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Studies show that how the dementia family caregiver interprets her stress is key to her survival. I'm sharing 3 rituals I created that have helped me. I also share 3 mistakes I made in the early years of caring for my husband. He has...
Studies show that how the dementia family caregiver interprets her stress is key to her survival. I'm sharing 3 rituals I created that have helped me.
I also share 3 mistakes I made in the early years of caring for my husband. He has Alzheimer's, late stage.
Are you caring for a spouse with dementia? Have you written a book about dementia? Please let me know. I'd love to speak with you. Send an email to: zita@myspousehasdementia.com
EPISODE 7 - Mistakes and Self-Care Rituals
It’s June. Later this month, I’ll celebrate the Summer Solstice and bid farewell to the Sun as he begins his journey to the Southern Hemisphere. For those of us here in the Northern Hemisphere, the dark half of the year will begin. That idea of going into the dark is the journey we dementia caregivers take, whatever time of year, wherever we live on this planet.
Ten months ago, I published an episode titled “Self-Care Rituals When Your Spouse Has Dementia.” You have not heard that episode – unless you listen to my other podcast: Ritual Recipes. That’s where I share rituals for weddings, baby blessings, funerals, seasonal celebrations, and more. The feedback I received from that one episode is what encouraged me to create this podcast, My Spouse Has Dementia. I’m repeating most of that original episode now.
As I said back then, this isn’t an easy subject 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. But chances are good that you know someone who does.
Back then, I had just completed a course in rituals for healing and transitions. That class encouraged me to move forward to create rituals for caregivers.
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 way 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 41 next month. He has Alzheimer’s, late stage. Until six months ago, I was his only caregiver. Six months ago, I engaged the services of a CNA (Certified Nurse Assistant). She comes to my home for four hours on Thursday morning and four hours on Friday morning. In a world where the family caregiver is on duty 24/7– that’s 168 hours a week – having eight hours of help a week might not seem like a lot. Oh, but it is! So if you’re caring for a family member with dementia, start looking for help now. You’ll need time to interview agencies and potential aides. You’ll probably need more time than you think for your spouse to get comfortable with having outside help.
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:
If you’re on the caregiver’s path, pay attention to these statistics.
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, 63% of the caregivers die first, as in before the patient with dementia. That was almost 20 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. They had reviewed 17 years worth of studies about the effects of caring for a family member with dementia. They found mixed overall effects, concluding that the caregiving itself is not directly associated with an increased risk of death of the caregiver.
According to the report, the rate of caregiver mortality is aligned with how the caregiver interprets the stress and strain. I see a spectrum of responses from: “I’ve got this under control” to “I can’t do this one more minute!” As you can imagine, there’s a gulf of feelings between those two points.
Still, it’s the best news I’ve heard in a long time. It speaks to the importance of how I view the stress I’m under. Most of the time, I feel strong. But, there have been times when I’ve gone from loving compassion to anger in seconds.
I’ve come to realize two things:
That said, people are different. When I told you about the 2003 study that said 63% of dementia family caregivers die first, did you feel sick to your stomach? I did. I remember my instant reaction: I want to live. My guess is you do, too. So set yourself a goal. Simple math. 63% of caregivers die first. You want to be in the 37% who survive. Here’s a ritual to help.
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 -- not typing -- 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 didn’t read anymore. He couldn’t count money. It was dangerous for him to drive. I made arrangements for the car to have a new home.
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, duh, of course he can’t. He has Alzheimer’s. In the margin of the draft of my new will, I wrote a note to my attorney: “But what if there’s a cure?”
It took me two years to realize that I was still in denial. Alzheimer’s is fatal. There is no cure.
You, too, might be in denial. If that’s the case, here’s a ritual that might help.
Ritual #2 - Create and Destroy
Tibetan Buddhist monks have a tradition in which they create intricate, colorful sand mandals 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 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 or scary. 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 of my Ritual Recipes podcast, 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.
Rewind to that sand mandala. You don’t 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.
In caring for a spouse with dementia, you’ll experience a lot of emotions. Some of them will be painful to bear, shameful to admit. Here’s a ritual that can help.
Ritual #3: A Water Ritual
In astrology, there’s a basic understanding about the four elements: Fire acts. Earth plans. 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. Let me take those ideas one at a time...
Number 1: 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.
Number 2: 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. Three examples, all from personal experience:
You’ll also learn that the disposable undergarments are made for urinary incontinence. To date, I haven’t found a good solution for bowel incontinence. If you have, please let me know! Either way, 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, lots of 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.
Notice you’re not saying: “I want to do the best I can.” Or, “I’ll try to do the best I can.” Or, “I will do the best I can.” NO. You say, “I am doing the best I can.” You’ll feel the difference.
Finally, Number 3: 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 adds a layer of difficulty, especially if you’re caring for your spouse. Your relationship has a history and now 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 thinking about what your life will be like when your spouse is gone. Your goal is to survive.
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. How? By providing a meaningful container for your feelings, by connecting you with a community of like-minded people, by affirming the inevitable changes you’ll go through. The rituals I shared in this episode are deceptively simple. Don’t be fooled. They’re also powerful. You’ll see.
On the next episode, I’m going to tell you what has happened in the last month. My husband fell 10 times. My neighbors helped me get him up several times. I had to call the EMTs 3 times. Dick went to the Emergency Room by ambulance twice. All of the falls were dangerous. One of them could easily have been deadly. The only reason it wasn’t was because of my neighbors. I’ll tell you all about it next time. Not because there’s anything sensational… but because you need to know what could happen.
In the meantime, if you know
When I say take good care of yourself, those words aren’t fluffy. They’re fierce. We need to survive.
