Article Three
On Deciding When to Get Tested
Q. On your website, you begin at the point of the neuropsychologist’s office. I was wondering what led up to making that appointment? What were your first hints that something was wrong? What moved you to see a neuropsychologist?”
A. It was a long haul. We first noticed short-term memory lapses and repetitive questions more than ten years ago. This was soon followed by temporal and spatial confusion and difficulty recalling names. I feared what was happening (because Gayla’s mother and aunt had dementia), and I was in denial. Finally, it became so persistent that on June 5th, 2014, I wrote the following letter:
Gayla,
I am writing this letter because I love you so much. And I am always going to be there for you, just as I know that you will always be there for me.
We have talked about how we are both experiencing memory lapses from time to time but that you have been having even more difficulty than I. Both Brooke and Robb are aware of this and are concerned. With your family background, there is the possibility that this is the early stage of what may eventually turn into dementia. Brooke is concerned enough that she even attended a program about Alzheimer’s.
I have been told that nearly half of all people eighty-five and older have some form of dementia. The probability for you is high because of your family genetics. The question you should address is: What, if anything, do you want to do about it?
Brooke learned at the presentation that there are some advantages to having an assessment done early. If memory lapses are caused by something other than dementia, there are corrective actions that can be taken. In cases where dementia is diagnosed early, medications can extend higher functioning for up to a year. There may also be some comfort in knowing more about what the future will bring.
The other major alternative is to continue living our lives as we now are. Let the cards play out as they will and enjoy our lives together as much as we can, while we can. The advantage of this option may be less stress because there won’t be the anxiety associated with getting annual assessments. The choice is entirely up to you. As I said, no matter what happens, I will always be there for you.
You are the light of my life, and our relationship is the best thing that ever happened to me. I love you with all my heart. Together we will make the most of whatever is coming.
Gayla chose to live her life as fully as she could for as long as she could. The decline continued and in March 2019, we experienced an incident on our vacation to Palm Desert. One day after arriving, she became terribly confused and wanted to go home. Later that spring we were visiting some neighbors and Gayla explained that she had grown up in Boulder and we had met in New York City (both observations were untrue). She had difficulty concentrating, reasoning and making decisions, disjointed conversation patterns, and fading long-term memories. In May, Gayla had her annual physical, and I advised our doctor that she was showing signs of memory loss. He administered the MMSE, after which he put us on a course that led to the October 2nd diagnosis. When the results were delivered, she was unwilling to accept the findings. She knew something was wrong, but with her long history of overcoming barriers, she was convinced that she could overcome it. This is fully understandable; she had always been able to accomplish her goals.
Now, ten years after I wrote the letter and five years after her diagnosis, Gayla is living at Cherrywood Village, a memory care home that best meets her needs. The good news is that she has adjusted to her new living situation, loves the staff and the residents, and has been happy most of the time. Let’s hear it for optimism!
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