I recently marked the third anniversary of my husband’s death. He had Alzheimer’s.
These days, I find myself looking back through photographs, journal entries, notes I made in the margins of my cookbooks, and the birthday and anniversary cards we gave each other over the years. The passing of time has shaped my vision of the future. Memories don’t bruise the way they once did, though song lyrics still bite, especially Anne Murray’s Could I Have This Dance.
Time continues to shape my perspective about dementia’s effect on romance and intimacy. And, as with the daily moments and the life-changing milestones of life, I see opportunities for rituals.
My Identity as a Caregiving Spouse
Let me begin with the obvious: People are different. How Alzheimer’s affected my husband won’t mirror precisely how it is affecting your loved one. At the same time, Alzheimer’s does cause some changes that are predictable.
The same is true for caregivers. You and I are different people. We’ve been shaped by different life experiences. We’ve developed different strengths. We struggle with different weaknesses. Yet we both face sadness and anger, anxiety and determination, despair and hope. Our identity as a caregiving spouse colors our experience in unique ways.
If you’re like me, happily married for a long time, you’ve probably developed some comfortable routines and practical ways of sharing responsibilities. I’d cook. Dick would clean up. I’d gather the trash. He’d take it outside. I’d fold the clean laundry. He’d carry the basket up the stairs. Whenever he fell asleep in his recliner, I covered him with a blanket. Whenever I came down the stairs with a basket of laundry, he jumped out of that chair and took the basket from me. I type those words and sigh. So much love in such little memories.
Dementia muddles everything. We easily recognize some changes and take over routine tasks our spouse always handled, such as paying the bills, winding the grandfather clock, or filling the car with gas. Our own adjustment is eased when the disease progression is slow.
When the totally unexpected happens, we flounder. I’m thinking of a conversation I had with John Van Gurp. He’s caring for his wife, Heather. She has dementia. Before the disease took hold, she decorated their home with all sorts of pillows, blankets, curtains, and towels. Her mental decline was fast, leaving him emotionally blindsided by what he calls, “all the cloth things.” You can follow John on his YouTube channel: John & Heather’s Dementia Journey. You can also listen to my conversation with John in episode 26 of my podcast, My Spouse Has Dementia.
Romance
Back in the mid-1990s, I worked full-time as a romance writer, having three historical novels published by HarperCollins.
More recently, I worked for about ten years bringing “Happily Ever After” to life as a wedding officiant. I’ve married more than 150 couples, customizing ceremonies with the magic of herbs, the mythology of trees, the beauty of moths, the history of keys, the Celtic legend of nine waves, the lore of maritime knots at a historic seaport, and messages from crows in a Goth-Viking ceremony held on the grounds of a haunted mansion.
I would often spend a year or more getting to know my couple so I could write their love story. Sharing not only how they fell in love, but why, made their story a central part of the ceremony.
Through writing romance novels and the love stories that anchored my wedding ceremonies, I’ve learned a few things about what attracts one person to another, and about what keeps them together.
What I’ve seen is that when two people are attracted to each other, each one is checking off items on the list called “my type.”
Before the popularity of dating apps, people placed personal ads in the classified section of a newspaper. I remember reading them, thinking I might find something I could use in creating a character for one of my books. Unfortunately, the majority of the ads said some version of the same thing: “I like dining out, sitting by a fire, and taking long walks on the beach.”
I never saw an ad that said, “I don’t cook and I have no desire to learn. I hope you like dining out.” Or, “I have massive credit card debt. I hope you have a lot of money.” Yes, I’m exaggerating, but not entirely. In those early stages of dating, people often keep some things hidden.
Of course, couples do find each other. At first, they share a physical attraction, then they share interests, and for some, the same dreams. Maybe that’s to travel, or buy a house, or raise a family. Or somehow make the world a better place.
