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.

 

 

 

Forgiveness, Gratitude, Love, Reflections

Second chances

Despite my resolve to be more patient with Don, yesterday again started with me being rushed to get to work on time, and him being slow….and unfortunately we again fell into the spiral of my anger and his distress.  I left for work upset and agitated, and although we talked by phone and apologized to one another shortly after I got to work, it was not a good start to the day.

But it got worse.

I was eating lunch at my desk at work when my cell phone rang, and a friend’s name flashed on the screen.  This friend attends the same exercise class as Don, which would have ended just before she called me, so I had a feeling it wasn’t good news…and it wasn’t.

She told me that they were doing stretches on their mats at the end of class and when they all started to get up Don could not get up, and was weak and disoriented.  The health club called 911, and when my friend called me the paramedics were on their way.

I spoke with the club manager, and with the paramedics when they arrived, and they said they were taking Don to the emergency room.  I dashed out of work and drove to the hospital fearing that something dire had happened – like a stroke or a heart attack – and feeling immense guilt about my behavior in the morning.

 

At the ER I learned to my great relief that Don was still on a gurney waiting for a bed to be freed up, which indicated that whatever had happened was not life-threatening.  His exercise class instructor met me at the hospital, and when they let us back to briefly seem him we asked if he needed anything.  His response was “a whisky sour” so we knew he was probably alright.

Four hours later he got a bed in the E.R. where they did a chest x-ray, took his blood pressure and temperature (which was over 100), and swabbed his nose.  A couple of hours after that a young and very harried doctor stopped by to say the EKG, bloodwork, and other tests done in the ambulance were all normal and their best guess was flu.  A few minutes later that diagnosis was confirmed (despite the fact that we had both gotten the flu shot!) and we were sent home with a prescription for Tamiflu and a cough suppressant.

After a stop at the pharmacy and at our favorite ice cream place next door we were home, and by 7:30 Don was tucking into a plate of pasta.

Flu is nothing to take lightly, but the diagnosis was a huge relief.  For me the whole episode was also a warning that life’s apple cart can get overturned in a heartbeat and I won’t always have the chance to make amends when I get crosswise with someone.

The universe has been sending me all kinds of signs from blog posts to horoscopes that I need to change how I respond to Don’s lapses and yet I haven’t been able to change.  yesterday the universe decided to hit me over the head with a baseball bat. to get my attention.

I am lucky to have more chances to respond with love rather than anger…and I hope I don’t squander them, because the next sign from the universe might be the last.

 

Gratitude

Thanksgiving

Tomorrow is Thanksgiving, one of my favorite holidays.  I love the time with family, the fact that it is a secular rather than a religious holiday that all Americans are able to celebrate no matter our backgrounds or beliefs, I love the turkey and stuffing, and most of all I love the reminder to stop and reflect on all there is to be thankful for.

The past year has been a rough one in many respects – the challenging political environment, Don’s struggles to adjust to retirement and both of our struggles to adjust to the realities of his aging, the deaths of family members and friends…

But there is also so much to be grateful for.  Despite the age-related issues that Don faces overall our health is actually really good.  We love our home and our beach lifestyle.  We’ve enjoyed some fabulous trips, and good visits from and with family and friends.  While we are not fabulously wealthy, we are financially secure enough that we will be able to sustain our current lifestyle after I retire next year.  We have family that we love, and a wide network of friends.  In short, life is good.

Happy Thanksgiving to anyone reading this!

 

 

 

Forgiveness, Gratitude, Love, Reflections

Love Is An Act of Endless Forgiveness

Last week ended on a rough note as, after several really good weeks, Don and I found ourselves at odds and slipping into old behavior patterns.  The details aren’t important.  He did a couple of things that angered and upset me.  As I too often do, I let my anger become vitriolic which, as it usually does, made him shut down and withdraw.  In turn I got even more vitriolic in my efforts to break through, and he shut down even more.  A vicious cycle that has repeated itself throughout our marriage.

I’ve been working hard on not letting things go without getting angry, and on not letting my anger, no matter how justified I feel I am to be angry, turn to vitriol but last week was a major fail.

