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!

 

 

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!

 

 

 

 

Mild Cognitive Impairment, Retirement, Stress and Anxiety, travel

R&R

It’s been weeks since I’ve posted, mostly because life has been crazy busy. Even though the demands of my job are diminishing as I head towards retirement, hand over more to staff, and back away from job-related community and professional commitments, I feel like I am constantly juggling work, medical appointments (mostly Don’s), everything that goes into managing our household, and making time for exercise and time with friends….always feeling like something is about to come crashing down

I hadn’t realized how much it all has been wearing on me, and how my weariness and stress have been affecting Don, until the past 10 days, which we have spent in Hawaii. The first week we were at our favorite beachside resort on the Big Island with absolutely nothing on the agenda. We slept in every day, lounged on the beach and swam in the ocean every morning, had siestas every afternoon, made love, and spent time each evening on the lanai of our room listening to the waves. Apart from one day when we drove around the island, and a couple of evenings listening to a favorite slack key artist, we didn’t stir from the resort.

The last few days we’ve been in Honolulu, and while it hasn’t been quite as restful we enjoyed a drive up to the North Shore, caught up with good friends, and enjoyed sunset mai tais and some great Hawaiian music each evening.

Most importantly, we just enjoyed each other’s company. We laughed a lot, and had more, and more meaningful, conversations than we’ve had in a long time.

It wasn’t all nirvana as I did check work email, and one of our cars also died just before we left, so I did spend some time researching replacements and communicating with dealers, but it was the longest stretch of unstructured time that we have had in years. Even our vacations in recent years have been of the adventure travel or sightseeing in new places variety…restorative in their own way, but not deeply restful like this trip has been.

I could see the positive effects in both of us. I was not stress eating, and despite the general lack of exercise and the mai tais I think I actually lost a couple of pounds. Don’s cognitive issues and me pry glitches didn’t disappear, but we both were more able to take them in stride without getting anxious or upset, and as a result some things actually were better.

By the end of the trip he was reading a real book after quite a long period where he has had trouble focusing on longer written pieces. He was able to navigate his way to and from restrooms in airports and restaurants without getting disoriented the way he had on other recent trips…and when he did get a little turned around he was able to stop, not panic, and reorient himself. He drove the cars we rented, and although he was a little nervous and commented that it felt different he did just fine. We just finished a game of Ipad Scrabble on the plane trip home, our first in a year or more, and he was noticeably more patient, used more complex words and configurations, and didn’t get “stuck” the way he did the last time we played.

While we obviously can’t be on permanent vacation, and even after I retire we will have exercise classes, doctor’s appointments, and social commitments on our calendar I think being free of the 40+ hours that my job consumes in a good week (and not infrequently 50-60 hours or more), not to mention being free of the work stress, is going to make a huge difference in our relationship and well-being.

I’m also going to make sure we have plenty of unstructured time…weekly “sabbath” days, short get aways where we just chill, and at least one long beach vacation to Hawaii or somewhere similar each year.

Now we just need to get through the next seven weeks until I retire – weeks that are already filled with appointments, retirement parties, and extended visits from family…

Stress and Anxiety

This says it all…

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My world has been more chaotic than usual for a variety of reasons – a seemingly minor kitchen repair that has spiraled into a mini-remodel, too much to get done and too little time to do it, unexpected schedule changes, and trying to get ready for an upcoming vacation that will be really fun when we actually get there but puts a lot of extra stuff on my already over-full plate – and my control-freak tendencies are in overdrive as a result.

Adding to the challenge is a spouse whose anxiety manifests itself in disorganization, jumping from unfinished task to unfinished task, and difficulty paying attention.  It is a bad combination!

Fortunately I am managing to carve out time to swim, but its been a tough week….