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!

 

 

Aging, Mild Cognitive Impairment, swimming, travel

Whales, dolphins…and angels

We just got back from a long weekend in Puerto Vallarta.  It had been more than 10 years since we were last there, and we had forgotten how much we like it.  This time we stayed a block from Los Muertos beach, walking distance from all of the city sights and in the thick of the action.  We loved the vibrancy, the color, watching the local families crowd the beach on what was for them a holiday weekend, and the food.  We ate lots of street tacos and several meals with our feet in the sand, drank far too many margaritas, took the water taxi to the little beach town of Yelapa, and saw some spectacular sunsets.

On Monday we took a 1/2 day whale watching trip with Wildlife Connection – a small, biologist-run outfit that takes people out in zodiacs so you can get really close to the whales.  It was a blast watching the humpbacks frolicking in Banderas Bay.  We got some amazing photos, but I think this is my favorite:

 

The next day we went out with Wildlife Connection again, this time to find dolphins with the hope of swimming with them in the wild.  One of the biologists studied a particular pod of dolphins for her Master’s thesis, and they became friendly with her and will often swim up to people.  We found the pod, and I volunteered to jump in first along with another man since Don did not want to go in.  A couple of dolphins swam right up to me and circled around, one of them so close it nearly brushed against me.  In just a few seconds they were gone, but the experience will stay with me for a lifetime.

It all happened so fast that it was hard to get a picture, but Don managed to capture it in the last second of a video he took with his iPhone, and I was able to extract this very blurry image from there.  That is me in the  back with a dolphin swimming right in front of me.

Image may contain: ocean, outdoor, water and nature

Unfortunately for the people who went in the water after me, the dolphins became more interested in surfing the wake and in teasing people by swimming towards them and then flashing past, so no one else got such an up close and personal experience.  I feel truly blessed.

I also feel blessed that Don and I got to spend such a fun time together, “making memories” as my grandmother always used to say.  These times together are becoming even more precious as we face his aging process and the cognitive challenges it has brought.

The trip could have ended badly as Don wandered out of the VIP Lounge at the airport and found himself on the wrong side of security without his passport or boarding pass.  He had left to go to the restroom, which he didn’t realize was inside the lounge, and then got disoriented and lost.  I started to worry when he didn’t return, and tried checking the restrooms both inside and out of the lounge.  One of the waiters in the lounge saw my distress and was about to go out and search with me when I got a call from Don on my cell phone and he told me where he was.  The waiter told me he would watch our stuff while I went and retrieved Don, and then when we returned was so solicitous, bringing us bottled water to take on the airplane, and checking every few minutes to make sure Don was ok.  I tried to find him to thank him when we left to catch our plane, but didn’t see him.  A few minutes later he came hurrying up the departure hall to say goodbye to us.  He was a lovely, kind man who went above and beyond to help us…an angel when I really needed one.

 

Aging, Mild Cognitive Impairment, Retirement

Feeling positive

Don saw a new neurologist today and although further tests have been ordered we both left feeling better about his/our situation.  The new doctor is a good listener and observer and less inclined to leap to a diagnosis than the one we saw last year.  He has ordered a DATscan, which tests for Parkinson’s disease, based on his observations of Don’s movements and our report of his physical and cognitive issues, but says he thinks it will likely be negative.  He acknowledged the role anxiety can play in all of Don’s symptoms, and reaffirmed the importance of exercise, good nutrition, sleep, activities that engage the brain, and social outlets to both mitigate cognitive issues and manage anxiety.

We’ll see him again in about 6 weeks.

My guess is that the DATscan results will lead to more assessments and tests to get to the root cause of the cognitive and physical/movement issues, which we both know are real if fairly minor and seemingly quite stable at this stage.  In the meantime it is good to know that we are doing the right things to manage them, and to know that we are in the hands of a thoughtful and caring doctor.

