Zita Christian shares three personal stories about her husband who has late-stage Alzheimer's. She talks about the importance of telling the stories of our loved ones before they are seized with dementia. She talks about why it's important for us to...
Zita Christian shares three personal stories about her husband who has late-stage Alzheimer's. She talks about the importance of telling the stories of our loved ones before they are seized with dementia. She talks about why it's important for us to tell our own stories, too.
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MODIFIED TRANSCRIPT of Episode 6:
The Power of the Stories We Tell
I’m losing my husband. Alzheimer’s hasn’t just muddled his memory. The disease has erased his spirit of adventure, dulled his once vibrant sense of humor, shrouded in fog the physical passion that used to be such a vital part of our lives. Bit by bit, he’s disappearing. Fortunately, I know where to find him. In stories.
If you’re caring for a spouse with dementia, your time is focused on the present. Meds on time? Shoelaces still tied? Need the bathroom?
The way you see your spouse now is framed by what he can’t do anymore, what he doesn’t remember anymore, who he can’t be anymore. That might make it hard for you to remember who he was before dementia seized him. And when the stress is overwhelming, it helps to remember your spouse the way he used to be. …Let me share three stories about my husband – modern versions of Once upon a time…
Story #1: The Sweepstaker
Looking back to when we were dating, I remember the first time I went to Dick’s home for dinner. He knew he might get hung up at work and knew I’d be coming from a distance so he gave me a key in case I arrived first. We’d been dating for nearly a year and I knew he was not going to ask me to return the key.
Even though I had been to his home many times, I felt odd letting myself in. I’d been divorced for about three years and, standing on his threshold, I let myself imagine what it would be like to marry him. I wasn’t ready to use the word “love” yet, but I liked him a lot. My daughter liked him, too. So did my dog.
Thinking I’d get dinner started, I went to the kitchen. The moment I opened the pantry door, I questioned how well I knew this man.
The pantry was full of unopened cans, all without labels, the contents handwritten with black marker. And there had to be a dozen cereal boxes,varying sizes, arranged alphabetically, many with words cut out here and there, most without tops, all of them empty.
When Dick got home, I asked him about the pantry. No, this wasn’t a scene from a contemporary version of Black Beard’s Castle. Dick had taken up the hobby of sweepstaking. This was before the average person had a home computer, well before sweepstakes could be entered online. This was the era of official entry forms, proofs of purchase, #10 envelopes, first class postage stamps, math and meticulous records.
Dick explained that a popular canned pasta company was running a sweepstakes. Each entry had to include the label from the product. He didn’t know when he’d get around to eating the pasta but he had already mailed a dozen entries. As for the cereal boxes, he explained that some sweepstakes require the boxtop as proof of purchase, some require a different part of the box.
The more he talked, the more I realized he didn’t care about the prize. He cared about the WIN. He bought raffle tickets, too. Occasionally, he picked up a lottery ticket. In the years that followed, he won a lot of prizes, hundreds of them. They ranged from caps, t-shirts, and trinkets to trips, cash, a car, concert tickets, sports equipment, and gift cards. He won the opportunity for me to carry the Olympic Torch in the summer of 1996. And then there was the half-gallon of ice cream every week for a year. That prize came in the form of 52 coupons. He liked to tuck them into birthday cards. Once, while we were grocery shopping at the little, family-owned store in our neighborhood, he gave a coupon to a stranger. Dick said the man looked like he needed a break.
Fast forward to about two years ago. We were in that same grocery store. I needed a few things from the deli. I pulled a paper ticket from the dispenser and waited for my number to be called. When it was my turn, I stepped up to the counter and gave my order to the clerk, Dick was behind me with our shopping cart. A few minutes later, I heard my husband shout, “I’m going to win!” I turned to see him waving a fistfull of at least fifty deli tickets.
Dick has always been lucky. Most of it comes from hard work. Maybe he’ll win this battle with Alzheimer’s. Maybe he’ll be the first to survive. …Maybe the moon really is made of cheese.
