Yesterday my 94 year old mother let me know that she will be married next week to Shawn, her 32 year old nurse at the nursing home where she lives. She asked for my thoughts on what shoes she should wear. Just last week she was certain that a robbery had taken place at the nursing home and she had been called upon to investigate. I wheeled her up and down the corridors while she scouted around for clues.
My mother has dementia. She has been living in her small private room in skilled care at Milltown since May. She is no longer the same woman – bright, funny, cultured, and articulate- who could quote Shakespeare, was never without a book in hand, and was always up-to-the moment on current events. I certainly wasn’t prepared for this new phase of her life and, I dare say, neither was she. It sucks for both of us.
I have done my share of reading on the subject of dementia, talking to mental health professionals, and sharing experiences with friends whose parents suffer from a similar condition. It all helps make things a bit easier but the truth is that no one really knows how to treat dementia successfully or prevent its inevitable and catastrophic progression. It is also true that the symptoms of dementia vary from person to person, and even from day to day, so you never quite know what to expect.
Like many other 60 somethings I am learning some small truths to keep in mind if I expect to accompany my mother to the end of her sad journey.
1. Don’t overdo the empathy. Getting too caught up in my mom’s frustration and confusion doesn’t make me a better caretaker. Boundaries are important.
2. Don’t push. If my mom chooses to sit for hours hunched in her chair, ignoring pleas to at least try some of the activities, it’s her prerogative.Too much pushing can become bullying.
3. Tastes change. Just because my mother once loved Bach doesn’t mean she still wants to hear classical music every time I visit.
4. Beauty care is therapeutic. When my mom gets her hair done and her nails manicured, it boosts her morale (and mine), well worth the effort and expense.
5. Bring cookies. The nurses and aides aren’t always as prompt, responsive, and cheerful as one might wish, but they need to be thanked and appreciated for the difficult jobs they do. Get to know them.
6. Don’t interrogate. Silence is better than a barrage of questions, no matter how well meant.
7. Try to be sensitive. Even in the midst of a delusion, my mother can tell when she is being patronized or made fun of. She can still sense when people are laughing at her as opposed to laughing with her.
8. I can’t fix her. My mother will never go back to the way she was, no matter how hard I try to coach, counsel, or explain.
9. Keep visits short. Realize it’s an effort for my mom to maintain her grip on social niceties
10. Try to shut out the scary picture of me, sitting in my mom’s chair, 30 years from now. Not helpful!