It is also good to know that we are on the right track in terms of diet and exercise, and in our efforts to find more social outlets for Don.  What we need to work on is having him engage in more brain-stimulating activities – hobbies, games, learning new skills.  The neurologist said things that Don already enjoys are best.  When I told him about the Beach Cities Health District’s Memory Club he said that might be helpful, but not to do anything that requires spending money on special activities or equipment.

After the neurologist’s appointment I went with Don to his weekly restorative yoga class – definitely challenging for both brain and body and something I plan to work into my retirement schedule – and then we had lunch together before I went back to work.

All in all a good day, and one that has left us both feeling more optimistic about what at least the near future might hold.

 

 

 

Aging, Change, Grief, Letting Go, Love

Letting go of expectations

After a holiday break that was both restful and productive I have had a tough re-entry to work…but it is not the job itself that has been tough.  The holiday lull in professional activity has lingered longer than usual, there aren’t any big issues to be dealt with, and overall things are running really smoothly…and yet I’ve been stressed and out of sorts.

Some of it is just that I really am ready to move on to the next phase of my life, so being at work feels a bit like wearing clothes that don’t quite fit any more.

A bigger part is that I am feeling really torn between work and my responsibilities at home.  Don’s overall health and attitude have been good, but there is no denying that he has mild cognitive impairment and memory loss and that is shifting more responsibility to me.  I’ve always managed our finances, and done pretty much all of the planning activities (from meal planning to travel planning to retirement planning) since that has never been a strength.  He has done a lot of the cleaning, yard chores, and meal cleanup and he still does help with those things, but now I make a weekly and daily schedule and daily to do lists, remind him where he is supposed to be and when he is supposed to be there, follow up on tasks to make sure they have been done and respond to multiple texts and calls each day when he needs has lost something and needs me to talk him through retracing his steps to find it, needs technical help with his devices, or just wants reassurances.  I also find myself redoing things he has done, putting things away that he has left out, hunting down things he has put in the wrong place, and answering the same question multiple times…not to mention being constantly interrupted.  It can be frustrating and exhausting.

I also find that increasingly, doing the things that I need to maintain my sanity (swimming, learning all I can about memory disorders and dementia so that I can prepare myself for what the future might hold, spending time alone, journalling, blogging, counselling) and even doing the things I need to maintain our household (grocery shopping, managing our finances, contacting tradespeople about home maintenance, going with Don to doctor’s appointments) are carved out of work time…and that makes me feel guilty and resentful on top of tired and exhausted.

This morning I snapped.  We woke up to the sound of rain which meant we wouldn’t be able to take our usual 3 mile walk before breakfast, and I know that without that early morning exercise my whole day is usually off kilter.  I decided that instead of a long walk I would go to the gym on my way to work.  I told Don this and asked him to cut up our morning fruit and get the breakfast stuff out while I walked the dog around the block  so that I could grab breakfast and get going.  When I got back he was sitting on the john looking at his phone, and nothing had been prepared for breakfast except two eggs were sitting on the counter.

The trigger of Don’s slowness in preparing breakfast seems so insignificant, and yet it meant I would either have to leave without eating, or skip the morning workout because there was no way I could incur even a 15 minute delay and make it to work on time.

I flipped out, and then we were into our usual vicious cycle.  Don got flustered in the face of my anger, which made him even slower and more disorganized, and when I asked him to just go in the other room so I could cool down while cooking and eating breakfast he would not leave me alone but kept coming back to try to apologize or do things in the kitchen which just made me angrier, and my anger was exacerbated by his apparent refusal to listen to what I was asking of him.

In the end I left angry and upset, with myself as much as with him.  I was cranky all morning and knew I needed to do something to work out my stress, so I made plans to leave work after a lunchtime meeting so I could have a long swim, and then have some time to myself by working in a coffee shop for a couple of hours.  It was the right plan to make given my mental and emotional state and the lack of anything that really required my attention at work, and yet I feel guilty because it is another afternoon when I am not in the office and available for face time with my staff.

