Today is September 22, the Autumn Equinox. Yesterday was World Alzheimer’s Day. As we go deeper into the dark half of the year, I’m going deeper into the rituals I want to share with you. This episode isn’t easy for me to talk about. It might not be easy for you to hear. Please don’t turn away. You might not need this episode. You might know someone who does. The focus? Self-care rituals for caregivers whose spouses have dementia.
At the basic level, a caregiver is someone who provides assistance to someone who is ill, disabled, or otherwise incapable of taking care of himself or herself. That definition is too broad for what I feel qualified to talk about. So I’ve limited my focus to caregivers whose spouses have dementia, Alzheimer’s Disease in particular.
My husband, Dick, and I have been married for 40 years. He has Alzheimer’s. Late stage. I’m his caregiver, his only caregiver, at least for now.
Since 2014 when my husband was diagnosed with dementia and 2016 when diagnosed with Alzheimer’s, I’ve come to understand that my survival depends on accepting these two facts:
- There is no cure for Alzheimer’s.
- The disease is fatal.
If you’re on the caregiver’s path, here’s some information you MUST keep in mind.
Back in 2003, Ohio State University conducted a six-year study about caregivers and dementia. They found when it comes to family caregivers, like those of us caring for a spouse, — brace yourself — 63% of the caregivers die first, as in before the patient with dementia. That was 18-19 years ago.
More recently, a 2018 study by Stanford Medicine referred to the strain on those caring for a family member with Alzheimer’s. Their estimates were closer to 40% of caregivers dying first. That’s certainly better than 63% but it’s still not good.
Here’s what I think is a key take-away from that report. “It isn’t disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with the Alzheimer's.”
That same year, 2018, the National Library of Medicine, a member of the National Institutes of Health, issued a report. The National Library of Medicine had reviewed 17 years worth of studies about the effects of caring for a family member with Alzheimer’s or other dementia. They found mixed overall effects of being a family member caring for someone with dementia.
They concluded that the caregiving itself isn’t directly associated with an increased risk of death of the caregiver. The report said, “Rather, an individual's appraisals of the stress and strain of care responsibilities moderate the effect of caregiving on mortality.”
Now, that’s the best news I’ve heard in a long time! That speaks to the importance of how I view the stress I’m under. And I know how well ritual helps me deal with stress.
That said, I know that people are different. You might not feel strong. You might feel motivated by the 2003 statistic I mentioned. If that’s the case and you are a family caregiver of someone with dementia and you want to outlive the patient, set yourself a goal. Simple math. 63% of caregivers die first. You want to be in the 37% who survive.
Ritual #1 – 37%
If you have pen and paper handy, grab it and write down 37%. Write it three times. If you don’t have pen and paper handy, use your finger and write 37% on your palm. Write it three times. Now blow gently on the paper or on your palm. You’re adding your breath, your spirit, to your intent to survive, to be in the 37% of the statistic. … You’ve just done a ritual: a visible act performed with invisible intent. It can be that simple.
From now on, whenever you feel overwhelmed by the challenge of caregiving, write 37% on a piece of paper, on your hand, in the air.
From my years as a certified handwriting analyst, I know that the physical act of writing stimulates something in the brain. Will writing 37% make you feel less overwhelmed? Hardly! What it will do is remind you why you need to take care of yourself.
For all of us, there’s a big difference between knowing something in your brain and accepting it in your heart. Looking back to 2014 when my husband was first diagnosed with dementia, I can see how the disease progressed. He hadn’t driven a car in several years. Now, he couldn’t count money. He couldn’t read.
Time passed. Things got worse. I knew I had to make changes to my will, power of attorney, and other end-of-life documents. I met with my attorney. He helped me revise everything to reflect the reality of our marriage.
My attorney emailed the documents to me so I could review and sign them. It took me almost two years. Why? Because I couldn’t move past the fact that Dick would no longer have my power of attorney. He would no longer be able to make medical decisions for me should I become incapacitated. Now, you might think, well of course he can’t. He has Alzheimer’s! I know. Still, in the margin of the draft of my new will, I wrote this note to my attorney: “But what if there’s a cure?”
It took me two years to realize that I was in denial. Alzheimer’s is fatal. There is no cure.
Ritual #2 – Create and Destroy
Tibetan Buddhist monks have a tradition in which they create intricate, colorful sand mandalas and then destroy them. The creation requires patience, focus, and stillness. It can take weeks. The destruction is swift.
There are plenty of YouTube videos that encapsulate the exquisite creation and the total destruction. The purpose is to remind all involved — those creating, those destroying, and those observing — that nothing is permanent. Caregivers of spouses with dementia need to remember that truth. Denying it can be deadly.
