I could not have known how the title of this blog would fit so well. At first, the Extra Long Days were spent learning about Alzheimer’s, searching for anything to help her (curcumin is the best), keeping her engaged, riding bikes, taking walks in the park. Then came Extra Long Days because I grew weary of trying to keep as many things as “normal” as possible. Next were Extra Long Days of watching TV until bed time. Now the Extra Long Days are because I am eager for night to come, when I can get behind the microphone to narrate an item on Librivox.com. This sometimes lasts until the next day, making it truly Extra Long.
I’m thinking of some way to blend the time with Barb and the time at the microphone. I want to improve both of them. I want to resume small chores in the yard. I want us to ride our bikes again. I will take us for small rides in the car. Barb always enjoys this. But overnight trips are out of the question. For now, at least.
Extra Long Days.
I came across a book of six-word life summaries recently. It was on the Kindle in seconds. For the past few days I added one more summary to a growing list of my own. They are helpful in an unexpected way. I don’t care why. I’ll take anything that helps.
Alzheimer’s Disease. She needs extra love.
Back from Lettuce Lake. Egg McMuffins.
I wake up waiting for night.
When she sleeps there’s no Alzheimer’s.
If it’s missing, I blame Barb.
Dog’s food removed. I silently scream.
Bacon, eggs, toast, juice. Another breakfast.
Filling pill boxes. Glad when done.
She was never heard from again.
You never ask how I’m doing.
She creeps. She weeps. She sleeps.
The road less traveled is lonely.
Quiet Desperation. Now I get it.
I spent Sunday morning looking at homes for sale in the Happy Valley area near Lenoir, NC. As kids, my brothers and I spent nearly every Sunday playing on Grandpa Woods’s farm on the Yadkin River. Some of the area still looks the same, but the population has grown a lot. I know I’m feeling really low whenever I’m thinking about buying property in North Carolina.
Sometimes I just want to escape. Not forever, just to live differently for a while. I hate to drive a car. I have always despised it. My mission in life is to be a passenger. My height is in my legs, so that all cars seem like a Smart Car. I feel like a circus bear riding a tricycle.
Barb loves to drive, rather loved to drive. For her, there was just something electric about being behind the wheel. She always did most of our driving, whether the trip was long of short. The fun of trips were those great laughter-filled conversations with Barb. Well, kiss that goodbye.
Going somewhere by myself is the pits. I’ve done this many times and with one or two exceptions I was terribly lonely. Today, A trip with Barb is worse than being lonely. I’d rather be with a stranger and that would be awful.
And yet, sometimes I do have these wonderful talks with Barbara. Often, I don’t allow the talks to take place, because they wear me out. The subject is always the same: “I can’t do this anymore”. I have three ways to handle the talk. I brush her off, I give nonsense responses or I “make sense” out of what she is saying. She loves the third approach. This approach requires effort and creativity. In the end, I am drained of energy and bring things to a close. She actually feels better and thanks me repeatedly for a while for listening and tells me over and over how much she loves me.
I have always loved the sound of her voice. I still love the sound of her voice. Her voice is full of smiles, full of goodness. It’s like music. In our talks over the years, I often listened to the sound of her voice instead of the words she was saying. This didn’t always work out well. Her voice is like listening to that familiar piece of music that’s been in your heart and mind forever. I used to call her from work just to hear her talk. Today she doesn’t know how to answer the phone.
I recently had a panic retreat. This is when you almost have a panic attack, but somehow you withdraw just before it overtakes you. Like any retreat, you get the heck out and scurry back to safe territory.
The turning point came when I decided to call in contractors to demolish the family swimming pool. This beautiful sculptured body of water just outside the family room has seen decades of squealing infants, frolicing teenagers, splashing adults and treading seniors. I planned recently to drain it, bury it and cover the ground with a new lawn and flowers.
After the contractor’s first visit, I emailed our daughters to bounce off my thinking. They’ve seen their dad make good and bad decisions over the years. They know their energy-filled mom. They understand the stress it causes to care for Barb and handle the effects of Alzheimer’s Disease. They agreed, if Dad wants to remove some responsibility by demolishing the pool, so be it. Trying to talk him out of it could cause even more stress. But I could hear something in Beth’s voice. Her boys had grown up in this pool. She had hopes that her brand new boy, Ethan, would spend time in it, too.
