My todo list is overflowing, my emails are piling up, I have 17 pages to read in my book and all of these are things I enjoy doing. But my mother has just called me for the fifth time in less than 60 minutes about the new safety monitor we got her for Christmas, the 5Star Urgent Response. New things challenge her and the idea of having both a cell phone and this device is beyond her ability to assimilate. As I sit at the kitchen bar trying to concentrate on any number of items the phone rings two more times. It’s not that I don’t want to work more but my spirit is broken by the phone calls. I give up and walk toward the stairs to the bedroom. My mother must have picked up on my frustration because when the phone rings again, it is not mine. My husband picks up his phone which is playing “Mother-in-Law” (see below). Over the years, as my patients have aged along with me, they have told me their woeful stories regarding their parents. I knew my time would come and over the last year my 84 year old mother has diminished with each month. She refuses to take any “more” medication and, like many of the dementia patients I’ve treated, doesn’t see the problem. Since the evidence on the “Alzheimer’s medications” is not all that convincing anyway, I am not willing to fight over it. She limits her driving mainly to daytime and to places she knows. But if you throw anything out of the ordinary, like the new device that she needs to clip on her person and charge every night, it becomes a nightmare. Not only for her but for me and my husband as well. My daughter has already approached her about moving into a personal care home but she will have none of it. She has good days and bad days. My job keeps me busy and disinclined to force the conversation. It is coming. My patients have prepared me for it and I thank them for this. But just like them, there is a black hole of dread that I see approaching. One thing for sure, while I will avoid discussing what is a personal matter, my empathy will go out to the next adult child dealing with their unwilling parent.
À la recherche du temps perdu is a novel I have wanted to read for years. One volume of it sits and mocks me on a bookshelf in my bedroom along with the other thirty or forty books I would really like to read. In English, Remembrance of Things Past by Proust is a classic novel about involuntary memory–the act of remembering events in the past brought on by something in one’s present. This weekend was filled with “memory”, dealing with the beginning consequences of my mother’s worsening memory as well as the remembrance of when she had this issue involving her mother, and the fear of my own children dealing with the same in the future.
Like all physicians, the issues that I face at home are frequently the same issues my patients face in their lives. Having many patients around the same age that I am, my empathy can be very acute, even painful. Sometimes I am caring for both the declining parent as well as the child, usually a daughter or daughter-in-law. Over the years I have watched Alzheimer’s disease take away the intellect and independence from a patient and helped the caretaker deal with the grief as mom or dad is whittled away to nothing. It’s a painful, frightening process, well-illustrated by William Utermohlen‘s portraits, as he traveled this dark path.
The most frustrating part of the dementia process is the frequent refusal of patients to take any of the meds that help slow the process down a bit. No cure, but sometimes a medication will keep the patient at a plateau of functioning for a period of time longer than if the patient takes no medication. Typically, it is a very hard sell. Perhaps some of the problem is that no one wants to admit it exists. Agreeing to take the medication means they have to face a fear-provoking diagnosis. My own mother becomes vehement in her refusal to take anything. She won’t even let me help her get a medical alert necklace or bracelet in case she falls. What is with that? The reasons vary from “they are ugly” “my friend had one and when she fell she was out of range” to “I’ll take care of it”. Meanwhile I feel as helpless and frustrated as the caregivers I see in my office every week.
Some days, the Serenity Prayer is the only thing that keeps me sane.