Story #2: The Mating Game
Dick likes television shows about nature, particularly the ones about birds. One night, he was sitting in his recliner, watching a show about the mating habits of birds. I was sitting on the couch, reading a book.
“Honey,” he said, “check this out!”
I looked up. The show’s narrator was giving a play-by-play description of a male sandhill crane’s desperate, angst-filled attempt to seduce a seemingly uninterested female. The large, male crane bowed, stretched his wings, bent his neck backwards like a contortionist, then leaped into the air like a ballet dancer. Eventually, the persistent crane was successful. Yes, I agreed, the display was interesting. I went back to my book.
When the show was over, my husband got out of his chair. I assumed he was headed to the kitchen for a snack. Instead, he stopped right in front of me, so close I had to look up.
He bowed. He stretched out his arms, lifted and lowered his shoulders. He “craned” his neck towards his back. And the man leaped into the air! Not once, not twice, but three times!
I was dumbfounded. Then I saw the twinkle in his eye and understood when he said, “Is it working?”
Yes. It worked.
Story #3: The Rat in the Livingroom
The last story I want to share begins early one summer morning in 2016 or thereabouts. I was still asleep – until Dick ran up the stairs yelling that there was a rat in the living room. A rat!
I jumped up, got dressed, and called Tom, the property manager for our condominium complex at the time. He came right over and brought a trap with him. Tom and a few of our neighbors knew that Dick had recently been diagnosed with Alzheimer’s. Tom asked Dick if he was sure that what he saw was a rat and not a mouse. Dick was adamant. He saw a rat. A big one. Right there in the living room where the two men were standing.
We live across the road from a nature center. Wildlife is everywhere. I reminded Tom that Dick had been an avid hiker and lived on the Appalachian Trail for six months. He knew the difference between a mouse and a rat.
Tom looked around the room, in the corners, behind furniture. Nothing. Then he moved a tub chair. No longer concealed by the upholstered skirting, the rodent – a little chipmunk – ran into the kitchen and disappeared. I relaxed. Yes, a chipmunk is a rodent and it had to be removed from our home. But it was a chipmunk, not a rat. Tom set a trap in the kitchen.
That day passed. So did the next. The trap stayed empty. Meanwhile, I researched the danger of being bitten by a chipmunk. I checked to be sure we had plenty of antibiotic ointment, just in case.
On the morning of the third day, Dick again went downstairs before I did. He heard a noise coming from the half-bath off the kitchen and went to investigate. The chipmunk was swimming inside the toilet bowl, frantically, futilely, trying to climb up the slick porcelain wall.
Dick shouted for me to come downstairs. He told me to get the Sam Adams ice bucket (a sweepstakes prize). He would have gotten the bucket himself but he wanted to keep an eye on the chipmunk …in case it jumped out of the toilet.
I got the bucket. Dick was about to reach into the water to pick up the clearly weakened creature until I told him that chipmunk bites are dangerous. It might have gone into the toilet because it was thirsty. It might be thirsty because it had rabies!
My husband thought for a moment then disappeared into the garage. A few minutes later, he came back with an extra-long shoelace he had removed from one of his hiking boots. I watched as he tied one end of the shoelace into a noose.
As though demonstrating one of the life-saving skills he had learned from the Appalachian Mountain Club, he slowly lowered the noose into the water. He told me where and how to hold the bucket. He talked to the chipmunk. “Don’t worry, little fella. We’ll get you out of there.” Soon, I was echoing him. “Hang in there, little guy. You’re going to be okay.”
An agonizing fifteen minutes passed. Every time Dick thought he could slip the noose around the chipmunk’s body, the soggy ball of fur swam in the other direction.
Finally, success! With the care of holding a newborn, Dick lifted the chipmunk out of the water and lowered it into the bucket I was holding. The little thing was exhausted.
Dick held the bucket as I opened the back door onto the deck. We both knelt on the floor. Dick carefully turned the bucket on its side so the chipmunk could leave. But it didn’t move. We looked closer. The body lay lifeless at the bottom of the pail.
