CAREGIVERS IDEAS/TIPS RESPONSES

From Sandi in FL
 
My mother has Alzheimer’s and Parkinson's and, because of those issues, resides in a wheelchair.  I am her sole caregiver. She came to the Keys so I could oversee her care while she lived in a nursing home about a mile from my home. It has been quite the experience, with a lot of twists and turns. The first nursing home closed down and evicted everyone "just like that." Over 100 residents were split up, all were scattered to different places, some died as a result, and a few quickly got to travel together to yet another nursing home on short notice. My mother was one of those people. She had to move north to Homestead, over 100 miles round trip for me, while I worked 90 miles round trip in the other direction. It took me almost two years to "get her back" to the local facility by my home.
 
I learn something from my mother every day, even though she is now 87 and I am 62, just retired from teaching second grade. (She is a saint, a pleasant saint.) When I am not with her, I am forever dealing with paperwork issues, medical reports, meetings about her, billings, Social Security, Medicare, Medicaid, a vast array of roommate issues over the years, nurses, caregivers who, though nice, don't speak her language or mine. At this point, my mother hardly speaks at all and eye contact is something we have to work at as Parkinson's takes away your ability to show expression. She also has a tremor. It's hard to watch your own mother progress into more helplessness.
 
My only sibling, her son, and his entire family, stepped out of the picture four years ago when I moved her from Chicago to the Florida Keys. They wanted her to move because she got lost driving twice and the police took her license away. My brother saw the writing on the wall and he and his wife wanted no part of further care. She lived in the home she helped them buy to raise their children, but they wanted her "out," so I took her. I thought they would be happy. They were SO happy, they stopped all communication as if she does not exist, except maybe a Christmas card from her son, but nothing from the grandchildren she helped raise. I never hear from them either. It has been a difficult experience for my mother. That's what Alzheimer's is like in this particular case. Everyone wants to forget, not just the person with the actual disease.
 
It leaves me to wonder, if she did not have me, an educated daughter who has the patience to fill out endless forms, who would be watching over her interests? How does that work?
 
I am sure there are even more difficult stories of those with parents living in their home. It is a fallacy to think that you "drop your parent off" at a nursing home and just stop by once in a while with a piece of coffee cake and copy of Ladies Home Journal and then leave.
 
It's not like that at all.