This is a picture of my mom and mimi on the last vacation mimi took until Papa died!
"For me the hardest thing about Papa's Alzheimer's was how much his functioning changed. You know one week he would be really high functioning one week and then the next week he would have had a stroke and not be able to walk. After one stroke he couldn't even bring food to his mouth, he kept missing his mouth, and I am pretty sure he had been doing that for a while."
[Me] "Do you think that some of this was due to the strokes or the Alzheimer's?"
"It was hard to tell, you know. I mean that was part of what made it difficult because when there was a problem I wasn't even sure what doctor to see about it. Did he need a neurologist or something else?
After the first stroke, you know he really couldn't walk. I was considering buying a wheelchair. I started looking into motorized equipment for their house, but then when we visited the following week he was walking just fine. For a while initiating movement was the hard part, so I thought we could get one of those machines that helps start the action for him. Even with that his situation just kept changing so I wasn't sure exactly what to do.
Even with the support in place for my mother, the changes made it difficult to find permenate solutions. For a while he wen to an elderly day car. It was part of a lab at Virginia Tech so the people who worked there were PhD students and such. For a while the day care was awesome, and he was an ideal candidate. They did stuff with him to improve his memory and it gave mom a little break. Then, all of a sudden, he was not well enough to go and when he got a little better it just was no longer a good fit for him because problems would come up.
With Alzheimer's it is common for the person's memory to fluxuate. Some days they will be very confused but then they might have a random day of clarity! I guess in other words, I wanted to know what to do to help but because his situation was so very static I wasn't really sure how I could help."
Some Hard Truths "In the early days mimi would try to cover up for papa. When people came into a room she would give him context to go off of. For example if we came in town, Mimi would say, 'Hi, Andrea, our youngest, how was the flight from Atlanta?' so that Papa could cover up his confusion. I remember one time when Mimi and Papa got here, and Rob opened the door. Rob was in a rock-climbing shirt and Papa said to him, 'Hey Mr. Rock-climber,' but it was clear that he just really had no clue who Rob was. Later, he forgot who I was, and that was really hard. Logically I knew he didn't forget me because I wasn't memorable or because he didn't love me but because of his Alzheimer's but emotionally it was hard to grasp that my own father who had known me for so many years, had no clue who I was. My dad and I were always close and had a really great relationship and it was just weird that I could become so foreign to him. In some ways it was invalidating and honestly made me feel invisible and unimportant. I know that dad loved me but, not existing to him was almost like part of me didn't exist. In some ways though, I was glad it was me that he forgot first because I would talk to my mom about it. I think when he eventually did forget who she was she wasn't surprised which made it a little better. Of course that didn't make him forgetting me any easier. For a while, I didn't hug him because I knew he was a little confused when I did hug him. I tried to imagine what it would be like if all these people who you don't remember kept coming up and hugging you. I would imagine it would be somewhat unsettling. I am just really glad that my father had my mother's help. She was really very helpful to him and very understanding towards his attitude at times. Sometimes people don't understand that the person with Alzheimer's is frustrated with their body and can be moody or even mean sometimes. Mom really helped him to cover up his shortcomings and supported him through it all."
*Please note that the words are not all direct quotations but either very similar or exactly what was said.