A quick post after a roller coaster few weeks. Some highlights (and lowlights):
Don’s short term memory problems appear to be getting worse. He repeats the same question over and over, and cannot retain a sequence of instructions. If I ask him to do “a” and then “b” he will go do “a” but come back and ask me what else I wanted him to do…even when the instructions/requests are quite simple – e.g. please feed the dog, then get your gym bag. At the same time, he is still able to manage all of the “tasks of daily living,” drive, use his Iphone to navigate to unfamiliar locations, etc. We saw the neurologist last week, and while he still says it is a “grey area” the symptoms are increasingly indicative of some form of dementia, most likely Alzheimer’s. This was not a surprise, but still felt a bit like a punch to the gut. Don is now on Aricept, which we hope will improve some of the symptoms at least in the short term. We are also working on sleep issues, which both the neurologist and Don’s primary care doctor thing are playing a role, so there is likely a CPAP machine in his future. And I am working on maintaining routines, and providing enough daily activity to keep him occupied and give him some structure and a sense of purpose without having so many activities that he feels overwhelmed. It’s a challenge.
The memory issues are not made easier by the fact that they trigger both of us. I get too impatient and short-tempered (mostly out of fear, I think), and he gets angry and upset with himself when he forgets something or gets confused. I frequently feel like I am between a rock and a hard place, because if I remind him to do something (like bring his glasses when we are going out) he gets offended or upset, but if I don’t remind him he forgets and that creates its own drama.
Add in the adjustment to so much togetherness, which seems to be a common challenge if the experiences of friends whose husbands have also recently retired are anything to go by, and it has been pretty stressful. I am doing my best to manage the stress, and to do what I need to take care of myself.
I have met with a psychologist who I got to know through the Memory Club program that Don and I joined, and that was really helpful. I (and sometimes we) are going to meet with him regularly, which will give me a safe place to face what I am feeling and a way to get insight and advice from someone who is very familiar with the challenges of being the care partner for someone with dementia.
I also started two activities that have long been on my bucket list – a weekly “Introduction to Masters Swimming” class, and ocean swims with a local club. I love being in the water, honing my skills, and being with a group of people who love being in the water as much as I do. It feels like I have found my tribe. My first time out with the ocean swimming club I did two miles…I was pretty slow, and was surprised to learn the next day that I was one of only two people to complete the entire distance!
The ocean swim was tough, but it gave me two hours of uninterrupted time to just think and reflect. Finishing it was also a huge confidence booster, since I was in the company of people who are much stronger and more experienced swimmers than I am.
Other highlights of the past few weeks have included time with good female friends, including a lunch with two of the women in our Memory Club cohort who really know what I am going through, several fun social events for us as a couple, and regular movie dates on $5 Tuesday.
Tomorrow we head to Alaska for a long-awaited adventure. We’ll be gone two weeks. Wifi connections permitting I hope to post some updates….look for photos of beautiful scenery and amazing wildlife!