Well I've been out walking
I don't do that much talking these days
These days
These days I seem to think a lot about the things that I forgot to do for you
And all the times I had the chance to
- Jackson Browne, These Days from the album For Everyman
There’s a lot of information and websites out there about dementia and Alzheimer’s disease. One particular site, https://www.dementiacarecentral.com/, lists the 7 stages of dementia and, looking back at some of the ways mom has changed over the past 15 years, so much of what I didn’t understand now makes sense.
When I read about the stages of dementia, what had been happening to mom became much clearer. However, I don’t think I would have thought something was really wrong even by stage 4, which is scary. In the first two stages there are no major cognitive changes that family or a doctor would recognize as warning signs; in fact, people with NO dementia are in the first stage. Stage 2 is defined as normal age-related forgetfulness, not remembering where you put your car keys, and difficulty remembering names. All of us probably visit stage 2 occasionally, hell, maybe that’s where we permanently hang out.
Stage 3 consists of difficulty concentrating, trouble finding the right words, increased forgetfulness, and slight cognitive decline - I know I’ve probably been in a stage 3-like place a few times already. Who doesn’t have a day or a week when you’re overwhelmed, stressed, tired, operating on nothing but fumes and grit and you start wondering if maybe you have a problem? I’ve asked myself “what in the hell is wrong with me?” so many times, but I also most likely know the underlying reasons for my wobbly state of mind. Here’s the deal that I find so disturbing with this stage: it lasts 7 years before the onset of dementia. 7 YEARS. We’re just getting warmed up, folks.
Stage 4, which is early stage dementia, is described on the website as including “difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam. Average duration: 2 years”. Ah, now things are starting to sound familiar.
The end of Stage 5 is where I think mom is now, with one foot solidly in the door of Stage 6. Mom is at the point where she’s not able to remember significant events in her past and there is no memory of what she has done during a particular day. She doesn’t need as much help with her daily activities as most do in this stage, but only because her routine extremely simple. She used to bathe and wash her hair daily. Now, if I’m not there to bathe her it won’t get done under her own steam. She forgets what time of day it is - although she checks her watch obsessively, and birthdays and anniversaries don’t exist. During one of our outings, someone asked her where she had lived before moving to Oklahoma. She replied “Virginia”. We left Virginia in 1975.
I’m not ready for the rest of what’s left. How could anyone be? I know there will be a day when her face will no longer light up when she sees me, and that’s going to be tough. But when that happens, I hope that when I leave her I’ll still get a smile and a hug and a quick hand squeeze. And if I don’t, I’ll still wrap her in my arms and tell her I love her. Because that will never change.
*Title from the lyrics of “Fountain of Sorrow” by Joan Baez