Camilla Flintermann wrote: > > 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!" > * * * * * * * * * * * * * * I would like to add that HOSPICE can be an invaluble aid in helping the family of someone like your father. -Please call them. Jerry Starr RPh