With shared dreams, the relationship grows and deepens, because now they know for sure that they also share values. They share trust. And trust opens the door to love. In fact, I don’t think love can survive without trust, and I think it’s a lot easier to trust someone if you share the same values.
Then comes that moment when these two people can’t imagine life without the other. They may have been physically intimate all along, but now they feel that deep, deep need to commit.
Whether or not a couple crosses the legal threshold of marriage, the bond created by shared values, trust, and love assumes that each person sees the sexually intimate part of their relationship as both sacred and exclusive.
Over time, couples in love often create their own language and it may not include words. There’s a certain kind of smile, a tilt of the head, an extended hand, that private prelude and the physical and emotional closeness it promises. Think of those private exchanges as the sexual sinew that ties two hearts together and forms the kind of bond we depend on to get us through the most challenging times. We willingly, eagerly, become physically vulnerable. We trust each other with our hearts and our bodies in a way we don’t trust anyone else.
As we age, the intensity of passion often burns more ember than flame. At the same time, love solidifies and deepens. Tested by all sorts of challenges, the bonds of love hold fast…if we’re lucky.
When Dementia Destroys
When dementia enters the picture, stress can fray those bonds. It becomes clear that the future we dreamed of sharing is not what’s in store. The vibrancy fueled by hope now fades. How can it not? Dementia confuses, agitates, and destroys the memories. At the same time, caregiving frustrates, worries the mind, and exhausts the body.
We are so occupied with medicine and medical appointments, and laundry, cooking, feeding, toileting, making sure to avoid choking hazards, tripping hazards, wandering, and falling…we can’t keep up with all the changes. We get overwhelmed. Stress keeps us from good sleep.
Without sleep, anger erupts from the shadows. Cracks erode the foundation built by wedding vows. Guilt stings. And before you know it, the sexual expression of love disappears.
Sadly, the day comes when we realize that the physical intimacy we shared with our spouse not only is a thing of the past, it has been a thing of the past for some time now. Fate has already cut that cord. And it cannot be restored.
Suddenly, we scramble through our memories. When was the last time? Was it rushed? Or was it beautiful? I remember the last three times my husband and I made love because each time, I feared it would be the last. I felt desperate to remember that exquisite closeness.
Whether we remember the last time or not, whether we feel sadness or relief, dementia has bleached our relationship of something vivid and vital.
Moving from Fear to Fierce
Months go by. Without understanding why, we feel untethered, unsteady, set adrift. We feel a whole new kind of lonely and, for some of us, a growing fear.
There were times when I imagined myself at the beach, standing on the shore, the waves washing over my toes. With each ebb and flow, my feet sink into the sand. Deeper. Deeper. Suddenly, I realize my feet are not in sand. They’re in cement. I can’t move! And on the horizon, heading straight for me, is a tsunami.
If you’ve imagined something similar, take a deep breath. Because that, my friend, is when trial transforms us. That’s when we can become the alchemist.
Yes, we feel broken apart. Such destruction comes from the heavy rites of passage – death, serious illness, divorce. Our loss of identity and feelings of hopelessness threaten to destroy us, too. But our story isn’t over. Enter a new chapter: anticipatory healing.
I remember taking deep breaths, imagining my lungs expanding, holding all the air I needed until the tsunami subsided. I imagined the force of the waves dissolving the cement that locked my feet in place. I unsealed my fate.
Does a caterpillar in a cocoon feel itself changing? I don’t know. But I know that as caregivers WE feel the process of change. We know we’re not the same. We are being reconstituted, reassembled, reimagined into a new version of ourselves to be defined over time.
When you are the caregiving spouse in a strong marriage, you still feel love, just as deeply as ever. You just express it differently now. What’s important is that you do express it.
New Ways of Expressing Love
When the physical intimacy of marriage disappears, we can still experience closeness. One way is to create a calm atmosphere. Here are three ideas that might help. I say “might” because I can’t guarantee anything. I have no medical credentials. I’m not an authority on relationships, or dementia. My thoughts come from writing romance novels, officiating weddings, and, most importantly, from the lived-experience of caring for my husband who died from Alzheimer’s.
