Dementia and the Importance of Medical Advocacy

sheildMy Mom lives in an Assisted Living facility. She has moderate multi-infarct dementia. Last week I noticed a pretty major change in my Mom and requested that they test for a UTI.  They set her up with a visit with the doctor. They report they tested her and would start antibiotics giving me the impression she tested positive. There was no change in her behavior two-days into the course of medicine and by the end of the day a nurse called me to say the culture came back negative and they were stopping the antibiotics.

While I was there, I found that my Mom’s feet were very swollen. My Mom was complaining that her little toe hurt and would not stop pacing. When we get off her shoe, I find that both feet and calves are twice their normal size. I had the on-duty nurse visit and my Mom is not really complaining about her feet hurting – she is almost defensive that we all think her legs would hurt. Apparently, the personal aide we hired reported this to the nurses a few days earlier (before the antibiotics).

However, no one told me or seems to be following up on her swollen feet and legs. I request that a doctor visit my Mom and they initially decide to do a test to see if she has deep vein thrombosis. They call to tell me the test came back negative.After two visits from the doctor, it seems they are done investigating.

I was complaining about the lack of follow-up care for my Mom to my mother-in-law. As we were talking I tell her that I noticed my Mom was 15 pounds heavier on the scale, but doesn’t look like she’s gained any weight. My mother-in-law suggests I tell the medical staff since it could lead them to something else going on with my Mom. Maybe she’s retaining fluid which is causing the foot and leg swelling? When I call back to Assisted Living and ask if they have been tracking my Mom’s weight, she confirms that indeed, my Mom has gained almost 15 pounds in two months and tells me she will have the doctor follow-up. Did the doctor not notice this on his first or second visit? Arrgg!

I’m getting more and more signals that Assisted Living is the WRONG place to be for any patient with dementia. The programming is not geared toward her needs and the fact that she is presented with a menu at meal time makes me realize why she might not want to eat in the dining hall. My Mom gets overwhelmed when presented with choices.

Recent research confirms that a person with dementia poses additionally challenges to the medical community since they can’t report their history or pain reliably. It turns out, the un-diagnosed issue could be leading to the anxiety and other troubling behaviors.

I understand it’s difficult to help someone who can’t help themselves, but I would think the medical staff would be more prepared to address this. Could my Mom’s “unbecoming behavior” stem from an un-diagnosed medical issue? I’m more certain than ever that someone needs to be the voice for those individuals with dementia who can’t advocate for their own needs and that our current medical system seems too busy or overwhelmed to serve. Angered. 


Related medical research on this topic:

Pain, Anxiety, and Dementia: A Catastrophic Outcome

3 thoughts on “Dementia and the Importance of Medical Advocacy

  1. Kay, does your mom have cardiac issues or high-blood pressure? It may be undiagnosed, but I would definitely have a full cardiac workup. My mom had HBP and congestive heart failure and her ankles would swell (more on the left – heart side – than on the right) when the heart couldn’t pump efficiently enough to move fluid through the body.

    Weight gain is a tell-tale sign that the body’s holding on to extra fluid. For my mom, sometimes it would be as much as 5 pounds in a day (I’d have to increase her diuretics to pull the fluid off because it really taxes the heart and respiratory system – kidneys don’t like it, but it ends up being a six-of-one-half-a-dozen-of-the-other in the long run, but heart issues are more critical care issues especially when fluid is accumulating around the heart and breathing is labored).

    Quite frankly, no nursing facility (assisted living or otherwise) will keep up with these kind of day-to-day changes like we will (we’re invested; they’re not), but if you have no choice but to keep your mom in a care facility, it is probably time to look at a nursing home. Assisted living assumes independence to some degree and they are simply not staffed for one-on-one 24-hour-care.

    I agree with you that the US medical system leaves a lot to be desired. i had always intended to care for my mom until her death and rearranged my life to ensure that I could do that. It was a sacrifice in many ways, but it was a blessing in more. I knew, in the end, no one would advocate for her, take care of her with dignity and love, and be with her 24/7 like I would be able to. It was worth every bit of it and I’d do again, in spite of all the ups and downs in the course of the journey.

    Please keep us posted on your mom. Prayers and hugs, my friend.

    1. In general, those haven’t been issues raised in any of our medical visits. My sister visited and we recognize that for some time, my Mom was not well-liked, so wonder how much of that dislike impacts her care. Sad that they know she has dementia, but then dislike her because of the behavior it has brought on. We are working through the issues but appreciate that no where will we find anyone that will care as much as family.

  2. It is indeed a frustrating experience. You prove once again how vital it is to be a patient advocate, as so many things can go unnoticed by staff. I know you will keep pushing until you get answers.

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