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Reply to message from [log in to unmask] of Mon, 14 Apr Suzanne , Hi My name is nancy and I am only 38 yrs. old. I have MSA. Although I am not the cg I went through this with my parents dying. --3 mths. apart. Yes it is VERY hard to watch them dying. I live in another state and I flew back and forth while this was happening. I just got my first real job when my parents were dying. It is ok to cry sometimes. I can only speak for myself, but I am sure someone will assume that I am speaking for everyone. I am not --only me. You are getting married . How beautiful! You have to decide how to handle that situation. No one else. No matter what your decision is someone will find fault and someone will agree with you. That is life. I hope you get through this decision process peacefully and accept your decision. I admire your mom for being with her husband at this juncture of his life. I am not saying whether of not I agree with her choice. That does not matter. What matters is she feels comfortable with her decision. A living will is a good thing to have though and it is something many people do not like to face. I know this may sound strange ,but I hope you have a nice day or maybe I should say a peaceful pleasant day. I understand that it may seem hard to do, but i hope you do. Nancy M. >On Sun, 13 Apr 1997 22:23:44 -0400 Suzanne Silva said: >>HI: >> >>My name is Suzanne, I am 28 and the youngest daughter of Adam, age 66, who >>has Parkinson's and Alzheimer's, both in the advanced stages. I was >>subscribed to this list server several months ago but had to unsubscribe due >>to some personal stuff. >> >>Let me tell you a little about why I have rejoined. I found so much >>understanding and compassion here that I had to find my way back. My father >>is dying. He hasn't eaten more than 3 bites of food in almost 4 weeks. He >>can barely talk, and when he does it's a whisper. He is merely but a shell >>of the vibrant man he once was. He does not walk and hasn't for longer than >>I can remember. He is totally bedridden and dependent on my mother for every >>little thing. Even though he should be in a long-term care facility, he is >>at home. My mother, age 61 with high blood pressure, works herself ragged. >>But it is truly a labor of love. I shudder to think how hard my father's >>illness has been on her. I am losing a giant of a man, my lifetime hero, but >>she is losing her husband, her lifetime love. >> > >Suzanne, I'm glad you joined CARE... I can relate to your family's situation >from my own--my husband does not have AD, but has the form of PD which >causes gradual dementia/Bradyphrenia, and this is the hardest thing for >him, I believe--not easy for me, either. His biggest concern is that he >doesn't want to "be a burden" for me...we've been married nearly 54 years, >and the losses are impossible to comprehend. He often talks of moving to >a NH because of his concern for my health---this makes me wonder if your >father may have some of the same feelings , as he sees your mother suffer >from HIS illness? Many PWPs I believe feel a horror at the idea of a >lingering "vegetative" state, and indeed your father may refuse food for this >reason--society makes it easy to help a suffering pet, but not a loved one >who may have reached "the end of her/his rope". I know this is controversial, >and there is a lot of resistence to discussing such things on the main list, >where a healthy denial may be the way many PWPs cope. It is not a new >topic here on CARE, however.I hope that your father has made his wishes clear >to the family, has a Living Will and Durable Power of Attorney for Health Care >(which appoints a proxy to "speak" for him if he can't speak for himself) >Please feel free to discuss all of this here, knowing folks will be able >to understand and empathize. > >> >>It's hard to watch him fade, very hard. I haven't even been able to cry >>about until today when I saw the funeral home information sitting on my >>mother's kitchen table, like a catalog or something. They say that he may >>last another month. Maybe not even that long. I think he's willing himself >>to die. He won't eat. He won't allow us to get him a G-tube. The quality of >>his life is non- existent. He is ready to leave this place. >> >DO CRY--it helps! > >>I am getting married in 3 weeks and I have instructed my family to call me >>home if something happens to my dad while I am away. I feel incredibly >>guilty even going in the first place. I should also mention that I am >>bipolar and this has taken a real toll on me, and I am fighting the >>depression that is just around the corner. >> >Surely your approaching marriage would make your father happy--try to >see it that way, without guilt. > >Camilla Flintermann, CG for Peter, 78/7, Oxford,Ohio >[log in to unmask] >* * * * * * * * * * * * * * >"Ask me about the CARE list for PD caregivers!" >* * * * * * * * * * * * * * > > --