“Wake up to a sunny day. Not a cloud up in the sky. And then it starts to rain. My defenses hit the ground. And they shatter all around. So open and exposed”
Lindsey Haun, Broken
I sat there sweating after a vigorous walk – even in the thirty-degree weather.
There in the darkness, I perched on the plastic wicker sofa on our patio. My feet were on the seat with my knees drawn close to my chest, providing a resting place for my chin. The cushions had been put away for winter. I breathed in deeply, smelling the smoke from the neighbors’ fireplaces.
“Make it stop,” I whispered as I buried my head deeper into my knees.
The irony flooded over me that while I was writing a book on adapting to change, I was grappling with the single most significant change of my life, Donn’s life, our married life.
I paused for a moment and contemplated the cognitive model that was the basis of my book, the think-feel-do spiral. As a behavioral scientist, I commonly write about and give motivational talks on human behavior and how to manage change. I heard myself parroting back my own written words like I was giving a lecture.
“Cognitive-behavioral theory suggests that a person’s thoughts, emotions and behaviors are tightly interconnected. The brain is constantly making judgments about everything around us. Those thoughts influence and develop our feelings. Our emotions then affect the way we act. And, from our actions, we get results. Our behavior and results subsequently influence our thoughts. And, the spiral begins again.”
“This phenomenon can happen in an instant, a second. So fast, in fact, that we often don’t even recognize the linkages. Two people may experience the same event and yet exhibit very different cognitive spirals. The goal behind understanding the cognitive spiral is to acknowledge that while we cannot control every aspect of the world around us, we can control how we interpret and deal with things in our environments.”
“In theory, if we can change our thoughts, we can positively adapt to any change – planned or unplanned – that may come our way.”
“Ya, ya, ya,” I blurted out to no one but myself – a signal to move on, in typical New York style.
My thoughts focused on the example I often gave in executive workshops.
“A manager resigns from her executive position to take a work-from-home job within the same company to modify her schedule to better fit her family responsibilities. The company announces a new internal leader. Two subordinates have unique reactions.
Subordinate A thinks, ‘Wow, I am so happy for my old boss. I am glad she and I can still work together, and she can work out a job position that is best for her family.’ She feels excited and eager to work with the new boss. And, she sends a note of congratulations, offers help to the new executive, and sends a message of congratulations and support to her old boss.
Subordinate B, on the other hand, thinks, ‘Oh no. I don’t want a new boss. Why wasn’t I promoted to be in charge? They don’t recognize me or my talents.’ She feels dismayed, cries, and then immediately resigns from her position with no notice.”
“Think-feel-do.
Think-feel-do.
Think-feel-do.” I muttered, realizing that my own written words were mocking me now. “Those concepts sure are easier to write and lecture about than implement.”
I had stopped sweating but continued sitting in the cold, reflecting on some of my recent spirals in action. I landed on our fights. I knew I needed to go into the house.
Somewhere in the middle of our marriage, we had gone to a counselor to learn how to fight. We recognized that our squabbling was negatively impacting us. Beth, the counselor, helped us identify techniques we could use to work through issues and differences before things got out of control.
Uncharacteristically, we started having fights again – big ones – in the last year. Using Beth’s techniques, I would try to deescalate the conflict. Amidst an argument, I would often blurt out, “you’re not engaging in any of the techniques we agreed to when we worked with Beth. Why did we spend all that money if you are not going to use any of these techniques?”
But, I found myself mainly ending the fights by walking away with Donn screaming at me about something.
One night, I came home from a long and challenging day at work. I went straight to the wine cooler, poured myself a tall glass of wine and plopped onto the barstool at the kitchen island. I was mindlessly looking at my phone when Donn walked in.
“When did you get home,” he asked.
“Just a few minutes ago,” I grumbled.
“Why are you always so angry at me!” he sputtered back.
“What – what are you talking about? Look, I’m not angry at you. I’m simply tired. It was a hard day at work.”
“You’re always so angry – all the time,” Donn shouted.
“I am not ALWAYS angry – I’m just dealing with a lot. Maybe I snapped a little. But I didn’t mean anything by it.
What do you want – a Stepford wife that has no emotions or any reactions to things? Besides, Beth taught us not to use the word always – no one ALWAYS behaves the same way.”
“Well, you always seem mad,” Donn screamed.
“Geez – am I not allowed to have any kinds of feelings –I’m upset about work – this is just who I am – do you not like me anymore? You know I have a demanding job,” I cried out.
I grabbed my wine, stomped upstairs, and slammed the bedroom door.
I need to divorce him. How did it go from a peaceful glass of wine and a simple response to World War III in 30 seconds? He is flying off the handle at everything.
Looking back, I could explain how I thought, felt, and behaved in response to many of our arguments.
Think: Donn wants someone who has no emotions and acts perfectly. He doesn’t care anymore. He’s not even trying to resolve our differences.
Feel: Angry. Hurt. Distraught.
Do: Retreat and avoid conversations.
The day following a major fight, it was as if nothing had happened.
Because for him – it hadn’t.
For me, I would be confused, mad and sad for days.
It had been a month since his formal diagnosis of Alzheimer’s disease.
That day, I sat with Donn in the doctor’s office.
“The findings suggest a pattern consistent with Alzheimer’s disease and vascular disease- what we call a mixed diagnosis. You are experiencing short-term memory loss. Also, at this early stage, we find that patients begin having trouble solving problems, difficulty completing familiar tasks, and may experience confusion around time. They also start losing their self-awareness and don’t pick up on social-emotional cues from others. They may have changes in mood and personality,” the doctor said matter-of-factly.
