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, Change, Mild Cognitive Impairment, Reflections, Retirement, Uncategorized

Finding Our Rhythm

After a little more than 3 weeks of retirement I can feel myself starting to relax a bit.  I think about work a lot less than I thought I would, although I’m still waking up too early most mornings.  I still have lots of things on my “to do” list, but most are not time-critical and it is a good feeling to know that if I don’t get something done today there is always tomorrow.

It’s also been nice to do more things with Don – going out to breakfast or lunch, going to the gym or the beach, or just running errands – but at the same time we are still struggling to adjust to our new life and to find a schedule and a rhythm for our days and weeks.

When I was working Don managed to fill his days on his own initiative, or at least if he was just sitting around I didn’t know about it. I used to leave him with a to do list each day, and I still create a daily “honey do” list, but it is skimpier now that I am home and able to help with some of the chores so he is even more at loose ends.

I have exercise classes, dates to meet friends for coffee or lunch, and some volunteer activities that take me out of the house and plenty of projects I want to work on when I am at home, but he is struggling to figure out things to do while I am busy with “my stuff.”  He has a couple of weekly exercise classes and a couple of monthly activities of his own, and we do some exercise classes and meetings together, but he still has much more unstructured time than I do and looks to me to help him fill his days.  This translates to a lot more togetherness than I am used to!

My retired friends tell me that it took them up to a year to settle into a routine and schedule that worked for them, and may of them do not have partners, or their partners they don’t have the complication of Don’s short term memory and cognitive issues, which have made it harder for him to find activities that he enjoys.  One friend who retired a couple of years ago but whose husband retired just a few weeks before I did tells me that they too are finding it a bit challenging to deal with all of the togetherness and to settle into a new routine, and her husband has a much more robust circle of guy-friends and activities/hobbies than Don does.

I guess I should not be surprised that we are struggling with these issues after only a few weeks, but for my own sanity I need to find a schedule that gives us a better balance of structured activity and down time, of time together and time apart. We need a rhythm to guide our days and weeks, and I need the grace to accept that this season of our lives will be one of more togetherness than I am used to and the awareness to treasure the time together knowing that it will someday end.

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Acceptance, Family, Mild Cognitive Impairment, Retirement, swimming

Swimming

I am a swimmer.  I’ve never been on a swim team, had my last swimming lesson when I was 12, my stroke is far from perfect and even my fastest pace is slow….but starting when I was in grad school, and continuing with only short breaks due to injury or lack of pool access, I have shown up several times a week and swum laps.

Swimming is my exercise of choice, but more than that it is what keeps me sane when my world is going crazy.  Counting laps is my mantra, and the rhythm of my breath is my meditation.  As Krista O’Reilly-Davi-Digui wrote in this blog post, 

“In the pool, I let go of all my responsibilities and inner chatter and focus on my breath and the way my body tilts gently with each stroke.”   When I emerge from the water, my body is tired, but my soul is revitalized.

Lately my life feels even more turbulent than usual.  My last few weeks at work before retirement are busy as I wind down or hand over tasks and projects, there are too many retirement events for an introvert like me, and we are partway through a month of non-stop house guests…family members that we love, but who bring long-standing triggers and dramas.

Most of this will die down once I retire, but I will still be faced with the roller-coaster ride of Don’s cognitive issues and the uncertainty, stress, anxiety, and fear that we both are feeling.

I will swim my way through.

To borrow again from Krista O’Reilly-Davi-Digui, swimming “is one more invitation, on this life journey, to step into small, imperfect action.  I am reminded that I am the type of person who moves through fear and anxiety, and does hard things, who seeks freedom and does not quit.”

I have a feeling that the coming months and years will test me in ways that I never wanted to be tested, but I will swim my way through the fear and anxiety and I will not quit.

 

Acceptance, Change, Mild Cognitive Impairment, Retirement, Stress and Anxiety

Downshifting

It’s been a bit of a rough re-entry after our wonderful vacation.  Work stresses and the stress of having to the unplanned purchase of a new car just weeks before I retire have put me on edge, and my schedule is still way too packed so I feel like I am rushing from commitment to commitment without any breathing space.

I know that when I am stressed and rushing, Don gets anxious, and that kicks off a vicious cycle where his anxiety makes his memory and cognitive issues worse, which slows him down, which makes me more stressed and more likely to snap at him, which makes him more anxious, which makes the cognitive issues worse…and then we both end up feeling badly – him because he feels like he is letting me down, and me because I get upset and short-tempered.

We’ve been in that cycle too many times in the past week.

Yesterday we had “Memory Club” – a great 7 week program for people experiencing early-stage short term memory loss and their care partners.  Each week we hear from an expert on some aspect of cognitive impairment/dementia and how to manage it, and then we split up so the people experiencing memory and cognitive issues have time together facilitated by a social worker, and the care partners have time together with a psychologist.  It has been really helpful to have a community of people experiencing similar challenges, and the psychologist’s insights have been particularly helpful to me.

Yesterday when the care partners met, the psychologist talked about the difficulty that care partners have in “downshifting” as they move into the care partner role. He said we are used to driving along at 70 miles per hour on a relatively open highway, where we have known where we are going and the milestones and landmarks are familiar.  Now we need to go onto a road that is unfamiliar, where the destination is unknown, and that is marked by twists and hairpin turns and if we and our loved ones are to navigate this road successfully, we need to learn to downshift.

That concept really spoke to me, as I think it is at the heart of what I have been struggling with lately.  It is obvious that when I don’t downshift by building more space into our schedule so that we can match the pace of our activities to Don’s pace and abilities the wheels start to fall off…and yet I am finding it really difficult to do.  It’s also obvious that I need to downshift for my own well-being, not just Don’s.

I think we will probably struggle with this for the next six weeks until my retirement as I deal with some stressful issues at work, we have family visitors staying with us for all but a couple of days of the next month (we love them all, but they can be high maintenance!), there is a string of retirement events for me (stressful in their own right!), and we still have to fit in medical appointments, Memory Club, sessions with our counselor, exercise, and important time with friends.

Once I retire I will feel more able to take my foot off the gas and downshift, but I suspect that it won’t be that easy for someone with my driven personality to make this shift after nearly 40 years of a fast-paced, intense, and fully scheduled life, and I expect a steep learning curve.  Wish me luck!

 

 

 

 

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.