I also feel guilty for how I reacted to Don.  No matter how many times I tell myself that he can’t help that he has some kind of (as yet undiagnosed) brain disease and that I need to be understanding and patient and respond with love not anger, I still get triggered way too often.

I’ve been thinking a lot about why this is.  I’ve also been thinking about a question our therapist asked me last week when I got teary when talking about the weight of my responsibilities, which the more I think about it the more I realize is related to why I get triggered by Don’s lapses.  The question that got me thinking was whether the weight of my responsibilities is really any different than if I were single and living on my own.

The short but superficial answer is no, it isn’t much different.  If I were single I would be doing all of the financial management, cooking, cleaning, and household chores.

But the longer, more truthful answer is… I think it is a lot different.  If I were single I would only have myself to worry about and be responsible for.  I wouldn’t worry about getting a nourishing and balanced meal on the table every night and could just eat an egg on toast if I felt like it.  I wouldn’t be responsible for helping plan someone else’s days or weeks, for making schedules and to do lists for someone else, for scheduling medical appointments for someone else and then having to find time to go with them and to follow up afterwards.  I wouldn’t feel guilty for needing time to myself.  So yeah, it’s different and yeah, I often feel that it is unfair that I have to do so much more, which makes me both sad and sometimes angry.

The other reason thinking about all of the responsibilities I am shouldering makes me sad, and sometimes angry, comes down to that old bugaboo – expectations.  I got married because I wanted a partner.  Someone who would share the responsibilities of daily living, who would lift me up when I needed it as I would do for him, who would be my co-adventurer, who would participate in planning our lives and our adventures.

The reality has been somewhat different.  I love Don dearly, and he has been my co-adventurer and partner in fun and my best friend for over 30 years, but he has never really been an equal partner in planning and managing our lives.  His inability to meet my expectations in this area has a source of tension throughout our marriage…and secretly, I kept hoping that if I just nagged and noodged him enough, he would change.

 

I’ve always known in my head that trying to change someone else is a fool’s errand, but my heart kept hoping and I kept trying.  His cognitive impairment has made absolutely clear what my head has always known.  Not only is he not going to miraculously become a planner and organizer, he is almost certainly going to get worse in this area.

When I get sad about this it is because I am mourning the loss of a vision of life that only ever really existed in my head.  I need to let myself mourn…but I also need to remember that the life we do have and will have is pretty darned good.  Don is still able to travel and we have several trips on the horizon.  We live in a beautiful place, so when travel becomes too difficult we will enjoy our home, the beach and ocean, the ability be outside all year.  We have friends and family that will stand by us even when things get tough.  We still laugh together.  We still like spending time together.  We still desire each other.  As our therapist keeps telling us, it is obvious that we have a deep love for each other. We are blessed in so many ways, and these blessings will not disappear no matter what the future brings.

I think I am ready to start letting go of my expectations of what my life should be like.  What I need to work on is accepting the life I have and not letting Don’s every lapse trigger my hurt and anger.  I can’t have another morning like this morning…and the ball is in my court.

 

 

Aging, Grief, Reflections

Life Itself Is Grace

It has been a season of losses for me at work and personally as each month has brought news of the death of a family member or a member of my library/work family.

August was marked by the memorial service for my Aunt Lydia, who died in May.  September saw the death of a former Library Trustee.  In October we lost my cousin as well as a longtime library volunteer.  The month before that a former Library Trustee.  .

This past weekend we lost one of our long-time library volunteers, someone who celebrated her 80th birthday in August but was still vibrant, engaged, and working at a part-time job that she loved until felled by illness just a few short weeks ago.   Someone I considered a friend.

None of these people have been “young” and in that sense their deaths are simply part of life, but the steady drumbeat of loss after loss has been hard.  It’s also made me more aware of impending losses as I witness the aging and/or illnesses of family members and friends, and recognize the losses (of relationships, community and professional stature, and of the structure that has governed my days) that will come with my retirement next year.

