I remember one scene from the movie, Parenthood, with Steve Martin and Mary Steenburgen. Martin's character is watching his children in a school play and nearly sick to his stomach with anxiety while his wife, Mary is watching the play in complete enjoyment, swaying easily with the ups and downs of the ride. I liken their respective responses to some carnival rides. If you tensed up, the experience is not pleasureful, but if you could enjoy the ride, ... well, you get the idea.
Today it crossed by mind that the only way one could possibly enjoy living with one suffering from dementia is to be at peace with the uncertainty and unpredictability of the situation and enjoy how life is continuing to unfold. I am not sure I can actually enjoy it, but if I see it as a roller coaster, with some smooth track, some scary sections, and some apex moments where you are sailing on top of the world - all happening in quick succession - it certainly feels better to me. Today's ride took an unexpected twist.
The last two mornings that Mom's morning care giver, Pam, has been with Mom, Friday and today, she has called me asking for help in getting Mom ready for FRA. Pam said Mom's reaction is a natural progression of the disease, but I am not 100% on board with that yet. For one thing, Pam has had some rough patches of her own lately; when I go through hard times, I find it hard to concentrate on the task at hand, so I haven't completely ruled out Mom is aware that she is more remote and trying to get her attention. Pam has engaged fully with Mom in the past, has been very competent and very helpful to me.
On Mom's side of the equation, there was a time when she was more cooperative with Pam than with me. When Alzheimer's progresses to a certain point, the person who is losing ground to the disease will turn on the family members - those closest to them. I don't know if the progression is the same for those patients suffering from dementia caused by other factors, but Mom is cooperating with me and now with her afternoon care giver. We have theorized that Pam has replaced me. She thinks of Pam as her family and me as an outsider, but I can't say that is what it feels like to me. I still call her Mom; she calls me "Hon". She still looks at me with recognition and understanding of who I am. I am still her authority figure.
So, the roller coaster dives down and takes a twist. I have relied on Pam to be able to keep us together for some time now. She has been with Mom nearly a year. I don't want to lose her because of how important she has become to me, but she can't possibly be getting much emotional satisfaction in fighting with Mom in the mornings. What do I do now? The phone calls settle her down; she cooperates (swearing all the way, but cooperating). She lets her get her dressed; she puts on her coat; she goes to Fairbanks Resource Center, FRA.
When we asked her care givers at FRA how she was today at the Adult Day Care Center, they said she was fine - as she always is. When we got out of the car, her afternoon care giver, Marilyn, was waiting for us. Mom said, "There she is," with real pleasure in her voice. She bossed Marilyn around a little, but essentially let her get her into her PJs, clean her, and help her around the apartment ... Amazing.
The roller coaster car sails back up to the top and evens out a bit before ... what next?
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