Anticipatory Healing - What Family Dementia Caregivers Need to Know to Survive

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You probably know about anticipatory grief. Unbidden, hidden and immediate, it comes with the diagnosis that your loved one has Alzheimer's. Depending on when the diagnosis was delivered, it can be several years or more before your loved one dies. I've come to believe that something in addition to anticipatory grief, can also happen along the way, especially in those devastating late years. I call it ANTICIPATORY HEALING, and that's what this episode, number 21, is all about.

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0:42

Your listening to my spouse has dementia, a podcast that uses personal stories, occasional interviews and simple rituals to support dementia caregiving spouses. My goal is to help us survive, because about 40% of us die first. I'm Zita, Christian writer, life cycle celebrant, widow. My husband had Alzheimer's.

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1:13

Anticipatory grief disappeared the day my husband died. That was two years ago today. That's also when traditional grief appeared. I've come to see that grief in three stages. I've also come to identify what I call anticipatory healing. These traditional grief divisions are my own descriptions. If you're still an active caregiver, you might say my observations about grief don't apply to you, at least not yet, and maybe so, but I've survived the dementia caregiving odds, and I want you to survive too. That's where anticipatory healing comes in.

2:03

These days, caregivers can easily find information about the stages and symptoms of Alzheimer's. We can also find suggestions about what we can do to help our loved ones. Having that drone's eye view of our situation is helpful, even as we frantically scan the landscape for details that reflect our caregiving situation. I need to widen the lens on what I've experienced, so that my thoughts on anticipatory healing will make sense. So bear with me.

2:40

Here are the details of my landscape. I call my first grief stage.--that's grief stage number one--I call it REACT.

2:52

In the first six months after Dick died, I didn't have the time or the desire or the ability to think. My actions were robotic. I focused only on what was right in front of me. That meant the funeral, coffin, headshot and the obituary. I had to pick out a cemetery plot. Dick wanted a traditional burial. We talked about that when he got the diagnosis, he said, promise you won't burn me. And I replied simply, I won't. Two words, and I choked up. In my promise to him was his assumption and mine that I would survive him, that someday I would be making that decision.

3:51

The cemetery isn't far from our home. It's centuries old, with very few plots left, none at the top of the gentle hills or beneath the many big, stately trees. So I chose a plot based on its number. It sits right next to the cemetery road. I had some misgivings about that, until the cemetery manager pointed out that I could visit Dick's grave in the dead of winter and not have to get out of the car. This is New England. We get a lot of snow, and that proved to be an excellent idea.

4:31

Buried into my choice of plot was my assumption that I would survive to visit Dick's grave in winters to come. I purchased the headstone two weeks after Dick died. It was his birthday. It somehow just felt right. I had my name engraved on the stone too. I figured that when my time came, that would be one less thing my daughter, Laurie, would have to deal with. In that decision was the feeling that I will never open my heart to another love. I say, a feeling. But you know some things. You just know. And I know you get it, notice that I'm also seeing myself in the future. I see myself surviving.

5:27

I also had Dick's last words to me engraved on the stone. He hadn't spoken coherently in almost a year, certainly not a full sentence. But a few days before he died, he said, clear as a bell, "I have a lot of love for you today."

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5:46

This past Christmas, one of the gifts Laurie gave me was a set of number two pencils. As she handed me the package, she said, it's just a little something, mom. She'd had the pencils printed with Dick's last words. Far more than a little something! I use those pencils sparingly. I want them to last a long time.

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6:12

And for sure, there were more zombie-like tasks. In those first six months. I had to notify Social Security, the bank, the utilities, our health insurance company, the pharmacy, Dick's doctors, the credit card company.

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6:28

There were personal tasks too. I took out all of Dick's personal things from our bathroom. Can I just tell you it felt so strange to throw away his toothbrush.That's so often the symbol of commitment, when one person decides to move in with another person. You know the phrase, don't forget to bring your toothbrush. Or, oh he brought his toothbrush. You know, it's serious.

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6:54

And then there were the sheets for our king-size bed. I went back to using plain cotton.They were colorful, for sure, but old, soft and lightweight. I'd been using heavy flannel year- round. Dick was always cold. So I washed all the flannel sheets and stored them high in the linen closet. It occurred to me that I might feel sad when the weather turned cold enough to use them again. I imagined unfolding the sheets, releasing faint traces of the frankincense and myrrh laundry soap I use. And that prediction proved true.