Following these talks, my thoughts slowly turned from current pressures to memories of past events. Our friend David, who built the pool in the 80’s, had insisted that the deep end be nine feet just because of my height. Kids and grandkids grew up with a special thrill for the deep end. Scores of young people from Beth’s youth group had plunged from the upper patio into the water. One couple even held the wedding on the patio, their friends packed throughout.
For more than 20 years, until he retired, Steve took care of the pool every week. He became a trusted friend. This is uncommon in Florida, where pool guys and lawn guys come and go. Steve had witnessed all the changes in our family as the years went by. Every week he held long chats with Barb, before this horrible disease took hold.
I gave Steve a call and told him about my plans to demolish the pool. It was relaxing just to hear his voice. We reminisced about the changes in both our lives and the central role the pool had played in mine. He talked with me about unintended consequences and encouraged me to reconsider the plans and come up with an alternative. And it is exactly what I did.
My alternative was to hire competent people to restore and maintain the pool at optimum level, as if it were being used by people every day. I began by telling the contractor I was postponing the demolition. I researched pool maintenance companies until I found Paul, who did mostly commercial pools. There was no water in the pool when Paul came out to look things over. As we talked, I knew I had the right man. He agreed to care for the pool completely and to keep a watchful eye on its operation, alerting me to any problems. He would take over as soon as I refilled the 25 thousand gallons of water.
While the pool was filling, I called Dick, who had repaired any pump, filter or plumbing issues the pool had over the years. Dick and Steve were lifelong friends and his pool company was always busy. When he got out of his truck, he looked as young as he did ten years ago. We hugged, reminisced and examined the job. Dick took pictures of the control center, explained his plans for fixing it and said he’d call me in a day. Within a week, water was flowing swiftly through a reworked, restored and refurbished control center.
Paul comes weekly with his fancy commercial equipment to keep the water pure and clean. He adjusts the valves so the flow will include the spa on the upper deck. If I don’t see him, he sends me emails to let me know the status of the pool. He is God sent.
As for me, after I got rid of about ten large clay pots of wilted plants, I pressure washed the deck for the first time in years. Several times each week, I hose it down to get rid of surface dirt. On hot days, after working in the yard or doing some maintenance work on the fence, I take off my shoes and jump into the pool, fully clothed. It is glorious.
As I look out over the pool from the air-conditioned family room, the overwhelming panic of responsibility has retreated to regroup its forces and to wait, to lurk. Instead, I hear the distant squeals of excited grandchildren. I hear Hunter’s watchful barking as he runs the edges of the pool, guarding his herd. I see my friend Mark tossing Jeremy into the shallow end. I glimpse Barb and me holding each other and kissing during a late evening swim.
And just over a month ago, I watched Beth’s 10 month old son, Ethan, wriggle and giggle in the arms of his 18 year old brother, Chris. It seemed like old times. –lg
The quest narrative is one of the oldest ways of telling a story. There have been thousands of such narratives written, including King Arthur and the Knights of the Roundtable, Moby Dick, The Wonderful Wizard of Oz and many others.
A quest is a long or hard search for something. We go on quests as parents to rear our children to be strong and loving. Our marriage is a quest for a life that is better together than it would be alone. We are on a quest to grow closer to God and to allow Him to mature us. Companies are on a relentless quest for growth and higher margins.
We often describe the search for a drug to cure or prevent a disease as a quest. So far, in the quest to prevent Alzheimer’s Disease, the drugs have not succeeded. Each failure is disheartening, but companies and researchers don’t give up. The big bets are on anti-amyloid treatments.
Alzheimer’s involves a catastrophic form of brain damage. My Barbara senses that things are wrong. Every day for her is spent in a quest to put things right. But, like Don Quixote, her quest is not grounded in reality. Especially in the mornings, she carries things from room to room and back again, putting them in the ‘right place.’ A stack of folded towels, waste baskets from the bedroom, pillows, dishes from the washer. I ‘help’ her by tagging along behind and putting things where they go.
I don’t say “Good Night” to Barb anymore. Instead, I kiss her and say, “I’ll be back in a minute.” She always answers, “OK, Darling” and is immediately asleep. I usually go to my computer and read. I peek in regularly to check on her. She will wake up tomorrow to a new day and her quest for order, to “get back to Kansas,” will continue. –lg