The Hopelessness

At the doctor’s appointment with my dad, when the horrible word “dementia” was first used, the doctor gave my mom and myself a book that he advised that we read. The book, The 36 Hour Day, is probably a wonderful book, but when I sat down the next day to begin obediently reading, I didn’t get very far. It may be a very realistic rendering of what Alzheimer’s and Dementia is like, but at that time, it was the scariest and most depressing thing that I had ever read. I need to pull it back out and try and read it again, two years down the road now and much more experienced with the disease. The next time that I visited dad, I took the book from mom and wouldn’t let her read it. She is naturally a pessimist and looks for the worst to happen. That book played right into her worse nightmares. She almost fell apart.
The doctor also made dad an appointment with a neurologist in Greenville to rule out any physical abnormalities of the brain as a cause. After a cscan, we met with the doctor and he showed me where dad had experienced lots of little mini strokes, which he considered fairly normal and not a contributing factor. The sad fact is that the definitive diagnosis of Alzheimer’s is still at autopsy. Dad’s primary doctor had told us that there were drugs available to combat dementia and Alzeheimers, but in his opinion, besides being expensive, they would maybe slow down the disease by a couple of months at the most. When the neurologist brought up the drugs, mom and dad both wanted to have dad try them. I can’t blame them, how do you overlook anything that gives you any hope at all. At this point, I think that sometime soon in the future, I will have the doctor wean dad off of the drugs as there is not a lot that they can do now.
So, every six months, we go to the doctor so that he can check a few vitals and ask dad how he is doing. Mom, dad and I crowd into the little examining room and wait for the doctor. He walks in and looks at mom and dad and says, how are things? How’s it going? Invariably at the same time, dad smiles and says, everything is going good and mom shakes her head and says, terrible. That’s always been my parents, mom with her glass half empty and dad with his glass half full. And then the doctor will begin to ask mom to tell him what’s going on. So they sit there and discuss dad like he is not even there. The second time it happened, I asked them to stop talking in front of him like he was not even there. Because he is not completely gone yet. He still understands plenty. He knows why he is there and who we are. The doctor told me not to worry, he wouldn’t remember anyway. I told them that did not matter, if they wanted to talk about him to make a separate appointment and talk to their hearts’ content.
I have finally made my mom understand that despite everything else, we have to allow dad to keep his dignity and respect as long as possible. He has digressed rapidly over the last year, but we need to savor every hour and every day!

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