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.

 

 

 

Acceptance, Expectations, Letting Go, Reflections

There isn’t a way things should be…

“There isn’t a way things should be. There’s just what happens, and what we do.” Terry Pratchett

Terry Pratchett was a best-selling English author who died in 2015 of early-onset Alzheimer’s, so he knew first hand about the futility of thinking that things “should” be a certain way…but it is a lesson that I am still struggling with.

Yesterday’s Valentine’s celebrations, or in our case lack thereof, demonstrated that despite lesson after lesson, I have yet to learn the futility of having unrealistic expectations that my life will somehow mimic a Hallmark commercial.

After 30 years of marriage I know full well that celebrations like Valentine’s Day have never been my husband’s strong suit, and his recent cognitive challenges have only made things harder for him in this regard as for so much else.  I also know that, despite the Hallmark commercials  and the abundance of Facebook posts and Instagram photos showcasing Valentines celebrations, there isn’t a way Valentines “should be”  and that sometimes just being together is enough.

I tried hard to remember all of this yesterday, and to focus on all of the good things in my life and my marriage, but I couldn’t shake a nagging feeling of disappointment, resentment, and sadness that the holiday didn’t live up to my hopes and expectations.  It is true that there were things that Don did, and didn’t do, regarding the holiday that I was rightly sad about,  but it is also true that how I reacted that colored what could have been a nice, low-key, day of togetherness even if there weren’t hearts and flowers and Hallmark cards.

It feels as if over the past couple of years the universe has been trying to teach me what Terry Pratchett said so clearly.   I know that if I don’t learn to give up my expectations  of how things “should” be, the coming years will be so much harder than they need to be, and yet I stumble time and time again.  Yesterday was no exception.

The process is painful, but each time this happens it feels as if there is another crack in the hard shell of my expectations, opening me to greater acceptance of the reality of whatever situation I am in and a more compassionate, grounded, and accepting response.