I know you want to. I know you would rather have anything other than dementia—even cancer. I know you are happy with your life and want it to continue as it is. If it has to change, I bet you’d like to slowly become more frail until one night you just die in your sleep. You do not want to slowly become more confused. You don’t want to live in a nursing home. And you especially don’t want to be unable to recognize your children or control your bowels.
Arguing about your diagnosis isn’t going to get rid of your dementia. If your doctor has said that you have early dementia, or some memory loss, or a touch of Alzheimer’s, the chances are very good that you do. Denial will not help. Your memory doesn’t care what you think about it.
Your doctor probably had you do a memory test. These often involve drawing a clock, doing some subtractions, remembering five items, and naming animals. If you didn’t do well on the test, in all likelihood, you have some memory loss, perhaps even dementia. (It’s a continuum from normal to “mild cognitive impairment,” all the way to end-stage dementia.) Not all memory loss progresses to dementia, and sometimes, very rarely, memory loss can even reverse. We cannot predict whose memory will get worse, who will stay about the same, and who will improve. In general, we can talk about the average time course, but each individual with memory loss can progress at a very different rate.
You cannot control any of the characteristics of your memory loss. We cannot predict which kinds of memories you will keep and which you will lose or in what order. We don’t know why some people get memory loss, and some people don’t. Even if we knew exactly what caused your memory loss, we can’t change the past. Do yourself and your loved ones a favor, and don’t put your energy into trying to control these things. Instead, figure out how to make the next few years as enjoyable for yourself and your loved ones as you can, and to limit the negative impact on your loved ones of your illness.
It will do no good to deny your memory loss. The decline of your memory will progress regardless of whether you acknowledge your dementia or ignore it. Acknowledging it allows you and your family to make plans. Ignoring it leads to discord later on, possibly when you are not fully able to express yourself because you have lost so much mental acuity.
The main issue that I see families and their loved ones with dementia fight about is not just driving, but cooking, need for showers, and managing medications also figure prominently. If you start talking about these issues now, and making plans that seem sensible to you now, later when you are not thinking as well, you may be able to rely on these pre-made thoughts to help you through.
Even people without dementia usually prefer to continue doing whatever it is that they are doing. People with dementia find stopping or starting an activity to be even more disturbing. Now would be a great time to start the habits you want to have when your dementia progresses. Trusting your family and your doctor to help keep you safe is a great start.
Mary Braun is an internal medicine physician.
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