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Spousal caregivers ...

George of Carpinteria, CA writes:
I was the primary caregiver of my paraplegic wife, who had MS, for six years. I had help from a home health aide, but no other assistance. On the contrary, I had resistance from a sister-in-law who could not face up to the realities of her sister's and my situations.

It is essential to communicate the realities of illness and caregiving to all potentially helpful relatives in the most immediate and graphic ways and to ask -- no, demand -- their support and assistance. It may be necessary to play on their pride or their guilt or their fear of the disapproval of others, but they must not be permitted to avoid some immediate hands-on responsibility.

Roberta of Hollywood, FL:
My mom has Alsheimer's and Parkinson's - she's 75. She's been in a nursing home for almost 4 years. Here's the amazing part: My dad is 83 and everyday that my mom has been in the home my dad has been there 3 times a day to feed her breakfast, lunch and dinner. He also massages her, brushes her hair, sings to her, talks to her, takes her for walks, picks her up and puts her to bed after lunch, the list goes on.

Not only does he help my mom he helps the residents. He was an entertainer all his working life so he sings to them and tells them jokes. He talks to them, wheels them around puts on their bibs at lunch time and calls them all by name. At lunch when a resident needs something they don't call an aide or server they call "Jack!".

When people give my dad advice and tell him to take a break he can't keep up at this pace, he just smiles and accepts their concerns. He won't take a break - ever! He schedules his doctors appts. or anything else around my mother. If there were more people like my dad, there would be less lonely people in nursing homes!

Barbara of Woodbourne, NY:
I am a 66-year-old retired registered nurse and I presently care for my husband who has Parkinson's disease (diagnosed 12 years ago) and dementia. He is 75 and though he is still ambulatory, he needs assistance with most daily tasks. Being a nurse does make the job somewhat easier for me as opposed to someone with little or no medical background but it sure is different caring for a loved one.

We were fortunate as we were able to travel and do the things we enjoyed until about two years ago but now I often feel depressed, isolated, stressed out and sleep deprived. He does go to a very good daycare program three days a week and that has made a tremendous difference in the quality of his life and mine as well. I'm able to do some of the things that I enjoy and it makes caring for him a bit easier. But it's never really "easy". I think the worst part of the situation is the fact that he is no longer the person I used to know. He is often confused, he hallucinates and doesn't laugh or enjoy much anymore.

Patricia:
My husband of three and a half years has Alzheimer's. He is 74 and I am 65. My physical health is not that great but his is wonderful. We help each other. I need some bladder surgery so I cannot lift. He can and does. He says, "If it's on my plate, I can handle it. During his life he was a fighter pilot and test pilot and served in 3 wars. One of the great warriors that has helped this nation become what it is. I get discouraged and tired but we love each other and keep an optimistic attitude.

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