A few weeks ago, I had a conversation with a friend about Marcia’s overall condition. To her, Marcia’s speech difficulties had rapidly progressed. Surely there is something we could do, and maybe the memory issues are not really relevant. It’s true that Marcia’s Aphasia condition has measurably progressed. Riley and I are able to help Marcia communicate with us, but it’s becoming harder to do that. Ryan has a harder time and really doesn’t know how to help her. He may be frustrated, but he doesn’t show it in an inappropriate way.
But it’s definitely more than just the speech. Every Sunday I write out details of who is picking her up and when, and if someone is bringing dinner by, I write down who is coming. As a side note on both the driving and dinners. What a great help!! Marcia really doesn’t seem to miss driving and she gets out of the house every day, which is clearly an important thing to keep her from boredom and depression. The rides give her time to be social, and she’s enjoyed the variety of people who have taken her to the YMCA, Healthquest, the grocery store, getting her nails done, etc…. Since Marcia isn’t cooking anymore, the meals have been overwhelmingly helpful. I only wish I could do more than just saying thanks. Marcia can’t really process a lot of information, but disorientation is showing up. One night she woke me up sometime in the middle of the night because she couldn’t find the bathroom. She didn’t remember much about that in the morning, but is this just the beginning? When awake and alert, she shows no signs of disorientation. This wasn’t the first time this nocturnal disorientation has happened. I suspect this will slowly increase over time.
Every AD case is different, and clearly Marcia’s has a heavy Aphasia presentation. I’ve read, and have had people send me so many interesting articles on what’s going on with AD. There are a lot of theories about what causes the disease, and everything from too much iron (but too little is harmful), red wine is good, red wine is harmful, not enough leafy vegetables, chemicals from pots and pans, etc… so what do we do? Lab rats and mice seem to be close to having AD eradicated from their world. Lucky for them. There just hasn’t been the translation yet to humans. But there is promising work being done. It will just take time. And what I know of the FDA and what is required to prove a safe and effective drug; I’m not that optimistic we’ll see anything on the market anytime to benefit Marcia.
Am I doing enough for Marcia? Do I have to do the research and testing on my own? What about the kids? Riley is amazing. She did the grocery shopping last week while Marcia was getting a massage. I’m thankful for her drivers permit and her grown up approach to helping. How much does Ryan need to know?
I understand how the average AD patient has 3 caregivers who give about 20 hours a week to their care. But I have a job and kids to care for….
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