- Play soothing music.
I found an interesting article on PBS.org about the positive effects of music on the brain. The article is written by Megan Thompson and Melanie Saltzman and is based on the transcript of a podcast, PBS News Weekend. In this podcast episode, Hari Screenivasan of PBS interviews Indre Viskontas who is both an opera singer and a cognitive neuroscientist. Viskontas talks about how “Listening to calm music when you are anxious can also lower your heart rate…”
You and I know how stressful it can be to get our spouse to a medical appointment. Just getting into the car is an ordeal. We also know the stress of adding a new drug to our spouse’s routine. Playing calm music doesn’t come with stress. As Viskontas says, it can reduce stress. And that’s for both you and your spouse.
- Pay attention to what’s on the television.
If you must have the television on, avoid news channels. Avoid game shows that feature lights and bells and buzzers. Avoid nature shows about predators. Shows about baby animals? Sure! Nature shows about the beauty of the planet? Yes.
Cooking shows are okay as long as they aren’t the competitive kind with frantic people running around swearing at each other. I’ve learned that a person with Alzheimer’s could easily think what’s on the television is happening in the room. That’s how it was with Dick. I remember seeing him stand in front of the screen. He was talking to the people on the news.
Long before I met Dick, he was a news director at a radio station in Fresno, California. I wondered if there was something about that television newscast that felt familiar. So I snuggled close to him, tucked my arm into his, and talked to the people on the screen, just like he did.
- Notice the air in your home.
If the weather is nice, open the windows. If that’s not a good option, consider diffusing essential oils. My home always smells like a blend of frankincense, palo santo, sandalwood, and vanilla. I diffuse those essential oils upstairs, downstairs, even in the basement. I never use synthetic oils because I want the true magic–the physiology–of essential oils, not just the fragrance.
Of course, an easy and tasty way to enhance the air in your home is to bake cookies or bread, or make flavorful soup or a hearty stew.
Consider the products you use to clean your home. Those scents can make you inhale and smile, or wrinkle your nose and cringe.
And, of course, don’t let garbage pile up, especially soiled, disposable undergarments.
Alchemize Anger
I love fairy tales but I don’t live in one. When dementia is part of the picture, caring for a spouse can be particularly frustrating. When you’re still in denial about the severity of the disease, anger can be a way to get a response from your spouse. Speaking only for myself, if your spouse responds in a way that makes sense, well, then you know that things aren’t really that bad…yet. Of course that all changes with time.
I’m reminded of a conversation I had years ago with a stagehand at the performing arts center where I worked at the time. He was a newlywed in his forties. This was his first marriage, second for the bride. An issue about fairness had come between them. My stagehand friend thought he needed to stand his ground. I told him marriage isn’t the same kind of union as Local 84. He smiled with understanding. That’s when I added, “You’ll never regret being kind to your wife.”
I’m sure my friend doesn’t remember that conversation. I’ve never forgotten it. That’s because I often say what I need to hear. My words came back to me many times while I was on the caregiving journey.
I share that little memory with you because while there were long stretches of time when Dick seemed to plateau, there were also times when Alzheimer’s progressed so fast, I floundered, not knowing how to manage the new symptoms. Fear fueled my frustration and impatience, particularly when we had an appointment with the neurologist and I couldn’t get him into the car. I was always quick to apologize to Dick, but he could no longer comprehend my words.
I got in the habit of saying to myself: I will never regret being kind to my husband. It helped.
A Simple Ritual
Learn from my mistakes. When you get frustrated, take a deep breath and say to yourself: I will never regret being kind to my ____. Husband? Wife? Partner? How you complete the sentence is up to you. You might want to use your loved one’s name. Try it. Out loud. If the words themselves express your truth, you’ll feel their real power in your voice.
Say the words. Anticipate your healing.
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