No-one wants to contemplate the possibility that their son or daughter might develop Alzheimer's disease at an early age (or at any age), but for some families of people with Down syndrome that is, or will be a reality. Rick Dean deals with the Stevens family's experience empathically, by looking at the rapid development of AD in the context of their 44 yr old son Jim's life as a whole.
For the Good Times, Topeka Capital Journal, 8th March 2009, by Rick Dean
Click here for other posts related to resources on Down syndrome and dementia, and a seminar with Diana Kerr in Sydney next month (6th April, 2009)
My sister just turned 50. She came to live with me 4 years ago. Incidents of falling and getting lost prompted her decision. She had been living in an apartment and walking to a sheltered workshop to work every day for about 9 years.
ReplyDeleteOnce she decided to live with me, my husband and I built an edition to our house for her. After about 1 year she asked to move to town to be closer to her friends that she socialized with in an adult day club. We respected her right to make such a decision. She was placed in a new group home. My sister was always sociable and physically active. The house mate who was moved in with her couldn't speak or move without assistance; she also vocalized rather than conversed.
My sister then asked to move to another group home with ladies that she worked with at a sheltered workshop. While in the second group home, she went to the ER and then was hospitalized twice. Severe dehydration, hypotension and partial seizures contributed to her hospitalizations.
I then moved her to the nicest nursing home that I've ever seen. It is a very pleasant, positive enviornment, with lots of interaction between staff and residents. I visited her often and despite her progressive symptoms of AD, she continued to want to live there.
The unthinkable happened about one month ago. She was raped in the nursing home. She is now living with me again. Her AD symptoms are progressing rapidly. She started wandering this week. She can't go back to the nursing home until the prepetrator is caught. I want to care for her at least until she doesn't know who I am nor who she is.
I didn't mean to write so much, and there is a question here somewhere. I don't want her to be in pain; I want to keep her safe and help her to have joy each day. I also don't want to prolong her life in any way. I am her legal guardian and have filled out the paperwork for a No Code and a living will. Copies have been given to her doctor, the local hospital, and the group homes. However, I was told that if an ambulance is called for her, the emergency medical technicians would not honor either of those documents. Is this true?