I had two weeks to spend with my mother and father this summer. The purpose of the trip from Minnesota to Youngstown Ohio, my childhood home, was to clean out and eventually sell our family home. If you have ever gone through an old room, forgotten drawer, or cluttered closet, you know what happens. Seeing a self-portrait, you created in 5th grade art class brings back vivid memories of your ten-year old self. As you sort through books, barbies, and mixed tapes, you are amazed at the smells, songs, and times that you remember clearly. As I was wading in memories, and lots of boxes, I found that one memory was lost forever.
My father is in late-stage kidney failure. He is on dialysis and has been in a state of cognitive decline for at least four years. He is no longer the formidable and brash, “larger than life” persona he once was; rather, he, like many aged loved ones is rather weak and passive. His personal care has been complicated by the fact that for most of the last 15 years, he was estranged from the family. When my mom began caring for him again three years ago he was already in a moderate stage of dementia.
Do you know about the memory test? He took the Mini-mental State Exam (MMSE) as part of a veteran’s clinic medical checkup. I remember my mom telling me over the phone that he got a 13 and was asked questions like, remember the words, toothbrush, glue, rabbit and repeat them a minute later and, draw the face of a clock. Not hard stuff. A score of 13 to 20 suggests moderate dementia. Well, I should know how to interpret Dementia. After all I am a Cognitive Psychologist and I teach a chapter in Human Memory class on aging. For the past 10 years I’ve gone through the facts with my undergraduates. “Dementia is not one disease, but a general term for types of cognitive decline. The most common form of dementia is Alzheimer’s. There is no official diagnosis for dementia and most people recognize memory loss when it is too late to intervene.” I’ve even shown a video of a couple, married 50 years, where one partner no longer knows the other due to Alzheimer’s; most of my students watching it in class easily hold back tears.
Back to the end of Day 1 in Ohio. I kissed and hugged my dad goodbye for the night. He took my arm and said, “you are a real nice lady.” The shock hasn’t worn off yet. How could my father not know me? No, I haven’t had time to ask questions or discuss important life lessons with my father!
I am a cognitive psychologist after all so, WHAT SHOULD I DO? As our family makes decisions about the next stage of my dad’s care I wonder, what will he think if he moves to assisted living? How will we be comfortable knowing that he is okay with doing so? How can he speak for himself?
I write this because I want people to know how little we currently know about dementia and how vulnerable I feel about my own knowledge. I probably understand more about how memory works than 95% of the population. How does the average person, who may not understand memory well at all, cope?
I turned to the Alzheimer’s Association. Here I found a 24/7 helpline 1-800-272-3900 and called. The most knowledgeable, well-trained person comforted me on the line. After a short discussion and about the best listening I’ve experienced in a long time, I have a 2-year-old and a 6-year-old, the man on the other line drafted me an email full of resources SPECIFIC to my father. The Alz.org site is full of insight. “Know the 10 signs” lays out behaviors to watch for and explains how to spot these over normal signs of aging. Take sign number 3, “Confusion with time or place.” A person with dementia may lose track of days, the present moment, and the general passage of time. This is sure different than an age-typical behavior of being confused about what day of the week it is, only to correctly remember a few moments later.
I think the public, my students, and me can benefit from learning the most we can about memory. Dementia, like other horrible diseases, is a great equalizer. THIS PUBLIC HEALTH CRISIS DESERVES MUCH ATTENTION. After all, who will you know that loses their memory before losing their life?