There was a difference between the news I expected and the news we received. Hearing "Alzheimer's," our future suddenly crumbled. The disease affects everyone differently. Maybe my husband wouldn't forget who I was. Maybe he wouldn't forget where we...
Are you a caregiver for a spouse with dementia? I launched this podcast for you. I hope it proves helpful for all dementia caregivers, whether or not the patient is a spouse. I'm not a professional in the field of dementia. I'm a wife struggling to care for my husband.
I've included a cleaned-up transcript of this episode. Please check it out.
In the meantime, check out episode 54 of my other podcast, Ritual Recipes. That episode includes self-care rituals. It was that episode that convinced me I had to launch this podcast.
Please join me on Facebook at "My Spouse Has Dementia." By sharing our stories, we can help each other survive.
Episode 1: Getting the Diagnosis
My husband, Dick, is a gentleman, a handsome, honest, hard-working, romantic man eight years my senior. He likes to buy me jewelry, especially for birthdays and anniversaries. I’m recording this in January of 2022. Our 40th wedding anniversary was last summer. We didn’t celebrate. He doesn’t know who I am.
That’s a slight exaggeration. There are only a few times a day when he doesn’t know me. Most of the time, he just doesn’t know my name, but on some level he does know me. That’s when he calls me “Honey.”
One day, after a stressful bout of disorientation, Dick looked puzzled and said, “Who are you?”
I said, “I’m Honey.”
Looking puzzled, he stared at me. “The real one?”
I assured him I was the real one, though there have been a time or two when I questioned who I had become, more specifically, mourned who I no longer was. When that identity crisis rolls in, I remind myself that I’m a writer and that I have a story to tell.
As a writer, I know how important it is to start the story on the day that’s different. For this story, that was the day we got the diagnosis. A little context is important here because, as common as Alzheimer’s is, every patient is different. Every patient’s journey has its own signposts and potholes. Let me turn back the clock to a version of “Once upon a time…”
In 1999, Dick took a six-month leave-of-absence from his job as the finance manager of a car dealership so he could hike the Appalachian Trail. That’s a 2,600+ mile walk in the woods from Georgia to Maine. I’ll tell you a lot more about that journey in future episodes. For now, just know that Dick had never backpacked before going on that adventure…and he had absolutely no sense of direction. What he did have, what he has always had, was determination.
He turned 60 while hiking the AT. Four years later on Labor Day weekend, he had a heart attack. A big one. He was half-way up a mountain in Vermont. Three stents later, he recovered 75% of his heart. That was as good as it would get. He went on to hike again and climb a lot more mountains – though now he couldn’t breathe at heights above 10,000 feet. No more photos of him above the clouds.
For a while, Dick saw his cardiologist and our family doctor four times a year to monitor his heart and the meds he was taking. I always sat in on the appointments so I could take notes. Dick got stronger and continued to hike, but only with a group. That was the agreement we made. Doctor appointments changed to just twice a year. Things looked good.
Around 2005, two years after the heart attack, I told our family doctor that Dick had become noticeably forgetful. The doctor asked Dick a few questions and Dick answered with some funny comment. He has always had a good sense of humor. It made him and the situation seem normal. I noticed the doctor had a new poster on display in the examining room. It featured a disgruntled old man, a list of behaviors to watch for, and the caption, “Is It Alzheimer’s?”
Dick and I had been going to this doctor for nearly twenty years. He knew us. He didn’t seem worried and suggested we “observe” for a while. I knew he believed me, though there were times when I questioned myself. Like the day I accused Dick of conveniently forgetting something I had asked him to do. We were standing in the kitchen. I’ll never forget the agony in his voice when he said, “I don’t want to forget!” I felt horrible. I felt ashamed. In years to come, I would feel that shame many times.
I’ve come to think of that incident in the kitchen as a small but meaningful stepping stone on the path to acceptance, something we would both struggle with as time went on.
A few years passed. Behavior that was annoying became dangerous. Dick would wash his hands and leave the water running. He’d turn on the stove and forget to turn it off. One day, we were running errands and he got upset with me for stopping at a red light. “Go! Go! You’re supposed to go!” Another day, he went to the post office to mail his sweepstakes entries and buy stamps. He left his driver’s license on the counter. Yes, he was still driving. Giving up the car is a story for another episode. So is his sweepstaking hobby.
More time passed. More than once, Dick mangled the family checkbook. He’d been a finance manager at a car dealership for almost 30 years and could calculate interest rates and payments in his head. In the grocery store, he computed change faster than the cash register. It wasn’t like him to make errors in math. Fortunately, I could fix the checkbook.
Then one morning he was at his desk in the bedroom, working on his computer, looking for new sweepstakes, something he did every day. I was carrying a basket of laundry up the stairs. I heard a strange man’s voice. It was coming through the computer. He was telling Dick to click a certain button on the screen.
I dropped the laundry basket, ran to the desk and took the credit card from my husband’s hand. I spoke to the invader in the colorful language I’d heard growing up in a Navy town. Then I shut down the computer.