There are plenty of DIY sand mandala kits you can buy online. To make the process a ritual for caregivers, simply add intention. How?
Attach a loving memory of your spouse to every color. These are your memories so you decide which colors represent which memories. Here are three examples to get you started:
When you use green, remember what you grew together. That could, of course, refer to having children. It could also apply to growing a business, or community, a garden, or support for a grass-roots cause. Remember, too, that when something grows, it changes. Its container breaks. It takes on a life of its own. The growing pains may give you a whole new role. Or, you may have no place in the new picture. Accept it. You left a legacy together. Let that be enough.
When you use red, remember the passion you shared. Think back to when you met, to that first eye-to-body contact. What did you see that you liked so much? What about eye-to-eye? Was there a simple curiosity or a magnetic attraction? Voice-to-voice. Who spoke first? How did the conversation progress? What did you learn about each other?
Hand to hand
Hand to head
Mouth to mouth
The progression of contact continues to physical intimacy. As for the steps, use your imagination. I don’t want to jeopardize the “clean” rating I have on this podcast.
Keep in mind that when an intimate relationship is in trouble, the first point of contact to disappear is… hand to head. I would always point that out to my students when I taught a class on writing romance novels.
Long ago, many cultures believed — maybe they still do — that a person’s spirit lives in the head. That’s why you’ll often see skulls in rituals of ancestor worship. It’s not intended to be gory. The intent is to honor the ancestor’s spirit.
Bring that idea into the present. Look at wedding photos, especially photos of the first kiss. As a wedding officiant, I’ve seen a lot of those first kisses. When the groom slides his hand around the back of the bride’s head, or she strokes his cheek, or he cups her face, a second before they kiss, I imagine that on some cosmic level each is compelled to touch the other person’s spirit.
In other episodes, I’ve talked about how energy in the heart chakra is expressed through the hands, making touch the physical expression of love. You can see how the head, the heart, and the hands are all connected.
Think about all the ways you connect with your spouse as you work with the color red.
When you use yellow, remember how and what the two of you communicated. Laughter is the best medicine. How did you use it to boost each other? How did you use it to soothe and heal each other’s pain? Did you write and/or read poetry to each other? Did you call each other by a special name? Or, share a secret handshake? A coded gesture? Do you have a song you consider “ours”?
You’ll notice that I phrased some of these examples in the past. That’s because the ability to communicate with a spouse who has dementia fades. It happens slowly at first, so slowly you might not realize there’s now a fracture in a connection you once shared. You might not even realize when the connection breaks. But then more and more connections break. And the day comes when your spouse doesn’t speak in sentences. Or, if he does, the words don’t make sense.
Or, the words do make sense…and they hurt.
Yes, you can tell yourself that it’s the disease swearing at you, not the spouse you love. That can be hard to remember when you’re exhausted from continually cleaning bathrooms, washing soiled clothing, soiled sheets, shampooing soiled carpets.
If you don’t take care of yourself, if you don’t get enough sleep, your nerves will feel frazzled, your own words will turn sharp. Feelings that rise in a moment of anger and frustration can vanish suddenly. But the energy of your words will hang in the air like a bad odor.
So before you say something you’ll regret, walk away. Go outside. If that isn’t possible, go to another room. Break the connection. Defrag.
As an aside here, you do not have to purchase a sand mandala kit. Go to your kitchen. Get a plate, the plainest one you have. Look in your spice cabinet. Pull paprika for red, dill for green, curry for yellow. Make a spice painting.
When your painting (sand or spice) is finished, spend some time reflecting on the memories you honored in the colors you chose. Give yourself a few hours, or days.
When the time comes to destroy the painting, light a candle. Fire is the element of desire, passion, will power, creativity. Remember that the purpose of creating and destroying a sand mandala is to accept that nothing is permanent.
In your marriage, the time will come when you have to let go. Destroying your sand painting might help you accept that truth.
Ritual #3: A Water Ritual
In astrology, there’s a basic understanding about the four elements: Fire acts. Earth manifests. Air thinks. Water feels. I use those fundamental building blocks in creating rituals.
Sometimes, the watery realm of feelings is labeled “wimpy.” I suspect that those who affix such a label fear the power of their feelings. We hear fear in the phrase, “a flood of emotions.” And yet we all know that water nurtures life. Viewed from another perspective, thirst kills.
One of the most elemental things you can do to take care of yourself is to stay hydrated. Drink water.
There’s something else you can do. Get wet!
