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!

 

 

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.

.

 

 

 

Mild Cognitive Impairment, Reflections, Retirement

Retired…and ready to blog again?

When I started this blog I was full of good intentions about writing once or twice a week, but I quickly discovered that absent a strong theme for the blog it was really challenging to find topics to write about…at least ones that didn’t sound too much like my personal diary.

A few weeks ago I decided to take a break from blogging, with the idea that I would re-start once I retired in late June and my life settled down.

The past few weeks have been really intense. There were three weeks of extended visits from family, some of whom are pretty high maintenance, and a whole series of retirement parties and events.  It was gratifying to have my contributions to the library and community celebrated, but also stressful as I really don’t like being the center of attention, and just the social aspect is hard for an introvert like me.

I was also busy wrapping things up at work, and making sure everything was in place for my successor.

Leaving work also turned out to be more stressful and emotionally draining than I had anticipated.  I was ready on so many levels, but actually saying farewell to so many people that I care about was hard.

The stress of those last work weeks carried over to home, and in a familiar pattern the more stressed I was the less patient I was with Don, and the less patient I was with him the more anxious he got and the worse his cognitive issues, requiring more patience from me just when my well was depleted.

And then I went from a tearful last day at work to a party that Don and I threw for 50 of our friends the next day…fun, but it required a lot of planning and work.

Then we went on a trip to the East Coast just three days later, and while we were looking forward to it the run up to a trip has never been a good time in our marriage.  I get obsessive and stressed about getting everything ready, which makes me short-tempered and impatient, and poor Don just tries to stay out of the way, which makes me resentful that I am the once doing all of the work…and then the familiar vicious cycle described above kicks in.  It is not pretty.

The trip was worth it though, as we spent a fun couple of days sightseeing in Philadelphia, then a few days with family in New Jersey.  It was good to spend time with people we love but only get to see once a year or so, but also not easy as several are facing significant health, mental health, or other personal challenges.

We just got home last night, and between the trip and today’s 4th of July holiday it really hasn’t sunk in that I am actually retired.

It is already clear that my days and weeks will not be empty.  There are exercise classes that I want to attend several days each week, a 2x/month care partner support group that I think will be really helpful for me as we continue to face Don’s cognitive issues, our monthly “Memory Club” meeting, my women’s discussion group, social activities with friends – both solo and as a couple, my volunteer work with the Walk to End Alzheimer’s, and medical appointments.  Plus we have trips scheduled every few weeks for the rest of the year, and a full month of family visitors in September/October.  I’m beginning to see why my retired friends wonder how they ever had time to work!

That said, I do want to resume blogging and I think there are a couple of topics that will give me plenty of material and while they are intensely personal, I think they might also be of interest to others.

The first topic is the realities of retirement.  I have spent decades planning for this time of my life, but now that it is here I am realizing the truth of Dwight D. Eisenhower’s statement  “In preparing for battle I have always found that plans are useless, but planning is indispensable.”   Even less than two weeks into this new phase of my life I am learning that the reality is different than what I had planned and envisioned, and that one of my personal challenges will be to let go of control and just ride the waves as they come.  I am sure I will have more to write about this as the days and weeks unfold.

The second topic is the cognitive issues that Don is experiencing, and how they affect both of us, our relationship, and our retirement plans.  We still don’t have a diagnosis, but the issues are real.  Some days they seem to be worse, some days better and riding that roller coaster is challenging in and of itself.  I have been reading a lot about cognitive impairment and brain health, about caring for someone with Alzheimer’s or other brain diseases, and books by other women whose partner’s have experienced these issues.  I plan to share what I am learning, how we are trying to manage Don’s symptoms with diet, exercise, supplements, and other strategies, and (something that has been particularly helpful and meaningful to me), our personal story of living with these issues while trying to maintain our relationship as a couple.

One of the lessons I am learning now that I am retired is to let go of expectations of what I “should” be doing and let myself do what my body, soul, or relationship tell me I need to do in any moment.  When it comes to blogging that means that I am not going to set myself an expectation of how often I will write.  My guess is that some weeks I will post several times, and sometimes weeks will go by without a post.  Some posts will be short and sweet – a photo, or a quote that I come across and find meaningful – and some will be longer and more reflective.

And I am not going to worry about whether anyone else reads what I write.  This is my journey, and this blog is my way of processing what I experience along the road.  If you find me and want to come along, welcome…but if no one but me ever reads it that is fine too!

 

 

 

 

 

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!

 

 

 

 

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…