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

When They Believe, So Do You: Dementia and the Truth

locked  doorMy Mom is now sundowning and paranoid. The doctor has recommended new medications and the staff has asked that we hire additional support who can help redirect her from 1 to 9 PM daily. It seems odd that she would need additional support given she is in Assisted Living, but she is a very mobile and moving into more behavior that is resulting in concerns for her dignity when she wanders into the Independent Living community where she lived for more than a decade. She is getting very confrontational and Independent Living isn’t staffed to help her.

The doctor has adjusted her medication and we just hired a personal assistant who has been told to lurk in the hallways and be as invisible as possible. As I’m leaving a late night tennis match, my Mom calls to tell me that they are trying to move her out of her apartment.  She tells me she will “barricade the door” until I arrive in the morning. I tell her I’m coming over now. She is relieved.

When I arrive, I stop by the nursing station and they tell me they saw my Mom walking to the Independent Living dining hall, but had nothing to report. I ask if they had seen anything to give my Mom the impression she was being moved from her apartment. As soon as I ask, I realize how silly my question sounds. They smile and tell me “No.” My Mom was very convincing on the phone — I know she believes what she tells me which is heartbreaking. I imagine how frightened and alone she must feel.

When I get to my Mom’s apartment, she is wound up and happy to see me, but doesn’t mention someone trying to move her out and there is no evidence to support what she told me when we spoke 25 minutes ago. She doesn’t even remember calling me. However, tonight she is frantically moving around the apartment. I suggest we find her pajama’s so she can get ready for bed and I can go home. We spend almost 40 minutes looking for her pajama top. It’s a two-room apartment, but my Mom continually embarks on a different task and I try to settle and redirect her which makes the search so lengthy.

I step out and request something to help my Mom settle down. They give me a dose of Ativan and I set the pill container on the kitchen counter. When my Mom sees the pill, she quickly picks it up and takes it — I didn’t need to prompt her. We never do find her PJ top and after 2 hours, I realize my Mom is not going to go to bed or change into her pajamas as long as I’m “visiting.” When she starts to yawn and slow down after the Ativan starts to calm her, I kiss her good-night.

I recognized years ago that my Mom believed what she was telling me. Usually it was that she was paying the bills or ate breakfast — things I knew not to be true because I was doing them or had been with her all morning and she refused breakfast. It’s harder to know the truth when you aren’t with her, my Mom can still be very convincing.

The hardest part is that I know she believes what she tells me. My Mom is all alone and I wonder how to help her be more at peace. Challenged.