Dick didn’t understand why I was so upset. He explained that his computer had frozen and, right when it did, a man said he was from Microsoft and could see that Dick’s computer wasn’t working. The man could fix it. All Dick had to do was give him a credit card.
My hand shook. “Did you? Did you give him our credit card number?” “No,” he said, then added, “I don’t think I did.”
I called my friend and computer guru, Marsha. She drove two hours from her home outside Boston to our home in central Connecticut. She went to work immediately and destroyed the invaders ravaging Dick’s computer. It took hours.
Marsha went with me to the bank where we spent more hours working with bank security to make sure the accounts had not been breached. We contacted my credit card company and all three major credit bureaus.
Normally, I’d have no issues dealing with the bank or the credit bureaus on my own. But the “what ifs” rising from the takeover of Dick’s computer rattled me in a new and alarming way. It was a prime example of what caretaker stress is all about.
At Dick’s next medical appointment, I told our family doctor about the checkbook mess and the computer fiasco. Something was seriously wrong.
The doctor just nodded. Calmly, he handed Dick a pad of paper and asked him to draw the face of a clock. Show the time as ten past eleven.
I can’t describe how frustrated I suddenly felt! I needed help! How could a simple drawing reveal anything of value?
Dick drew the clock and gave the paper to the doctor who looked at the paper and passed it to me. Dick had drawn something like a circle. It was lopsided but his intent was evident. The numbers were something else. Crudely drawn, misshapen, they were scattered all over the page, some inside the circle, some outside, some backwards, a hodgepodge of confusion.
This is what was in my husband’s head? I wanted to leap out of my chair, wrap my arms around him and tell him not to worry, that we would figure this out. But he didn't look troubled, at all. Our doctor looked sad. I sat there, numb.
The doctor referred us to a gerontologist. Dick was diagnosed with early dementia in September of 2014, at the University of Connecticut Medical Center in Farmington.
Dick’s symptoms progressed. Two years later, after a new battery of lab tests, Dick and I sat in the office of a neurology nurse practitioner.
It was May of 2016, a sunny Friday afternoon. Dick had just completed the last of several tests the nurse had given him and was sitting on the opposite side of the room. He didn’t have the mental Velcro to attach meaning to her words. I did. Aneurysm. Vascular Dementia. Alzheimer’s. Dick had all three.
My mind raced. Maybe he could have surgery for the aneurysm. He could take medication to delay the progression of Alzheimer’s. Maybe there was some kind of physical therapy he could do, too. Maybe he could get into an experimental drug program. Maybe there was already a cure on the horizon.
Five-and-a-half years have passed since the day the word “Alzheimer’s” took us hostage. My husband can’t get a shower by himself. He can’t dress himself. I help him shave so he doesn’t put the electric razor on his tongue. He needs help going to the bathroom. Sometimes, he needs help walking. Sometimes, he needs help eating. He is now in the late stage of the disease. Note, I said late, not last. Things will still get worse. I know that. And there is still no cure. I know that, too.
Now and then, I get a glimpse of the funny, sweet man I married. It doesn’t happen every day, but often enough to affirm that he’s still in there. Somewhere.
PURPOSE OF THIS PODCAST
In these last five-and-a-half years, I’ve learned a lot about dementia. Not technical aspects of the disease but about its effects on a marriage. That’s why I’m doing this podcast. I’ve put it off for over a year. Because for the podcast to be helpful, I’ll have to talk about things I’d prefer to keep private. And I do want this podcast to be helpful.
There have been a few funny moments on this journey. I’ll share those, too. In the meantime, I’m saying to you, one caregiver to another, we need to know the physical, emotional, financial, and spiritual toll we have to pay. Our ignorance can be deadly. I’m not kidding. A university study back in 2003 showed that in family caregiving situations like ours, 63% of the caregivers die first. Let that sink in. The survival statistics are better now, but still not great.
A SIMPLE RITUAL
Self-care is not a buzzword. It’s vital that we take care of ourselves. You’ll find activities that speak directly to you. In the meantime, here’s a simple ritual: Every time you pour a beverage for yourself, hold the glass or cup close to your lips. Say the word “Resilient.” Say it out loud. You need to infuse your beverage with the vibration of the word. It’s coming from your spirit. Drink, Imagine your beverage filled with the strength you need to take care of yourself.
We need the support of family and friends. I’m lucky to have my daughter, my son-in-love, my grandson, my sisters, my friends and my neighbors. I have history with them. That helps when emotions are overwhelming.
We also need a professional support group. If you’re looking for one, the Alzheimer’s Association can direct you to a local chapter. There you’ll find information on local support groups.
If you’re already in a support group, please tell them about the podcast. Remind them, as I’m reminding you now, we need to help each other on this journey. We need to survive.
In the words of my friend Victoria Burdick, a retired hospice chaplain, “Between now and dead, you’ve got a purpose. Don’t be timid.”