Dementia: Life in Reverse

Mother’s dementia is progressing. I’ve mentioned in other posts, that she needs a caregiver all of the time, except when she is sleeping (she sleeps soundly). She is almost always confused, asking many times a day, “What should I do?”

I find myself searching the web for confirmation of what I see each day. Today I found a support group, Aging Parents and Elder Care, where people are sharing experiences and offering help and consolation to one another on many aging parent topics, including dementia. It looked interesting but I am not ready for this type of interaction — yet.

Mother gets to make very few choices in her life, but we know that a lot more goes on in her head than gets expressed. Most of her wishes are expressed by hand motions, sometimes discrete pointing and at other times wild waving. However she has some firm preferences. These preferences do not always correspond with what we hope she will do. She wants to use a wheelchair. We encourage her to walk  because we are afraid she will forget how. She wants to skip activities. We encourage her to go these events with her caretaker, because the stimulation will be good for her. Mother does not like liquid medicine and does like pills (and she can still swallow them), but the doctor has prescribed the former.

After a conversation with Brandi, mother’s morning caretaker, I am thinking that Mother should be the boss here. While we all have great ideas about how to help her get through her day, she should be the one who calls the shots as long as she demonstrates her preferences. If she wants that wheelchair, it seems like she should be able to sit in it, especially during the long, 500 foot trek to the dining room. If she wants the pills rather than the liquid, as long as she can swallow, she should have pills. Moreover, activities that are busy and have a lot of interaction are not helpful, even those on topics that she used to be passionate about – reading, Broadway Shows, The New York Times and New Yorker, theatre. We are in a different universe.

Hospice professionals and the professionals at her assisted living facility and especially her caregivers are supportive, helpful and loving. We are fortunate. Moreover, Mother was clear and detailed about her wishes and expectations for this period of her life,  so our decisions are minimal. Support and love — that’s about it.  Oh…and a lot of time to watch and observe a body and mind moving in reverse speed.

We seem to be descending down a set of steps.  These past few days we have clearly taken another step down, but we have no sense of how long the descent will take.

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