In many magical traditions, each of the four elements is associated with each of the four directions. Water is often associated with the West, the direction the Sun goes every day to die. The idea is that the Sun sinks into the water where it is soothed and cleansed.
The concept is extended to humans. When a person dies, it’s thought that the spirit journeys to the west, to the realm of water. And there, the spirit is soothed, cleansed, and forgiven.
As a caregiver whose spouse has dementia, you need to feel soothed, cleansed, and forgiven.
You need to feel soothed: People who know your situation will be quick to ask how your spouse is doing. Only a few will ask how you’re doing. I think they avoid the question because they’re afraid of your answer. Not because they don’t care. Because they don’t know how to help.
Water is soothing. Stand under a shower, or soak in a tub, or step into a river, or walk in the rain. As your skin gets wet, invite the water to prime the pump for your tears. Mixed emotions — and you’ll have plenty of them — those mixed emotions can dam up your tears. You need to release them.
You need to feel cleansed. I’m not talking about physical cleanliness, although caring for someone who needs help to eat, to toilet, to bathe, can create your own need for old-fashioned soap and water and laundry detergent.
No, I’m talking about the need to feel cleansed as in a fresh start, a new day, another chance to get it right. I say that because you will make mistakes. Here are three examples, all from personal experience:
- You’ll forget to put the “traveling packet” of your spouse’s meds in your purse. When you realize it’s time for the next dose, you’ll realize you don’t have the medicine and you’ll realize you’re an hour away from home.
- You’ll overestimate how much energy your spouse has. Driving two miles to the neighborhood grocery store to pick up a few things won’t take long. But if the store is crowded or someone knocks over a display of apples, or a tired baby is crying, your spouse’s anxiety can escalate to agitation in seconds.
- If your spouse is male and you have no experience with disposable undergarments for men, you might put them on backwards the first time.
You’ll also learn that the disposable undergarments are made for urinary incontinence. To date, there’s no good solution for bowel incontinence. You’ll learn that, too. You’ll learn to keep an emergency kit in the car — several pieces of disposable underwear, sanitary wipes, a full set of clothes, including shoes and socks, paper towels, and several plastic bags.
So, as you step into the cleansing water, say out loud: “I do the best I can.” Say it three times.
Finally, You need to feel forgiven. More accurately, you need to forgive yourself.
Under any circumstances, being a caregiver to someone with dementia is hard. Being a family caregiver for someone with dementia adds a layer of difficulty because the relationship has a history and the caregiver walks with one foot in the present relationship and one foot in the past.
Being the caregiver of a spouse with dementia is particularly hard. Not only are you constantly walking the liminal path between who you were as a couple and who you are now, you are also grieving the couple you will never be.
One of the steps in grieving is anger. You’ll get angry at the universe, at God, at the Force, at whatever you call a higher power, or simply at fate. You may quote Robert Browning, the poet who wrote, “Grow old along with me. The best is yet to be. The last of life for which the first was made.” You’ll quote him and swear or scream or both.
Even if you’ve never heard of Browning, you’ll know the sentiment. You’ll feel that life cheated you. You’ll look at the reality of your marriage and say this isn’t what you signed up for.
Oh, but it is. You signed up for this in the vow you made on your wedding day: “…in sickness and in health.”
Water is soothing. Now when you stand under a shower, or soak in a tub, or step into a river, or walk in the rain, don’t flinch at the truth. Alzheimer’s is fatal. There is no cure. Forgive yourself for hating the truth.
Eventually, reality comes into focus. When it does, you’ll see the road you’re on. You’ll recognize the child in each of you. You’ll see the depth of each other’s wounds. You’ll stroke the scars and cry.
Connecting with words will be a one-way conversation. Instead, you’ll connect by sharing a bowl of finger foods, or by tucking a favorite blanket around chilly shoulders, or by holding hands as Anne Murray sings, “Could I Have This Dance.”
These are gifts. They wait for you right over each hill, around each bend. You’ll miss them if you don’t accept the truth: Alzheimer’s is fatal. There is no cure.
It’s also true that if you are a caregiver and your spouse has dementia, your appraisal of the stress and strain of caregiving has a huge impact on your own mortality. Rituals can help you stay balanced, stay strong.
Finally, I’m exploring what it will take physically, emotionally, financially, spiritually to launch a second podcast. It would be about the dementia journey my husband and I are on.
Do you know the journey from personal experience, or from the experience of another family member or close friend? Do you listen to any podcasts about dementia? Do you think there’s room for one more? I sincerely appreciate your thoughts. Email: Zita@RitualRecipes.net