I now had a reason for the forgetfulness, the fights and other behaviors, but I still could not wrap my head around it. After hearing his diagnosis, my think-feel-do spirals were out of control – like a rollercoaster caught in a perpetual loop, with speeds constantly changing and her thoughts just cycling and cycling. Donn didn’t want to talk about it, and he didn’t want me to share the news with friends.
Most days, I focused on doing. The doctor had provided us with some tips on managing. So, I ran through my checklist, trying to tick off as many items as I could.
- Pick up a book on cognitive impairment. Implement techniques suggested. Check
- Research medical articles on the progression of Alzheimer’s. Check
- Look up the MIND diet and incorporate concepts into meals. Check
- Make a weekly meal plan, so Donn knows what we are having for dinner. Check
- Make sure the tracking function is on everyone’s phones. Check
- Keep a shared calendar with appointments. Check
- Find new ways to explain things when he doesn’t understand. Check
- Be more patient. Check minus
- Don’t bother with fights because they will only be circular and not lead to any positive outcome. Check minus
- Attend all of his doctor’s appointments to take notes. Check
- Investigate if he qualifies for medical research trials. Check
- Remember that _________________“fill in the blank” is not his fault. His brain is not functioning properly. Check
- Find care partner support. Total fail
At night, I walked. I am not a fitness buff. It was simply my way of dealing with the day. My favorite time to walk was right at dusk before it got too dark. Most people were inside having dinner or watching TV. I had the neighborhood to myself. I didn’t have to say hi to anyone.
I enjoyed the smells of the dinners cooking – grilling steak, Italian – the garlic was a dead giveaway. Sometimes, I imagined herself knocking on the doors of the houses and saying, “What’s for dinner? Do you have an extra seat? It smells so good.”
December was my favorite month because the houses and yards were lit up with Christmas holiday lights and decorations, making the neighborhood shine. I found herself judging whose decorations were my favorite, which streets embraced the holiday spirit.
I also noticed the doors, the light fixtures, the landscaping, and the sidewalks where the tree roots made them bulge. I knew how many houses were English Tudors, Cape Cods, or Traditional Style homes.
Occasionally, I saw money, pennies mostly, once a $20 bill. I left them for the neighborhood kids to find. It was just me and my iTunes playlist, trying to figure things out.
On these walks, my think-feel-do spirals led me mostly to cry. Hidden in the dark of the night or behind sunglasses, I let the tears flow. Occasionally, I let out an audible, shoulder-shaking sob.
No one was on the street to hear.
With considerable fanfare and celebratory symbols, my Fitbit watch let me know that I had walked the length of Italy. I expected to be skinner, but I was not. It was probably the extra glass of wine or two or three I would have each evening.
When I returned, I called out, “I’m home,” with as cheery a voice as she could muster, making sure I had wiped away any evidence of tears.
And I snapped back into action.
“How about I give the dog her pills tonight?
I made a list of items we need to take care of around the house. Do you want to review these and take a couple to work on this week?”
One night, I called upstairs.
“Donn, I’m heading out for a walk. I’ll be back in about 30 minutes.”
“Ok, I’ll get dinner started,” he replied. “What are we having?”
“We have chicken fajitas listed on our meal plan. You’ve made these before. Just cut up the chicken, pepper and onions and fry them in a pan.”
“Ok – got it. I’ll get started in a few minutes. It should be ready when you get home. Have a good walk.”
That night, my thoughts were flying faster than I was walking.
How long does he have to live?
How fast will the disease progress?
How do I make the decision that he can’t drive?
Will he be able to walk?
Will I be able to care for him on my own?
Or, will I have to decide that he can’t live at home?
How do we plan our future? He’s here now and can help plan. But, he says, “I don’t want to plan your future. It would be best if you decided where you want to live. You have much longer to live than me. And, at some point, I may not even recognize my surroundings.”
How do I plan the future without him? For the last 27 years, I have only planned my – our – future with him. He’s already retired. We had it designed. In a few years, I would retire. We would move to Georgia and spend half our time there and a half at our home in Florida. We would invite friends and family to Florida to visit us at the beach. Surely they will come to the beach. Donn was excited for regular shrimp sandwiches from the local café.
Do I wait to retire? Do I retire early? If I wait, I’m afraid the disease will have progressed. How would he handle a move? Do I need to keep him near the familiar? The issue is not whether I can find care for him. There are options. The problem is, where can I set up the best network of psychological and social support for both of us and eventually just for me.
Just for me.
Just for me.
How do I live on my own? How do I build a life without him? I’m so scared I don’t know how to make friends. We’ve always done it as a couple.
What is my definition of happiness – not ours? What are my goals – not ours?” When I present options, he says, “it’s your choice.
“Make it stop,” I whispered as I arrived back home.
I walked into the quiet kitchen and sat down on the barstool. I began mindlessly scribbling on the notepad where I kept our grocery list.
Think-feel-do
Think-feel-do
Think-feel-……do
“I’m home,” I called out.
I could hear Donn coming down the stairs asking, “What time is it?
“7:30”
“Oh, wow, that late, huh? What’s for dinner?”
“Chicken fajitas, I replied gently.
“What goes into chicken fajitas again?” Donn said as he wandered into the kitchen.
“Chicken, peppers and onions. Do you want to help me make them Donn?”
A tear dropped onto the paper as I crossed out the words.
Think-feel-do
Think-feel-do
“Think–feel– …….do.
Ripping the page from the notepad, I got up from the barstool and walked to the trashcan.
“Let’s get started,” I said, turning and opening the door to the wine cooler.
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Dear Readers – I hope you enjoyed this piece. I would appreciate it if you would leave comments in the discussion on your reactions to my essay. Please also share your own experiences with caregiving!
I am sending much love to those who are on a caregiver’s journey.
In solidarity and support,
C-
xoxoxox
The Playlist: Walking my way through love, loss and renewal 