Friday night, after a tense day and evening, I came across these words in a novel that I was reading – “Love is an act of endless forgiveness.”  

Those words, which were incidental to the story, literally took my breath away.  They motivated me to get out of bed to go find Don and make amends, and they’ve been at the forefront of my mind ever since.

Today I googled the quote and learned that the phrase is part of a longer quote from Peter Ustinov, but to me it is those seven words that are so powerful.

As we head into the holidays, which are always a time of stress and anxiety for me and therefore a time when I am at risk of having my worst responses and behaviors come to the forefront, those words will become my mantra.  I need to remember them when I am about to get upset with Don about something that invariably won’t be that important anyway, and I need to remember them when I let myself get triggered and feel that I have let both myself and Don down.

This Thanksgiving week I am grateful that that a lesson I needed to learn found me just when I needed to learn it.

Love is an act of endless forgiveness.  Words to live by, for sure.

 

 

 

 

Gratitude, Reflections, travel

Gliding into vacation

Don and I are getting ready to head off on a long-awaited trip to Greece this afternoon, celebrating our 30th wedding anniversary and his 75th birthday.  After 30 years of marriage we know that the lead-up to a big trip can be a bit rocky as my obsession with checklists and detailed plans kicks into high gear and his anxieties flare up, but we have (mostly) learned to manage,  Once we are on our way our better selves (usually) reappear and we thrive on the adventure of seeing new places and the relief of being away from our day-to-day routines, responsibilities, and stresses.

This time the lead up to our trip has been different, and much more pleasant.  My sister and her husband arrived from Canada on Friday evening.  They’ll be using our home as their vacation home for most of the time that we are away, and we’ve enjoyed spending time with them this “overlap weekend.”

For the first time that I can remember I am heading off on a big trip almost totally relaxed.  Usually our guest room is packing central and the bed is covered with suitcases and clothes until right before departure, but this time I had to get everything packed up before our visitors arrived so I could stash the closed up bags in our home office.  While I did do a little bit of shifting things from bag to bag over the past couple of days, having everything pretty much packed and ready to go meant I could really relax in the lead up to the trip.

And a relaxing few days it has been!

Friday night we tried out a new, very good Mexican restaurant after picking my sister and brother-in-law up from the airport.  Saturday afternoon my sister and I enjoyed a spa day and massages at a local day spa thanks to the gift cards I had been accumulating for many months, while my brother-in-law and Don checked out a classic car show and then had massages at the franchise place where we are members.  Then we walked down to the ocean and saw an amazing sunset before a nice dinner at home.

Yesterday morning, and again this morning, it was beach time.  We live only 3 1/2 blocks from the ocean and we walk the dog along the Esplanade above the beach every weekday morning and once or twice a week in the evening for sunset, but we don’t get down to the beach itself anywhere near as often as I would like.  I am a water baby, and being in the ocean truly washes all of my cares away.

The past couple of days have been spectacular beach days.  The air is a warm, and the water is a cool but refreshing 67 degrees.  Mornings are my favorite time at the beach because the winds are calm, with no wind chop on the ocean and little of the accompanying kelp and murkiness.  There has also been no surf, so the water was crystal clear.

Swimming is my go to exercise – I love the feel of the water, the way my body stretches as I move, and the opportunity to let my mind wander without distractions.  I swim laps in the pool at our gym several times a week, but my true joy is swimming in the ocean.

So it was a real blessing to be able to swim out to the buoy both of the last two mornings, clearing my head and getting my heart pumping.  Both days I saw plenty of fish, and this morning I also saw a school of about two dozen stingrays gliding along beside me – just awesome!

So I head off for our trip relaxed and refreshed…and thinking that I need to plan a “glide path” like this before every trip.

 

Gratitude, Reflections, Therapy

Expectations…again

William Shakespeare wrote that “Expectation is the root of all heartache” – a lesson that I just can’t seem to learn.

Just two short weeks ago I wrote about expectations and gratitude, citing Ray Wylie Hubbard’s statement that “The days that I keep my gratitude higher than my expectations, I have really good days.”

