Acceptance, Alzheimer's, Dementia, Expectations, Gratitude, Illness, Letting Go, Mild Cognitive Impairment

Blessings and Challenges

It’s hard to believe that it has been nearly a month since I last posted, and what a month it has been!

We went on our long-awaited Alaska adventure on July 29th and had an amazing time…hiking, kayaking, animal spotting, and just enjoying one another’s company in all of the natural beauty.  I don’t know whether it was the donepezil (generic for Aricept) or the vacation, but Don’s memory issues were a bit better and he was able to participate in all of the activities and interact well with our fellow travelers.  It wasn’t perfect – he still repeated a lot of questions and needed detailed written instructions to get himself to activities without me – but overall the trip was really good.

I loved seeing glimpses of the adventurer that he used to be, and he was obviously making a concerted effort to participate fully.  Early in the trip he fell twice on a hike, cutting his face and scraping his hands, but he picked himself up and completed the 5 miles over rocky terrain and didn’t let it interfere with the rest of the journey.  I was really proud of him!

We made lots of memories (for me, even if he eventually loses them) and it felt a bit like old times…such a blessing.

We got home last weekend and had a good week at home, then I headed off to the Bay area for a two day reunion with long-time friends and former colleagues.  I was a bit nervous about leaving Don home alone, but he coped just fine and didn’t text/call me all the time with questions like I feared he would.  I think he forgot to cook/eat his vegetables one night, and he did call me when the gas went off and the stove wouldn’t light and I successfully talked him through how to reset our earthquake valve, but overall I was able to relax and focus on my time with my friends which was another real blessing.

I had him drive me to the airport for my trip.  It was the first time in a long time that I had ridden with him on a longish trip in traffic and I wanted to see how his driving skills are holding up.  He did really well, and I feel very comfortable having him continue to drive…yet another blessing.

Now we are back to trying to establish a routine and rhythm for our ordinary days and weeks at home, which has been a bit rockier.  He seems to not be trying as hard as he was during our trip or while I was away, and has reverted to deferring to/relying on me more than I think is really needed at this stage.   I have been impatient with that, and short-tempered with him.

I also have been too quick to conclude that a problem is due to his cognitive issues when in reality either I goofed or there is some other cause.  When he called me about the gas problem my first reaction was that he had forgotten how to turn on the stove, when in reality the earthquake valve had shut the gas off.  Yesterday we went to get our shingles vaccine and his insurance cards were missing from his wallet.  My first reaction was to blame him for removing them, when in fact I had forgotten to move them from the travel wallet he took to Alaska to his regular wallet.

It is proving really difficult for me to find the right balance between acknowledging and accepting the very real limitations imposed by Don’s cognitive disease and empowering (and sometimes nudging/pushing) him to do the many things that he is clearly capable of doing.   As a perfectionist I am also struggling to accept that he won’t always put things away in the right place, that his desk in our shared office will be always be messy (and that has nothing to do with cognitive impairment since it has always been that way!), that he will put on the “wrong” clothes for whatever activity or occasion we are heading to…and that the world won’t end if I just let those things go.

Today was particularly rough in both regards.  My awareness of what I need to do and how I need to change is growing, but knowing what you need to do and doing it are two different things!  As Don often says about himself, I am a “work in progress.”  I just hope that I make more progress than I did today.

 

 

 

Aging, Alzheimer's, Dementia, Mild Cognitive Impairment, Self Care, Stress and Anxiety, swimming

Roller Coaster

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!