A cousin of sorts (I can't keep straight 2nd cousins and once removed cousins and any other qualifier that goes with family relationships....and even if I could I can't remember just how this young woman is related to me, whether the daughter or granddaughter of a cousin, or what. I just know she's family) today sent me a link to a video called something like "12 minutes with Alzheimers," in which two people, a newswoman and a caretaker for a wife with Alzheimers, were fitted with various assists to help them understand what it's like to live with Alzheimers, as they attempted to complete a handful of simple tasks, like finding a tie and putting it on, setting the table, finding a white sweater, etc.
They had something on their eyes to mimic visual impairments like macular degeneration or cataracts, their hands were wrapped in rubber gloves fitted with things that would mimic arthritis, they had things put in their shoes to give them the feel of someone with arthritis or other problems of the feet, and they wore earphones to keep a low-level noise in their heads at all times. It was amazing how quickly they mimicked the previously videotaped movements of persons with Alzheimers, experienced extreme frustration, and began to understand what it was like living in that world.
There were other videos on YouTube that I watched, identifying the signs of dementia and Alzheimers and tips for coping with it. One of them talked about the importance of being in the moment when dealing with someone with dementia. The videos were wonderful in helping me understand why, for example, making any decision is not only difficult but seemingly impossible for my mother. They helped me understand why so often what someone says to her doesn't seem to penetrate at all. They made me realize that the time for helping her to understand anything of great importance to me has passed and is never going to come back, and I have to let that go.
In truth, I think caregivers of loved ones with dementia are truly heroes. It's a 24/7 job, with no vacations, coffee breaks, or time outs to be alone, without making arrangements ahead of time to be sure that your loved one will not be unsupervised. I am so fortunate to have found Atria, a place that she really seems to like and where I feel she is as safe as she can be, while still living independently, yet only 5 minutes from my house where I can (and do) see her several times a week.
I am also so fortunate that my mother hasn't retreated completely into the world from which there is no return. She can have a reasonable conversation (many times!), she can handle her own activities of daily living, she still recognizes people. It's just that the memory loss is worsening. She is afraid of becoming like her mother (who also had dementia, though she died in her 80s, I think) or her sister (who was in the Alzheimers world when she died at age 81). She is enough aware of her memory problems that she is embarrassed that anybody should know how bad it is -- though she herself doesn't have a clue how bad it really is.
I don't know what is ahead for her, but at this time of the year, as I have done every year for the past few years, I realize that this may be her last Christmas. She may have a dozen more in her, but at 94, looking at the possibility of this being her last Christmas is not unreasonable.
I need to concentrate on being in her moment and making this time of her life as rich as I can, letting her enjoy camaraderie on her level, having that "do you think I'm going to make a hunnert?" conversation a dozen times in an afternoon, if that is important to her. I need to stop worrying about how quickly her dementia is progressing and start concentrating on what she has left and how to be with her in the most meaningful way now.
As I keep saying, every time I go to Atria, I feel like I'm going to Fantasyland and some days it's easier than others, but I think the best gift I can give her this Christmas, and for the rest of her life is to fully participate in whatever is her level of interaction on the particular day. To make every day meaningful on a level she can appreciate. To find funny stories that make her laugh, or fragrant flowers that always delight her. To continue to make books for her that prod her memory without her realizing that her memory is being prodded.