Ever so slowly, Dick tipped the bucket. Alfred (Yes, Dick had named him by now) slid down the side of the bucket and landed on the sun-warm wood. Still, he didn’t move. Dick leaned down. “Go on,” he said, “you can go home now.”
Suddenly, Alfred perked up and ran off! Dick speculated on the stories Alfred would tell his family that night. I hoped Alfred knew how lucky he was to have fallen into our toilet. Had he gone elsewhere, he might have been flushed away.
I didn’t just “happen” to remember the stories about my odds-defying, nature-loving, tender-hearted husband. I want to – need to – remember the man he was. Remembering helps me engage with him, have conversations like we used to.
I play make-believe. He’ll talk in a hodgepodge of syllables and I’ll say, “Yes, I do think the weather will be nice this week.” Or, “Yes, I agree. Let’s do that tomorrow.” Or, “Yes, let’s put some flowers on the deck.” …
I don’t think he understands my words any more than I understand his. It’s not conversation. It’s just the sound of conversation. But sound is powerful. I talk to him as though he made sense and I understood, as though we’re still connected the way we used to be.
You see, I know that in the months to come, he’ll fade away even more. The vacant stare that used to overtake him once in a while is now how he looks a good part of every day. He’ll sit in the breakfast nook and stare out the window. I can wave my hand in front of his eyes…and he doesn't blink. I wonder if he remembers who he used to be. One day not long ago, he got upset with himself over something. He pressed his hands on either side of his head and cried in desperation, “I just want it fixed!” Oh, Honey, I do, too.
This past week, I shared with my dementia support group that I’d had a couple “dismal days” … you know, times when you feel buried in sadness. They understood. They’ve been there, too. Each of us is grieving a loss that hasn’t happened yet, but will. It’s a loss that constantly wears us down.
I shared with them that in addition to remembering the person Dick used to be, I’d spent time remembering the person I used to be. That’s what had landed me in the pity party pit of despair. That’s also what helped me climb out.
I’m a storyteller.
The late fantasy writer Ursula LeGuin said, “There have been civilizations that did not use the wheel. But there have been no civilizations that did not tell stories.” As dementia caregivers, we need to tell the stories of our loved ones.
We need to tell our stories, too. We need to share what we’ve learned, and we need to let other caregivers know they aren’t alone.
We also need to remember that we control the story. No, not the physical reality that ends in death. We control the story that lives on.
Speaking only from personal experience, when a loved one dies and leaves a legacy of positive qualities, we like thinking about them. We like talking about them. We like looking at old photos, listening to certain music, going to certain places, eating certain food. We like sharing our memories. No, that doesn't stop the tears. And that’s okay. We need tears.
When caring for a family member and your relationship is strained and has been for years, the pressure of caregiving can cause challenging emotions to erupt. If that’s you, please see a therapist, a social worker, a counselor. Join a support group. Talk to a trusted friend. Talk to a stuffed animal. Talk to a tree. Talk to the moon. Just talk. Tell someone the story of what you’re going through. Get the words out. Freed from your heart, the painful words will wither, their effect on you will weaken over time.
For most people, grieving the death of a loved one starts, well, at death. For those of us caring for a loved one with dementia, grieving starts long before death.
Can the healing start before death, too? I don’t know. But the stories we tell about our loved ones can become the cushions that break our emotional fall. They can be the bricks that help us build our life again when the time comes.
Before I close this episode, I want to say thank-you to the person who went to my website: MySpouseHasDementia.com and left a 5-star review titled “On the Road Again.” The writer shared some personal, painful details about her struggle caring for her mom, and about the struggles of other family members caring for loved ones. She’s doing what I do every day: Fill a glass with water. Get close. Say the word “Resilience” onto the water and visualize the power of the word being infused into the water. Then drink.
I know that the challenges of caregiving are real. The effects are exhausting. I believe that if I keep telling myself the story of how I’m resilient, how I’m able to bounce back, I increase my chances of surviving. And that, my friends, is the goal of this podcast: Help caregivers survive.