7:35

Simple things triggered tears. They still do. I remember looking for something in the food pantry and seeing oatmeal and Cheerios --Dick's favorites. I remember buying the heart shaped Cheerios, thinking that maybe Dick would remember, you know, who we were. And then there was a television streaming service. I turned it on and saw the familiar screen that asked who's watching? The options were, Nana, that's me, or Pepe. That's what our grandson called Dick. I see Pepe and I remember how we loved to watch UConn women's basketball. Three, maybe four, years before Dick died, I found several Appalachian Trail hikers who were filming their trail experience and posting the videos on YouTube. Dick and I followed several hikers for months. He seemed to enjoy it, until one day he said, abruptly and firmly. I don't want to see that. I turned off the television

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8:48

in those first six months. I also had to find an estate planning attorney and get the probate process started. I had been a legal secretary for 17 years, but not in the field of trusts and estates, and I wasn't at all familiar with probat. Even if I were, I lacked the mental energy. I was empty in a whole new way. Back then, my daughter called every day she came to visit at least one or two weekends every month, while she was here, she would often fill her car with the bags of Dick's clothes that I had piled by the front door. I couldn't bring myself to actually get rid of his clothes.Before I packed everything, though, I washed all the pieces in my frankincense and myrrh laundry soap. I hoped that whoever wound up wearing those sweaters and sweatpants, shirts and socks and silky thermals would somehow feel the love that Dick and I shared

9:55

some kind of wishful thinking. Yeah, maybe,

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9:59

but Dick would often look at a stranger in the grocery store parking lot, comment on the man's shoes or his clothes or his car, or how many bags of groceries he'd purchased, and then Dick would make up a story about the man -- what kind of childhood he had, what he did for a living, what plans he had for the evening. Would he sit down at a table with his family all around, or would he eat by himself in front of the television? So yes, I made up stories about the men who might detect a whiff of fragrance long associated with healing, with the Spirit, with all things sacred, like love.

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10:45

There's a reason many financial planners advise people who have lost a spouse to wait at least a year before making any big decisions like moving or changing a job. There may be reports that we receive only once a year, tasks we have to do only once a year, opportunities that come only once a year. That lens is too wide to explore in the first six months of grief. That's all part of what I call my grief stage number two, where I called stage number one react. I call stage number two REALIZE.

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11:28

Before he got sick, my husband was an avid hiker. He summited peaks in the Rocky Mountains, Canadian Rockies, the White Mountains in New Hampshire and lots more. In 1999 he thru-hiked the Appalachian Trail, 1260 miles from Georgia to Maine. It took him six months. My grandson, Logan, is an Eagle Scout. He took Dick's hiking poles and the backpack with all the patches I had sewn on. He had friends who could use a tent, a sleeping bag, a stove and some of the other gear. So I know they went to good use.

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12:06

Laurie took the snow shoes. If you never seen them, they look like giant tennis rackets that attached to your boots. One December, Dick had used them to stamp out Merry Xmas in the snow that covered the meadow behind our home. I hung out an upstairs window so that I could see the big picture and direct his steps. I took pictures and to this day marvel at the balanced formation of his letters.

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12:36

I kept Dick's hiking boots. I don't know why, except that they trigger so many good memories. On September 27 of 1999 I got up really early and drove seven hours to Baxter State Park in Maine. I knew Dick would complete the trail that day. The defining experience of his life would be over.

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12:59

We stayed at a bed and breakfast that night and drove back to Connecticut in the morning. That evening, when we pulled into the driveway, we saw this great big piece of white poster board nailed to the space between our garage and that of our neighbors, Roger and Terry. In big green letters, the sign said, Welcome home, Dick, from hiking the Appalachian Trail. You see, Roger had taped a map of the Appalachian Trail to a wall in their dining room. He used thumbtacks to mark Dick's progress, something he knew because I had been keeping an online journal on a website called Dick takes a hike.com. My friend Mike Southern had built that website. Website technology was so new back then, people who knew about websites had suggested that I put one up to track Dick's progress, but at the time, I didn't know how to send an email to more than one person at a time, much less build a website. I will be forever grateful to Mike. He did that as a favor to me. Roger had gotten some of the neighbors to sign the poster, and a week or so later, I had a welcoming home party for Dick those people added their signatures. All in all, there were more than 30.

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14:24

In all these years, most of those signatures have faded, but not the memories. I saved the poster. I came across it when I was gathering things to display at Dick's funeral. While he was on the hike, people emailed me from France, Africa, Guam and all over the United States. Like Roger, they were following my husband's journey. Some shared their own plans to hike the AT "someday." Every September 27 Dick and I would have a glass of wine, and I would read those emails to him. I've since hung that poster in the garage where I can see it every day. I realize on a level far deeper than ever before, that my husband touched the lives of a lot of people. He inspired them to dream long before he went on his first big hike.

