If you saw the movie Still Alice it might have left you with the feeling that you had a picture into life with early onset or younger onset. I thought the movie did a great job depicting the first few years but it ended just when the physical effects get really tough. It failed to show Alice needing help to eat, drink, or bathe. There was nothing about her days with no language, intermittent sentience, the daily grind of handling a nearly inert body. My dad has had my mom’s entire care in his hands for nearly 5 years. She no longer can move under her own accord. The end is not in sight.
Dad does amazingly well but the toll is obvious to Burt and me since we see him only intermittently. He’s got help every day but he’s lonely. We all miss mom. She was funny and kind as a parent to an adult child. During this trip I only saw one moment of awareness during an interaction with me. There was no recognition. She merely said uh huh when I asked if she was thirsty and then she took a big sip from the straw I offered her. Her muscles are contracting. The body is stiff and beginning to curl into a fetal position. Her eyes are usually closed. The lack of recognition is sad but freeing. When a mother forgets their child it is a profound cutting of the chord. I remembered how she liked to shop and would have enjoyed helping me pick out some new clothes. We all get a laugh out of feeding her foods she would have rejected if she knew what she was eating. This trip is was mussels. Another time it was eggplant parmesan. Once we fed her a bean burrito. I think it’s harmless and humorous. I wish and hope she is comfortable but I can’t really tell. Nobody knows how long she can last like this. Dad says he will as long as he must.