As it turns out, they kept her overnight for the event I described in Caregiver Challenge #1. When I came in the next day to talk to her doctor to find out her status, the doctor’s synopsis was “we need to talk…” Two doctors came in and sat by the bed, pulling up a third chair for me. They told me that their assessment is her dementia is now approaching what they consider “severe”, and we needed to “talk about her future”. Once they said that we might want to consider transferring her into a care facility, I had to speak up to let them know that’s not the agreement I have with my mother. My mother has seen friends and family members sent to care facilities, and when she broke her hip, she spent a short time in one herself. It is her greatest wish to never have to go back again and to stay home for the rest of her days. I have promised her that so long as I can care for her at home, that’s where she’ll be.
Then we talked about the reason for the hospital visit was her not taking her medications. With the daily struggles over medications, and how unhappy it makes her to take a handful of pills several times a day, the doctors suggested we consider switching to a comfort care approach. She says this is her preference… she wants palliative care, instead of trying to fix anything, she just wants to be comfortable for her remaining time.
Finally, the doctors said that due to her moderately severe dementia, combined with her extremely poor hearing (she hates wearing her hearing aids) and her poor vision (she’s legally blind in one eye and the other one isn’t a whole lot better) that she wouldn’t be able to drive any longer. My mother said exactly what she says every time the topic of her driving comes up, “I know when I can’t drive and I know when I can, I only drive when I know I can.” The response from the doctors was that she could drive again once she successfully passed a driving test, but she wasn’t willing to test again. Then they told me, at a volume that dropped my mother from the conversation, that I would need to take her keys.
On the drive home is when it started… I finally started paying real attention to what I had been dismissing up to this point. As we pulled away from the hospital, a place where she has been countless times over the last 35 years either as a patient or a visitor, and we crossed the highway it sits on, she asked me what street we were crossing. Normally, I’d have dismissed it as insignificant, but now I can’t. When we got to the house she called her sister and I heard her tell a story, then say “Well, anyway…” and she told the same exact story all over again. I guess I really have been burying my head in the sand on this topic. But, now I’m starting to understand just how much the dementia has progressed and I realize I am going to have to take an increasingly active role in managing my mother’s affairs.
Now we fast forward a couple of days: as I come into the room she’s in, it appears she has been looking for her car keys because she demands that I give them back to her. We talk about the medical recommendation, which she now accuses me of instigating—even though we both heard this together when the doctors initially raised the topic. She thinks I must have first talked to the doctors in the hallway or they would have never even mentioned it. I found that she really doesn’t remember much of that conversation in the first place, but obviously I must be to blame for this whole situation. So be it.
I do have the support of the extended family, which I’m thankful for. The following day her sister and niece came by, supporting the idea that she shouldn’t drive any more. The day after that she said she was kicking me out, said she was going to sell the place, move to an apartment by herself and everyone can just go to hell because she’ll drive if she damn well wants to. Her primary care physician indicated that he would be contacting the state department of transportation to provide his medical recommendation regarding her driving. This will mean that she’ll have to pass both the written and driving test to restore her driving privileges.
Today she said she was writing me out of her will and said she wants me out of the house by noon, to which I responded that she absolutely needs to write me out of her will if she thinks that’s why I gave up my home to move in and provide full time care for her. But, me being here is the only thing keeping her out of a nursing home, so I’ll stay.
I’m learning more about dementia now. I guess that initially I just thought it was bad memory – but now I see that’s just the tip of the iceberg… and each day brings something new.
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