Last September I headed South to the funeral of my Aunt.
My Dad and I picked up my Uncle and it didn't take long to figure out there was something "off".
He said a few things that made no sense, argued with me over a petty thing. And I decided, as my mother's daughter, that I could help, I could fix this. I never had to deal with anyone with dementia. I really could not help or fix it at all.
I headed to the doctor with him. He was asked to draw a clock with a certain time. The clock was off and he was aware that it was off but could not fix it. He was upset that the doctor diagnosed him when hours earlier he knew "something" was wrong. He was angry that he was told not to drive. He had drove a semi for years. The doctor was now a quack and the story of the visit was twisted many times over.
My younger brother and I decided he needed help with money, bills were not being paid and money was going in and out of the account, sometimes on the same day. He gave me power of attorney and then took me off. Put me back on the account and I had to start transferring money when large amounts were withdrawn and never re- deposited.
I set up Meals on Wheels and his neighbors called me to tell me the latest mis-adventure. I took him groceries. I lied and told him his stove was broke when I walked in and smelled gas. (He insisted he must have bumped the knob, he would not forget he turned it on.) We un-hooked the gas and brought him a hot plate.
He signed the title of his car and trailer over to a cousin who did not understand or care that my uncle was headed for Medicaid and you can't sign over anything for years before or you will be penalized. He needed to be in a nursing home but the nursing home would not take him, even with an emergency entrance because of the Medicaid waiver and the title mess.
I went to the courts to be Guardian because I could not get help. The small town he was in sent a Real Service rep and she asked him about showering and cooking. He told her he was fine. She said he didn't qualify for any services. Adult Protective Services was no help.
The local Social Security/Medicaid office told me to get him into my county. We found him an apartment for lower income older adults. He could not figure out the elevator, he thought he was in jail. He would not/could not cook for himself. I was fighting a losing battle.
Trips to hospitals/doctors and no one could get him placed. Lawyers to get the titles back.
A lawyer had told me to rescind guardianship a few months earlier because I would not be able to get anything done. I would be chasing my tail. I had been doing just that for months. I talked to his daughter and she said she would take the guardianship over.
A few days before the court date he seemed to have a complete meltdown. His daughter said we needed to take him to a Fort Wayne hospital that had a geriatric ward. I got him in the car and we met and drove him to the hospital. We just kept lying to him. They admitted him.
It was less than 3 months later when he passed away in a nursing home. I could not fix it, I could not help it, I could not make it better
I spent just about one year dealing with this. God bless the caregivers who do it for years. I could not sleep, I was angry, I was tired, and I did not think I could cry that much in a life time. This was my Mom's brother and I wanted to do what she would have done.
I came out the other side but I was broken. I missed myself. I wanted to be fun again and laugh.. really laugh. A few weeks later I told myself I needed to be happy again.
I was meeting friends for dinner and as an inside joke I put a tu tu on to meet them. That tu tu was like a symbol to me. I was making the choice to be happy again. All that positive thinking crap? I think it works!
Before I took my uncle to Fort Wayne I had bought him a c.d. player and some music. Johnny Cash, singing, "I shot a man in Reno, just to watch him die." Not only did my Uncle know all the words, he stood up and and did a little dance. That is the last time I saw him as he once was and it was a gift. I try not to think of the craziness that dementia brought or how he looked in the nursing home. I try to remember his face as he sang Johnny Cash and danced. He would have laughed at me in my tu tu.
