Ralph’s Newest Test Scores-Not Great

Ralph went in for his annual mental check up last week.

Ralph was first diagnosed with MCI (Mild Cognitive Impairment almost eight years (eight years!) ago. At the time his personality and interests were what they’d always been despite his memory issues. I remember being angry in the months (years?) before his diagnosis, thinking he never remembered what I told him because he wasn’t paying attention, or even less attention than he used to. Getting an actual diagnosis was almost a relief for me—having a name to excuse Ralph’s behavior, at least in one area. He was upset, anxious and scared, but as I kept reminding him, MCI, stood for MILD impairment.

For years Ralph was what one of his former practitioners called her Poster Boy for Alzheimer’s Care: year after year he avoided the cognitive and behavioral slide statistics predict. While I noticed subtle changes—slowing down, turning inward, growing passivity—his actual memory skills held pretty much steady from year to year. Then last year’s tests showed a slip from MCI to Mild Alzheimer’s. Still, MILD, I reminded myself. 

I knew we were lucky yet I have sometimes felt a tinge of resentment when friends, family members, and even professionals didn’t notice the changes I saw. Was I imagining things I something wondered.

At the check up Ralph and I are interviewed/tested separately. Despite having noticed, and written posts about, more recent changes in Ralph—his growing lack of interest in talking on the phone; a drop in his problem solving that shows up as confusion managing minor tasks he used to handle adeptly; and some loss of memory about the far past—I told Dr. K. that despite what I’d noticed, I didn’t expect his test scores to drop. A moment later Dr. S. came in and dropped a small bombshell: Ralph, who has dropped a point a year at most in the past, dropped three points on the 30 point MpCa scale this year, moving from Mild to Moderate Alzheimer’s.

Knowing the numbers doesn’t really change anything. They just acknowledge the changes I already recognized. But I do find myself thinking in new ways about the future and how my needs as a caregiver are bound to change. The last six months of hip and back issues that impede my own mobility—I hope temporarily–have colored my thinking. Last week I was in something of a funk, wondering if I should sell our house, the one I moved us into barely 20 months ago and spent a huge amount of energy renovating. I thought about elderly high-rise living, a place with a memory wing of course. But today, I am more upbeat. There is no knowing the timeframe in which we will be adjusting. All I can do is adjust day to day. So, the other day, after he suffered an anxiety attack while I was having a quick dinner with a friend—fifteen calls I in the space of half an hour inside the restaurant and several more calls after I talked to him because he couldn’t remember what I’d just told him—I bought a white board. Not to remind Ralph to keep to his routine, which would be a waste because he wouldn’t remember to check off activities once he did them, but to make sure he can see in writing where I am at any hour of the day. He loves it.  

I’m sure there are more small innovations to come, and more anxiety.

6 thoughts on “Ralph’s Newest Test Scores-Not Great

  1. OMG… thank you for this. You know, we see things, but we don’t really SEE them until someone else mentions the same situations/symptoms. 1. Robert hates to talk on the phone now, even to his sons, but especially to his brother who is very talkative (and he asks why people want to come to the house to visit–even family!); 2. He forgets where I am but doesn’t call me on the phone because he can no longer dial the number; 3. He’s more passive than ever before, reluctant to leave the house unless it’s to take a ride somewhere he wants to go (i.e., Wendy’s for a frosty). I saw these changes, but didn’t look at them as part of his Alzheimer’s. He was diagnosed six years ago and he has episodes now that are stark reminders to him that his mind no longer functions the way it used to. Recently, during one of these spells he asked me how other people handled living with Alzheimer’s. I told him I didn’t know but I did know that every one is different and the disease is progressive. I told him I was glad his progression had been slow, and that no matter what happened, I would always be there to help him through it.

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  2. I only had my husband tested once. It is really obvious this year that he has gone downhill. He is now always surprised when I tell him that we have been married for 51 years. I wonder what he thinks I am doing here LOL. He has no curiosity about things and no real interest in doing work to help out except for Golding laundry. Sometimes when I am desperate I create a basket of laundry by pulling clothes out of drawers. He has no recollection of ever doing yard work and basically asked me if I had fired a Gardner. I hope you are able to stay in your home but I totally understand if you need to move into someplace more manageable.

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    1. What you describe sounds very familiar–except the laundry which Ralph would never think to sort, but never thought to sort before Alzheimer’s either. At this point do plan to stay, but I also recognize that there is no knowing what decisions will have to be made moving forward. Thanks for writing

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