It is very difficult to consider taking away someone's right to self-determination. I have found that it is necessary in order to keep my dad safe and the community safe from him. If it was up to Dad, he would get a job and a car and his own apartment. [Amazingly, he still has a valid driver's license from his home state despite my best efforts otherwise. I reported him as an impaired driver but they gave him back his license anyway. He went on to have five car accidents in five months and they allowed him to keep his driver's license...]. Dad is not able to navigate around his neighborhood these days on foot, stay away for anything like four hours at a time, or keep himself safe. If it was up to my dad, he would not take any medication for anything. He would go to a dentist but not to any doctors unless he was developing a flu or something like that. And he would also be treating his growing baldness with an expensive chemical treatment from a bottle.
To those who were and are able to keep their loved ones at home, all I can say is "Bully for you." We endeavored to do the same. But it didn't work out so well. My housemate was upset because having Dad in residence was like living with two of me. Dad's politics and obsession with a certain news station were grating to the housemate. From morning when Dad's pacing woke me up until he went to bed at night, I was his entertainment. Even in his dementia, he wanted to go, go, go. He refused any outside help-- he didn't even want a friend "housekeeper" coming in to our home so I could get an hour or two off for errands-- and also refused to even consider any form of day program or respite. Having to watch that he was taking his pills was also wearing. Dad did not want to go to his medical appointments either. I wasn't able to leave for twenty minutes in order to walk the dog without worrying that Dad would let in anyone who knocked on the door. So no, this wasn't working. In spite of my best efforts, I could not make it work. Dad was not and is not tractable. I have the greatest respect for those who take care of their loved ones in their homes. Please don't judge me because I wasn't able to.
There are some things that Dad is still able to do. He follows politics and voted in the last election. He can pick out what he wants to wear. He can shower and shave. He can decide whether or not he likes someone. He can express pleasure and displeasure and worries and joy. He has opinions. Here are some things that Dad can no longer do: balance a checkbook, dial a phone number successfully, accurately relay his medical history to medical professionals, recite his current address, cook, play cards, drive safely, reason out a complex problem, write clearly, decide to pay his bills without prompting. Actually, Dad is resistant to paying any bills except for his rent and his cell phone. Consequently, he no longer pays his bills. That is taken care of for him out of necessity. Dad does not understand why dentists cannot take time payments or that his cable bill and his cell phone bill are two separate bills from two separate companies. Some days [although the days are fewer and farther in between these days], Dad recognizes that he has dementia-- but he can no longer recall which kind he has-- and he will say that his "brain is failing." Other days [most days these days], he says he is in excellent health except for his eyesight and that his forgetfulness is just regular "old age."
There are things about my dad that I wish I had never learned. There are other things about my dad that I treasure knowing. I love my dad. It is difficult to witness, this losing of his self. I am privileged that I can visit my dad and comfort him [sometimes] and laugh with him and make sure that he is getting his needs met and some of his wants. Even though Lewey Body Dementia sucks-- all dementias suck-- I would not have missed the experience of having my dad living nearby for the world. Eating lunch with Dad, sitting on the sunny open-air porch with Dad, hanging out with Dad while listening to some musicians that the house has brought in for entertainment, socializing with Dad and his housemates, spending quality time with Dad-- this is the stuff that memories are made of.
There is a new dog living at Dad's house. The new dog is a joy. All of Dad's housemates appear to really like the dog. The dog is willing to be petted but is not demanding of attention, doesn't jump on the furniture, is quiet and doesn't really bark. The dog's presence has gotten Dad and the others to talk about dogs that they have known and loved. The dog is an older dog who was not able to tolerate being left alone in his foster home. Because the dog found a place in assisted living, he was saved from a certain death. The dog is never alone. The house is never empty. In a sense, my dad too was saved from a certain kind of death. Dad considers the assisted living house to be "home." After his recent hospitalization, Dad remarked, "It's good to be back home." Dad is comfortable there. He is comfortable enough to kick me out. When he's had enough of visiting, he says to me "It's time you got going." And I can go now, knowing that my dad is cherished and looked after and that he has other people there all the time. I hope that Dad will die in his sleep at the assisted living home. I don't want Dad to have to be transferred to a nursing home. I'd rather he go to bed one night at the assisted living place and drift off and just not wake up again. Dad is as happy as he can be in spite of the lesions that are ravishing his brain.
sapphoq on life