Against the backdrop of so much loss I have been working on living more in the present and less in the future, and on letting go of my perfectionism and need for order in favor of accepting the people and situations in my life with love and gratitude even when they do not meet my “standards.”  It is a journey for sure, and some days I am more successful than others.

A couple of weeks ago Michael Wade posted the following quote from Frederik Buechner on his Execupundit blog, and the final sentence has lived with me since I read it –

If I were called upon to state in a few words the essence of everything I was trying to say as a novelist and as a preacher, it would be something like this: Listen to your life. See it for the fathomless mystery that it is. In the boredom and pain of it no less than in the excitement and gladness: touch, taste, smell your way to the holy and hidden heart of it because in the last analysis all moments are key moments, and life itself is grace.

“…in the last analysis all moments are key moments, and life itself is grace.”  

I am holding these words close as I reflect on the lives that have been lost, and the losses that are certain to come.

Aging, Letting Go, Reflections

Learning to let go of control

I am a planner and a list-maker.

I set goals (annual, monthly, and daily), and have created spreadsheets with detailed retirement plans and budgets based on multiple scenarios, and multi-year home maintenance and improvement plans.  Each month I create a master meal plan, which is refined into a weekly plan as the month unfolds.

I also use a web-based tool (ToodleDo) for my master “to do” list.  It synchronizes my master list across all of my computers and devices, allows me to forward emails to it for conversion into tasks,  allows me to create recurring tasks of varying frequencies, and averages between 90 and 100 items at any point in time.

This master to do list is supplemented by a multitude of other lists, among them weekly shopping lists, a daily task list at work, a pre-trip planning checklist that I store on my computer and update each time I travel, a holiday gift list to track what I’ve bought and spent on Christmas gifts each year, and a daily “honey do” list for Don.

The Notes app on my iPad and iPhone contain lists of meal and menu ideas, and of books I want to read and movies/tv shows I want to watch.

My “bullet journal” has lists of books I’ve read and movies I’ve watched, blog post ideas, projects I want to complete, activities I want to pursue in retirement, places I want to visit, my “bucket list,” and a “habit tracker” where I record progress on fitness and other goals.

I sometimes half-joke that my devotion to plans and lists is a sickness, and according to this article there may be some truth to that!

I get great pleasure out of seeing goals achieved, plans executed, and items checked off a list, and the more stressful, chaotic, and busy my life and the world get the more I cling to my plans and lists – almost as if they are a security blanket.

Don, on the other hand is (as our therapist has noted!), a live in the moment, go with the flow kind of guy.  He is certainly capable of making a plan when pushed to do so, but he does need to be pushed and he does find it a struggle.  He’s made various attempts at mastering to do lists over the years, from carrying a small notebook that he labelled “Don’s Brain” to apps on his phone, but hasn’t been able to stick with any of them.

More than not being able to stick with them, he actually seems to think that if he needs to rely on lists and reminders there is something wrong with him.  Since he retired, and in light of his short-term memory issues, I create a weekly schedule and daily “honey do” lists that we leave on the counter that serves as the central hub of our house.  He has been really good about reviewing them every day, doing what they say, and checking things off as they are completed and has even come to rely on them…but when he tells others about this reliance it’s almost as if this is something to be ashamed of.

One consequence of this fundamental difference in our make ups is that over the years (as you can see above)  I have assumed pretty much all of the “planning” duties from financial and retirement planning to vacation planning to smaller things like making dinner reservations.  Mostly I’m fine with this because it also feeds my need for control, but I also feel the weight of responsibility and it gets very tiring sometimes.

Not surprisingly, this has been a source of tension throughout our marriage.

Given his stage of life and his cognitive challenges, and the insights I am gaining from therapy, I am realizing that any hope I might have had that he would take on some of the planning work is both unrealistic and unfair to him.

I’m also realizing the extent to which all of my planning and lists are really a manifestation of my need for control, and that this could be a real problem as we ride the waves of change that aging and health/cognitive issues are bringing to our shore.