Yesterday Don and I celebrated our 30th wedding anniversary, and I managed to keep my expectations way higher than my gratitude, making for a miserable day for both of us.

Following our therapist’s advice we’ve been working on understanding and acting on one another’s “love languages” based on The Five Love Languages by Gary Chapman.  An overly simplified explanation is that people differ in how we express and receive love, and that these differences can be broadly categorized into five “love languages”.   If someone expresses love to us in a way that does not align with our love language we might not even interpret the behavior as loving, leading to misunderstandings, confusion, and heartache.

My primary love language is “receiving gifts.”  To quote from the Five Love Languages website “If you speak this language, the perfect gift or gesture shows that you are known, you are cared for, and you are prized above whatever was sacrificed to bring the gift to you. A missed birthday, anniversary, or a hasty, thoughtless gift would be disastrous – so would the absence of everyday gestures. Gifts are visual representations of love and are treasured greatly.”

Don’s primary love languages are “acts of service” (which is pretty much what it sounds like – having someone do things that ease their burden of responsibilities) and “words of affirmation.  According to the website “If this is your love language, unsolicited compliments mean the world to you. Hearing the words, “I love you,” are important – hearing the reasons behind that love sends your spirits skyward. Insults can leave you shattered and are not easily forgotten. Kind, encouraging, and positive words are truly life-giving.”

The challenge for us comes with the understanding that, while “acts of service” are pretty important to me, “words of affirmation” is way down my list of preferences, while for Don “receiving gifts” is at the bottom of his list.  I have to make a conscious effort to remember to affirm him and his actions to reinforce that I love him, while he really struggles (and has throughout our marriage) with gift giving which has been the source of much tension and meltdowns throughout our marriage.

It doesn’t help that  because of childhood experiences with words that were never backed by action or real demonstrations of love, for me “words of affirmation” ring false and usually trigger anger and a profound sense of loss.  And I have my own theories about childhood traumas that make giving gifts so very hard for him…

We’d actually read The Five Love Languages a few years ago on our own and didn’t really follow through on applying the concepts, but have been making an effort to put the ideas into practice over the past couple of weeks as our therapist suggested in the hopes that we could move past the hurt and start to show each other the love we each feel in ways that are meaningful to the other person.

Which brings us to yesterday, our 30th wedding anniversary…

I’m not going to go into all of the gory details (we do have a personal life after all!) but suffice it to say that I had put some effort into picking out a card that really expressed my love in his “words of affirmation” love language, and included a small gift because that is my preferred way of expressing love.

I had left him a reminder about my preferred love language on his daily “honey do” list, and while I wasn’t expecting anything extravagant I was expecting a gift of some kind.  What I got was a “card” that he had printed on the computer with a single line of text saying he loved me.

I tried to say thank you but my disappointment was obvious, and when he noticed and realized that he had hurt me I dissolved into tears that turned into sobs.  He really can’t cope when I get upset, so he panics and shuts down…and that is what happened.  What I wanted was for him to try to make it right – to go out and buy a gift or take some other action that would let me know that he understood why I was hurt.  What I got was  verbal apologies and hand-wringing…but no action.

This was a huge trigger and the longer it went on the more hurt and upset I got, and the more upset I got the less capable he became of taking action…all because of my expectations that Don didn’t, and probably wasn’t able to, meet.

This is not a new dance for us…

Fortunately, we had scheduled an appointment for our therapist for yesterday afternoon, figuring our anniversary was as good a time as any to work on our relationship.  As we talked about what was happening I learned that Don had set out to buy me a gift, but got so anxious about finding just the right thing that he panicked and never made it out of the car.  While this gave me some empathy, it didn’t actually relieve the hurt and it meant a lot to me that our therapist acknowledged that feeling hurt was not an unreasonable response.  She also gave Don some ideas about managing his anxiety, and about gift giving…although between his emotional state and his mild cognitive impairment I don’t think he retained much of this.

After our session she (bless her) took her own time to go with Don to buy a gift for me while I went home.

