Human subject(s)

Since I saw Mom on Tuesday, I haven’t talked to her. She hasn’t called me and I haven’t called her. I often say that no word from Mom is generally a signal that she is content, satisfied, not worried, not thinking something bad is happening, not feeling like she is lacking something. But I can’t help worrying, too, that she forgets she can call, or she no longer knows which number to use, or her social abilities are slipping, or something like that. I will call tomorrow if she doesn’t call me. And then I’ll probably see her sometime this weekend.

Tomorrow I begin a five-year clinical trial – for me. Mom went through two clinical trials testing the effectiveness of potential Alzheimer’s drugs. She completed one, but she had to stop the second trial because when she moved to assisted living, the nurses didn’t think they had a doctor’s order for these mysterious unmarked pills, so they didn’t give them to Mom for more than two weeks. That ruined the protocol, and she had to be dumped from the trial. And the nurses did, in fact, have in their possession a doctor’s order for these experimental drugs. So they felt terrible. I felt terrible for the investigator, because every human subject is precious in medical research. But I admit I was secretly a little relieved, too, to be able to stop with the monthly visits to the clinic. As for the results, I have no idea. I always suspected Mom was on placebo in both studies because she showed no signs of improvement. But that could also mean the experimental drugs didn’t work out after all and she was getting the active drug. We will never know for sure.

This time, my health and stress levels will be studied in relation to my role as a primary caregiver for a relative with Alzheimer’s. I’ll be at the study site for about four hours tomorrow answering lots of questions and giving a lot of blood – a quarter cup, they tell me. I already know from previous studies done by this research group that caregivers tend to have so much stress that their lives are shortened by four to eight years compared to how long they’d live without the caregiving burden. Kind of a bummer. I want to defy the odds. I think I’m in decent health, but I also know there is plenty of room for improvement. Only time will tell what the stress hormones have to say about my future. Should be interesting.

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2 comments so far

  1. kewyson on

    Best of luck with your activities –

    We don’t really know each other, but we are beginning to share a similar path – aging parents is certainly a different cup of tea –

    Some days, I just don’t even want to reach out – maybe somewhere subliminal, who knows – maybe a bit of self-preservation – but I completely understand your actions.

    Hopefully, with all of the new studies, we’ll find ways to make dementia / Alzheimer’s a manageable condition – that’s my hope, anyway.

    Best of luck

  2. momsbrain on

    Thanks! I completely understand self-preservation being at the heart of many an action – of all kinds, under all sorts of circumstances. I share your hope for some sort of progress, manageability, something, anything that can make dementia less terrible.


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