COVID-19 And Living With Alzheimer’s; Unprecedented X2

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Living With Alzheimer’s During COVID-19

Do these phrases make you think of the pandemic?

While they are oft-used descriptions of the pandemic, they also describe normal aspects of daily life for those living with Alzheimer’s, like my parents. Dad has advancing Alzheimer’s and is doing everything he possibly can to stay active, social, and positive. Mom is our resident wonderwoman in her roles as his wife, friend, and caregiver. Their vibrant marriage of 60+ years makes them a good team to navigate advancing Alzheimer’s during a pandemic.

Uncertainty and Unknowns

Alzheimer’s brings a great deal of uncertainty and unknowns. You don’t know how quickly the disease will progress or when another change or unprecedented situation might pop up. As the disease advances, social interactions become more difficult or awkward and a subtle form of self-quarantine might enter the equation, whether it was intended or not.

While there are stages of Alzheimer’s, there isn’t really a “one size fits all” timeline for what to expect. Nor is there a formula for how to deal with the possible varieties of experiences each person may face in their journey with Alzheimer’s. In fact, it is said;

“when you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s.”

Before the pandemic, my parents had a nice routine of family and friends coming and going for activities, social visits, respite, and support. When the shelter-in-place started in MN, their rhythm of seeing people and going places all changed very quickly. No more water exercise at the Y, no walks at the mall, no great-grandchildren sports or concerts to watch, no luncheons with friends, no family birthday parties, respite programs closed, and even their medical appts were canceled.

Unprecedented X2

My parents were already dealing with one type of “unprecedented” lifestyle with dad’s advancing Alzheimer’s. When the pandemic entered the equation, now they have unprecedented X2.

When Covid-19 started showing up in the news, we were a few months into a sailing trip in FL. As the pandemic intensified, we discussed our options and decided to end this trip early. From our years of sailing, we’re are used to switching to plan “B”. We turned our bow around, sailed back to our boatyard, packed everything up, and drove home to MN.

Plan B

The new plan was to stay with my parents to be available to help in whatever ways we could during the shelter-at-home and other pandemic restrictions. After all, even Wonderwoman (mom as caregiver) needs a break now and then.

How do you prepare for the unexpected when the unprecedented appears at almost every turn?

Our Motto’s For Unprecedented Times

In our day to day interactions with my parents, we see motto’s like these in action. We are blessed to join in and “enjoy the ride”. Whether there’s a random change in dad’s food preference or a sudden inability to perform a routine daily task, mom is a master of being flexible and patient. For example, one day he might enjoy eating spaghetti and meatballs, yet the next time he might push it away with “yuk, I don’t like this!”. “How about a piece of toast?” is one of her typical calm replies while removing the plate of spaghetti.

We learned fairly quickly not to vary the walking route to the mailbox lockers. What we deemed as too repetitive was an important part of his daily routine. If it isn’t a problem for him to take that same trek five to ten times a day (even if the mail was there on the first trip there or if it is a Sunday), why should it bother us? To the mailbox lockers and back brings him a sense of purpose and a source of happiness so we take turns getting the mail again and again.

Inhibitions?

We try to not worry about the neighbors who probably wonder why we’re always walking the same stretch of sidewalk, stopping to balance on a cut-down tree stump en route, doing a little jig now and then, or singing a tune on our way to get the mail. Dad has lost many of his inhibitions and we’re learning to filter which are worth paying attention to and which are just a hindrance to a moment of joy.

Being Proactive Helps Keep Things Positive

Learning from mom to be proactive by suggesting a walk, scenic car ride, or other activity works most of the time, but once in awhile dad heads out the door without warning. One time, after quickly following him out the front door, he stopped abruptly. “Why are we doing this?” he asked. In my head I was thinking “because you bolted out the door and I followed you”, or “because you decided to get the mail for the 10th time today”, but I screened my thoughts and remembered our mottos like roll with it, live in the moment, choose joy.

So instead I responded with:

Be Flexible

One day, I heard the familiar sound of “ping, pong, ping, pong”, hmmm…the 3 of us were all upstairs, who was playing with dad? “What took you so long?!” he exclaimed as I grabbed my paddle. We don’t keep score, but clearly, he wins every time.

Combining racquetball with table tennis, he even has a signature trick shot off the sidewall. How is it he can pull off the complex timing and angle for something like that, yet might not remember how to use his toothbrush?! The disease is so hard to understand which makes being flexible with our expectations and rolling with the punches vital to keeping life positive and happy.

Positive Thinking

“When life gives you lemons, make lemonade” is a well-known phrase we all learned from my parents. Earlier in his journey with Alzheimer’s dad would find ample opportunities to remind us to “look for the good” and “look forward”. A glance at one of his bookshelves shows evidence of his commitment to positive thinking with titles like: Learned Optimism and Never Act Your Age.

What is your default response when the world around you doesn’t make sense anymore?

When faced with a problem, it is natural to want to figure out a way to “fix it”. In addition to a positive outlook on life, dad’s exceptional problem solving skills and gregarious personality are serving him well as he responds to this disorienting disease.

If he thinks about going to the farm (likely remembering his teen years spent working on a WI family farm), he gets busy devising a plan on how to get there. Some various modes of going to “the farm” have been out the front door to walk there, finding his bike helmet to prepare for biking there, or suggesting they cash in their change jar so he can buy a car to drive there. Although they take car rides in their red Toyota multiple times a day, he tends to suggest alternate modes of transportation to go to the farm. We are impressed with the thought processes in some of the solutions he comes up with. One plan involved going to his YMCA office to use the phone there to arrange for a ride.

His problem solving also kicks in to aid in communication. If he can’t find a word or phrase to get his message across, he’ll find a suitable description.

Love Never Forgets

If words escape him, he can always give his sweetie a certain look, sometimes with a hand gesture, and she translates. “He’s giving me the look” might mean he’s hungry or he’s ready to go or he’s too hot or too cold. How can she decipher “the look”? Their strong marriage of 60+ years makes reading each other look easy. Months ago, mom had a series of medical appointments and although dad didn’t understand the details, he knew she wasn’t well and would show his concern with a warm welcome home after each doctor visit.

The Only Constant In Life Is Change

Life with someone experiencing Alzheimer’s is ever-changing and often challenging.

There’s the emotional toll of saying a long goodbye, but if we “look for the good”, we will also find plenty of moments of joy.

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