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15:18

Dick had another all consuming hobby. He entered sweepstakes. Every year, I gave him a new three ring binder, a big one. I filled it with plastic sheet protectors. He kept all of the congratulations letters that came with the prizes he won. When he died, he had filled more than 30 of those binders. He used to subscribe to a newsletter called Sweepsheet. It listed dozens of sweepstakes, some national, some regional. In the online forum, the subscribers shared their sweepstakes that they had discovered, and they announced their wins. Every year, on January, 1, Dick posted a poem he had written. It was called A Sweepstaker's Creed. I think of it as his ode to optimism. Over the years, he revised the creed several times to reflect the way technology had changed the hobby. I typed the poem for him, always updating to reflect the current year, Dick would stand next to me as I attached the poem to an email and sent it to Patty, the woman who ran Sweepsheet. Dick loved it when fellow sweepstakers would say something about the poem in the group forum. He would beam to read even a simple message of the annual tradition we posted that poem for, oh, I'm gonna say at least 10 years. New Year's Day of 2017 was the last time I called Patty later that year to explain that Dick had Alzheimer's and we wouldn't be renewing his subscription to her newsletter. I asked her to let the other subscribers know so that they wouldn't look for the poem. When January rolled around, Patty asked if she could post it. She said, so many people looked forward to it. And I said, of course. So here's the poem, and I realized that you are probably not sweepstakers. But as you listen, I want you to notice how my husband anticipated winning.

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17:28

"A Sweepstaker's Creed by Dick Christian: I am a sweepstaker, and this is my creed, to enter all sweepstakes for pleasure, not greed. To faithfully follow all of the rules, using paper, pen and computer as my primary tools. I firmly resolve that I will try the sponsors' fine products when I buy.To send them a letter with my thanks soon after depositing their checks in my banks. I'll be supportive of my peers.When they win, you'll hear my cheers. I'll never quit. I'll always keep trying. My favorite newsletters, I'll keep right on buying. I'll enter daily until I win, and then I'll enter again and again. I am a sweepstaker. You now know my creed. Hard work and some luck. That's all that you need. Happy New Year, January 1, 2017."

18:31

Optimism is a trait that Dick and I shared. I'm not talking about pie in the sky, armchair dreaming. I'm talking about having hope when all seems lost. I'm certain that's one of the reasons we were attracted to each other. See, when I was 15, my mother died. I had two younger sisters, Laurie 12, Eileen 10. Our dad was in the Navy and had been gone for most of the previous two years. We weren't very close to him. When I learned through a neighbor --who had reason to know-- that we might be split up and sent to foster homes, I told my sisters that if we obeyed all the rules our military dad laid down, if we got good grades in school, if we pretended to be happy, we'd have a chance of staying together. As a child, I saw hope in conforming.

19:30

Dick didn't have an easy childhood eithe. One of six children, he and his little brother, Albie, slept on a pallet of blankets on the second floor of a house that was all but falling down all around them. Friday nights meant listening as their parents would get drunk, scream obscenities at each other, physically fight, throw things across the kitchen. Albie, who was about six, would cry, Dick would put his arm around Albee's shoulder, tell him to go to sleep, that the fighting wouldn't last forever, that their parents would sleep it off, and that everything would be okay in the morning. As a child, Dick found hope in pretending.

20:17

Whether through conforming or pretending, we both imagined that our lives would somehow get better. Of course, painful things still happened. That's life at the end of the first six months after Dick died, a woman from hospice called me. Hospice offered an eight week bereavement program. She thought I might find it helpful. Theonly reason I agreed to go was to gather information for my dementia support group. I had taken over the group when the organizers had to discontinue it. It didn't take long for me to realize that had I not stayed involved with the support group, pride might have kept me from joining the bereavement group, and that would have been a big mistake.

21:05

In that bereavement group, I saw my own pain reflected in the eyes of other women who had lost a spouse or a parent or a sibling or a best friend. Whenever one of us dissolved into tears, the others silently held space for us to simply feel. We all knew how ineffective words are. At such a time when the group started, there were 10 of us. When the eight weeks were over, we were down to five. We decided to continue meeting on our own. It's been about a year and a half now, and the five of us still get together once a month.

21:47

In that time, several women have traveled, one of them totally on her own. One woman funded a scholarship in her late husband's name. Another found a good home for her late husband's massive collection of tools. Another woman set some healthy boundaries with family. I told them about my vision for a new website, something I'd wanted to create for a long time. I met with them earlier this week. We noticed that for the first time in the 18 months that we've been meeting, we laughed, and I'm talking deep from the belly laughs. And it felt so good.

