sometimes I go back and forth wondering why my mother's Coumadin level was so high and whether something else should have been done to bring it done. What was going on that it could not be brought down quickly? I know she was in the best of places, and had a great doctor. I sometimes wonder what else or who else could have made this better. And, yes, it would have been better if I were there the time she left this planet.

But, that's not what happened. Even her friend who lived a few miles away could not get there in time. Even the nurse closest to her, and the other nurse I talked with in the middle of the night, had absolutely no idea that she was going to pass on in a matter of hours. And, yes, maybe different treatment for Coumadin could have extended her life a little while longer. But, what would that have been? But, I also know that she was in a lot of pain that no pain killer could really take away without awful side effects and that she was tired, tired, tired. She always "its old age, cannot do anything about that." Maybe a big part of that is true.

So, if I start feeling guilty, I think about this:

1. The people who cared for her did the best they could.

2. The largest new population in our country is the old, old. And, despite all medical advances, even a decade ago, not many doctors were trying to treat people in their late 90's. There is just so much more that need to be learned about the old, old.

3. There's a big part of me that says that when it is your time, it is your time. Maybe this was decided before we even arrived here, maybe it is a willfulness of someone that they really want to leave and it is time. Look at all the time one part of a couple passes on and then, within days or months, the other half leaves this planet. I really do not have any control over another's journey.

4. I did the best I could. Even though I lived far away, I visited regularly, sent her things, called, bugged the staff at the nursing home to make things better for her.

5. My mother is on the other side, but really close to me anyway. She has let me know she is fine. Although I miss her presence here, she is probably having a great time on the other side and we will be together again.

6. A few days before my mother left this planet, knowing she was just miserable, and being so anxious about all the suffering she was going through, I did a prayer request and asked others to pray for her well being, that she be free to leave if that is best for her,that it is OK to leave me, that she get the help she needs to live peacefully here and be free of pain. She passed on two days later. I know this was her deepest soul choice and it was just too much for her body to continue on.

6. I think somewhere down the line, we do make peace with all of this.