The gift helped assuage some of the hurt, but unfortunately while I was home walking the dog I again built up expectations that this would be a turning point and that he would truly understand why I need him to “speak my love language” even though it is hard and not natural for him and even though his cognitive issues make it even harder.

We headed off to watch the sunset and have dinner, but I could not let go of those expectations and kept pressing him (drilling him, really) about my love language and what he could do to meet my needs and expectations.  Let’s just say the evening was full of tension and less than a success…again due to unrealistic expectations on my part.

I still wasn’t able to let go of these expectations this morning so I left for work on a sour note, but he actually came to my office and brought me a little gift, which went a long way towards making me feel heard, appreciated, and loved.  The fact remains, however,  that my expectations may have been understandable, but they were also unrealistic given our history (and our individual histories), how early we are on our therapy journey, and Don’s cognitive issues….and the result, as Shakespeare so wisely predicted all those centuries ago, was heartache.

As we move forward I am realizing that, fair or not, my ability to manage my expectations and my reactions to how those expectations are met is going to determine whether I/we are miserable or are able to navigate this journey through the next phases of our life with some semblance of grace.

The path ahead lies in finding ways to help Don give me the love I need in the way I crave it (and when he can’t, finding healthy ways to give it to myself), in giving him the love he deserves in his love languages, in making the investment in therapy even though it gives me budget anxiety, in carving out time to swim, meditate, and reflect, in staying connected with friends and maybe even being more honest with them about what is going on in our lives and, most of all, in keeping my gratitude higher than my expectations.  Given my personality I think it will be a pretty steep climb, but I’m lacing up my hiking boots and hoping I am ready to take it on.

 

 

Gratitude, Reflections

Expectations and Gratitude

“The days that I keep my gratitude higher than my expectations, I have really good days.” Ray Wylie Hubbard

This was posted on The Hammock Papers today and it literally took my breath away when I read it.

One of the things I struggle with most is my expectations – of how things should be, of what other people should do and how they should be, and of myself – and my reactions when those expectations aren’t met.

The self-inflicted hurt of unmet expectations has had a particularly corrosive affect on my marriage over many years, and this is at the top of my list of things to work on.

I’ve found a quote from Johanne Wolgang von Goethe to be particularly helpful in this quest – so much so that I write it in the front of every journal as I start a new one to remind me of its message:

“I have come to the frightening conclusions that I am the decisive element.  It is my personal approach that makes the climate.  It is my daily mood that makes the weather.  I possess tremendous power to make life miserable or joyous, I can be a tool of torture or an instrument of  inspiration.  I can humiliate or humor, hurt or heal.  In all situations it is my response that decides whether a crisis is escalated or de-escalated, and person is humanized or de-humanized.  If we treat people as they are, we make them worse.  If we treat people as they ought to be, we make them become what they are capable of becoming.”

This has proven true time and time again, and never more true than when I reflect on how I react when my expectations aren’t met.  When I react in hurt and anger, I escalate the situation and make myself and everyone else involved miserable.  In treating people as they are (at least as seen through the distorted filter of my expectations), I make them worse.

When Don does not meet my (almost always unreasonable) expectations I’ve been trying to develop a practice of taking a deep breath, putting things into context by asking myself if it will matter in five years (or even five weeks or days or minutes), and then reminding myself that whatever it is, he didn’t do it on purpose, and consciously thinking about all the things that I love and appreciate about him.  This helps we me see him as he is capable of being, and I can almost feel the pressure being lifted from both of us.

This sounds straightforward, but it is really hard to put into practice.  It’s even harder when I am tired, frazzled, and stressed, which pretty much describes my life these days…and harder still by the reality that sometimes what used to be reasonable expectations are no longer reasonable as Don ages.  Suffice it to say I fail more often than I succeed.

Thanks to Mr. Hubbard I have a new mantra.  When I start to get angry or hurt that something or someone hasn’t met my expectations I’m going try to remind myself to “keep my gratitude higher than my expectations.”  I’m pretty sure that if I can do that, we too will have some really good days ahead.