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22:32

I continued to find hope in that community of women. In watching each other heal, we heal ourselves. The steps of healing are often so small we don't see them as anything but evidence of change. Somewhere in these past two years, I realized that I'm not doing laundry every day. I'm not buying jumbo packs of paper towels. I realized that taking out the trash every day, breaking down the cardboard boxes for a weekly recycle pickup, hauling the garden debris to the dumpster, winding the grandfather clock on Sunday. These are tasks that are now part of my routine, my routine. I also realize that when I wake up in the middle of the night, the comforting shape I see on Dick's side of the bed is coming from the two long pillows I put there every night. More than 40 years of life as I knew it is over.

23:40

So now the final stage. Let me refresh. I call my grief stage number one, REACT. I call my grief stage number two, REALIZE. Grief stage number three is what I call REFLECT. And that's where I am now, in all likelihood, you started grieving the day a neurologist diagnosed your loved one with Alzheimer's. If you didn't know it then, you found out pretty soon that Alzheimer's is fatal and that there is no cure. The diagnosis starts the clock called anticipatory grief, and that kind of grief is real. As I said in the beginning of this episode, I think there's another clock. I call it anticipatory healing. It's not handed to you. You have to build it.

24:41

These two clocks don't run concurrently, at least not in the beginning. The healing clock might not even start running until you're deeply mired in the muck of caregiving. That's when you glimpse your future. You aren't seeing a six-year plan with 25 steps all laid out in an orderly fashion. No, You might be in that point of the caregiving journey where you can't plan a day in advance, much less six years-- the average life-expectancy in the United States following an Alzheimer's diagnosis. How you'll get from now until then is a mystery.

25:24

Plus, people are different. Your loved one might not live that long, or might live considerably longer. I remember standing in the living room, a roll of paper towels in one hand, a bottle of urine cleaner in the other. I was so frustrated, I muttered under my breath, I won't miss this. In that moment, I acknowledged that my husband was dying with a finality I had not fully accepted. The pang of that truth latched on to me the way the burrs of some plants will stick to your clothes when you walk by.

26:10

Consider the day the neurologist diagnosed your loved one with Alzheimer's. It's probably the same day that neurologist defined you as the caregiver. You might not acknowledge that right away, either, but in time you do.You might live that caregiving role for six years, more or less. You learn about the symptoms and the stages of Alzheimer's.

26:40

What about the symptoms and stages of caregiving? The Alzheimer's Association website points out that in the early stages, the caregiver role is that of gathering information. As symptoms progress, the caregiver role is that of providing support.With further progression of the disease, the caregiver role extends to preserving the loved one's dignity and quality of life. Because people are different and not every Alzheimer's patient experiences all of the same symptoms, the caregiver's tasks will vary accordingly. Now this is important. I'm not in the medical profession. I have no professional qualifications for what I say on this podcast, other than my husband of 41 years and 8 days, a man I loved deeply, died of Alzheimer's. I cared for him, 24/7 in our home, and I survived.

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27:51

When I reflect on the unfolding of my experience as his caregiver, I think of what astrologer Caroline Casey often says,: "Imagination lays the tracks for the reality train to follow." Her words speak to the power of our imagination. When I chose the cemetery plot, I did so with the assumption that I would live to visit my husband's grave, even in a New England winter. When I had Dick's last words to me engraved on the headstone so that I would never forget them, I did so with the assumption that I would live for a long time. When I imagined unfolding those flannel sheets, I assumed that I would live to experience more winters. I had similar little visions while I was caring for my husband. I saw myself going for daily walks with the women in my neighborhood, meeting weekly with my writing critique partner, Sharon, at my local Barnes and Noble. I imagined how good it would feel to attend a Writers' Conference, something I used to do several times a year. Yes, I had mixed feelings about each one of those visions. Still, it was with these little visions that I imagined and built my anticipatory healing clock.

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29:13

We, all of us, we have certain beliefs. They shape our thoughts, and then those thoughts create our words, and our words fuel our actions. Our actions, the things we do or don't do, they define our character. That cycle isn't something I use only when writing fiction. I see that cycle in every aspect of real life. Wherever you are in the dementia caregiving journey, imagine your world several years from now. The fact that you can create that vision suggests the belief that you can see yourself surviving your caregiving experience. Yes, your future will hold grief. It could also hold the gifts of having inner strength, setting wise priorities and enjoying loving memories. Those gifts grow from our beliefs, our words, our actions. They are the components of anticipatory healing. Hold that vision while I say: Take good care of yourself. Those words aren't fluffy. They're fierce! Because we need to survive.