If I am going to survive the coming months and years, I need to learn how to loosen up on the reins.  If I don’t I can see that I will make life miserable for myself, and for Don too.  I need to find the balance between planning and preparing for the future and making sure that everything that is essential to the smooth functioning of our lives gets taken care of, and going with the flow of what is happening in the moment even when it is something different from what I planned for.

Wish me luck….I suspect that this might be one of the biggest challenges the future holds for me.

 

 

 

Aging, Reflections

Perspectives

We returned Tuesday evening from a short trip to Vancouver Island for our niece’s wedding.  The outdoor wedding was lovely if a bit chilly, we really like our new nephew-in-law, and we got to spend quality time with family, including extended family members that we rarely see…all in one of the world’s most beautiful places.

For me the trip was also a bit of a wake up call, starting with my airplane reading on the flight from LA to Seattle – a book called Keeping Love Alive as Memories Fade.  Our therapist recommended that we revisit the ideas in a book called The Five Love Languages by Gary Chapman, which  has really helped me understand some long-standing dynamics in our relationship, so I was excited to see a book that applies the love languages concept to relationships where one person suffers from cognitive impairment.

I was glad I read Keeping Love Alive, and am sure I will go back and re-read it more than once, but it was also a sobering look at the reality we face if Don’s currently mild cognitive impairment progresses.  It contains some beautiful stories about couples facing this challenge, and more than once I had to turn away from Don to hide the tears streaming down my cheeks.  I read the entire book in one gulp on the 2 1/2 hour plane trip, and by the time I finished I was both scared and hopeful about what the future might hold.  Scared because I had an insight of this future from the perspectives of what the book calls  “care partners” (as opposed to care givers), and hopeful because I could see how love persists even in this most difficult and challenging situation.

With all of this fresh in my mind I was given another dose of reality and another perspective when, without them saying a word, it became obvious that family members were seeing more of a decline in Don’s abilities than I have been seeing.  Nobody said anything directly, but there were veiled comments to me, and a solicitousness towards Don and towards me that was a new, even from family members that we had spent time with just last Christmas.

I am with Don every day, and I think that in that circumstance you adjust incrementally to incremental changes and don’t have a good sense of the cumulative effect where someone who only sees a person once in a while can see the changes much more clearly.  I had a similar experience when we visited our family in New Jersey in June and our niece commented on how much I now do for Don  – which is true, but something that has happened gradually and over a long period of time with the result that I have not really been aware of how much of the burden of managing our daily lives I have come to shoulder.  From this perspective, I think the “decline” our family sees when they are with Don only once or twice a year is accurate because they have a different benchmark than I do.

At the same time, because I am with Don every day I think I also see more of what he is still capable of  – things that people who only see him once or twice a year do not see – and it is a lot.  He is still a capable driver, participates in and enjoys his exercise classes at the gym, socializes with our friends, does all of the daily housecleaning and most of the laundry, cleans up after our meals, gets dinner started many evenings, participates in social media, programs the DVR to record his hockey games, remembers to take his medications….pretty much everything that goes into normal living.

I also think that he is “better” at home with our daily routines and familiar surroundings, and without the stress and drama that being with family brings…especially family that is as loud, opinionated, and intense as mine can be.  Even people with no cognitive or other issues who didn’t grow up in that environment get that “deer in the headlights” look when our family gets going, and Don’s hearing impairment doesn’t help the situation.

The end of our trip was marked by the Route 91 mass shooting.  One of my key staff members was at the concert and narrowly escaped with her life, bringing this tragedy very close to home.  She is safe, but the whole situation reminded me that to a large extent life is a crap shoot.  It’s hard to feel sorry for yourself because your partner is demonstrating the frailty of aging when you see so many beautiful lives cut short, and so many people wounded both physically and emotionally, by a random act of violence.

The reality of Don’s condition is probably somewhere between what our family seemed to see and what I experience every day – it doesn’t really matter.  What matters is that we are both still here, still loving each other even after 30 years of marriage, and still able to enjoy doing many things together.

It’s all a matter of perspective.