ColleenRe

I'm so very sorry for your loss. Your mom loved you and she thought you were a wonderful person. I can tell from reading your post. Your mother thought the world of you. She knew you came to see her whenever you possibly could. It's so painful watching a parent go from lively and active to ill and bedridden. And it's so difficult to have a parent you regarded as your best friend just taken away from you. Again, I'm so sorry for this loss. When my dad died in early January it hit me like a ton of bricks. All of the feelings you are having are normal. Please be kind to yourself and recognize yourself for what you are--a very loving and giving person.

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.

I miss my Dad so much. I can't believe he's gone. Tears are streaming down my face as I write this. I can't concentrate. It's just so painful. A few days before he died, I visited him in the nursing home and he was having a fairly good day. I read him "The Night Before Christmas" and he said "That's a nice story." Before I left, I said "I love you, Dad." He said "I love you too." It hurt me so bad to see him decline over the past year. He went from being able to walk a little, with assistance, about last year at this time, to being unable to even feed himself. Although he was 95, he had been healthy enough to live on his own until he was 94. I thought he would live to see 100. In the early part of December, he almost seemed a little better, a little more alert. Then he really took a turn for the worse and died the day after New Years, 2011. I wish he was still here. The time I spent with him this past year was so precious. I really miss him.

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.