Writing the Alzheimer’s Experience

We are all worried about Covid, but there’s another illness running rampant through the population. More than 6 million Americans have Alzheimer’s disease (AD). One in three of us are likely to experience dementia in old age. Paid long-term care, whether in a facility or at home, costs more than $5,000 a month and is not covered by insurance. Scary? You bet.

As most readers know, my husband Fred died 10 years ago of complications from Alzheimer’s disease. He had started showing symptoms in late 2001, five and a half years after we left Silicon Valley for the good life in on the Oregon coast. It was subtle at first, a missed word here and there, trouble with the TV remote. But eventually I was forced to move him to a series of nursing homes. In the end, he didn’t know where he was or who I was. On his birthday last week, but for Alzheimer’s, he would have been 84.

As a writer, I had to write about it. Gravel Road Ahead, my chapbook released in 2019, shares our journey in poetry form. But I have been working on a prose memoir since the early days of Fred’s illness. It has taken many years, with more than one complete rewrite after I thought it was finished. This summer I embarked on another rewrite, working with an editor who has helped me see new possibilities and forced me to dive deep into the dark days, recreating the scenes with dialogue and details. Last week I finished that revision (for now) and started sending out my proposal and sample chapters to agents and editors.

People who aren’t in the book business keep expecting to see a published book any minute, but it’s a long process. Writing it is just Step One.

One requirement for a nonfiction book proposal is an annotated list of other books on the subject, with a few lines explaining why my book is better/different/worth sharing shelf space with them. As a result, I have read so many books on Alzheimer’s they’re all blurring together in my head. Each one forces me to relive my own experience with Fred and other loved ones.

Here are two I read last week.

Ann Davidson’s Alzheimers: A Love Story: One Year in My Husband’s Journey, published in 1996, is a beautiful love story that takes place in the Bay Area, familiar territory for me. Her husband Julian, a renowned Stanford professor, can no longer read or write or speak intelligibly. He can’t work anymore, but he feels as if he should be doing something. Ann struggles to keep him entertained and safe, but it isn’t easy. Still, there is so much love, and there are joyful moments.

In Susan Straley’s Alzheimer’s Trippin’ with George, one in a series of three books, Straley’s husband has similar problems, but her series of books compiled from her Trippin’ blog is a bit different. She and George are recumbent tricycle enthusiasts, riding alone and with their friends all over the country. Even deep into AD, they continue to ride. When George can’t operate his own trike anymore, they get a tandem one where she provides the muscle and direction. Her patience and strength are incredible. There are grim moments but many laughs, too. You might want to check out Straley’s blog. She’s a lot of fun.

I have more AD books to read, including newish books by Glen Campbell’s wife Kim and Ronald Reagan’s daughter Patti Davis. I’ll let you know how they are.

Check out the AlzAuthors group as well as the Alzheimer’s Association for book lists and more.

So many AD books have already been published, including many offering diets, exercises, and other techniques that allegedly cure or prevent AD (they don’t) and many offering help for caregivers. Does the world need another AD book? I hope so. Mine is about a lot more than Alzheimer’s, and I really want to share Fred’s story, preferably with a publisher who will do it justice. Fingers crossed.

Dementia is awful. I have seen too much of it with my family and friends. If you are going through it, big hugs to you. Let’s pray the latest drug breakthroughs provide relief so that future generations won’t have to worry about it.

Meanwhile, has anyone in your life been diagnosed with Alzheimer’s or another form of dementia? Would you be interested in reading the story of our journey through AD? Please share in the comments.

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Driveway camping: an Alzheimer’s memory

Today I’m offering a memory from my unpublished memoir about our years dealing with Fred’s Alzheimer’s disease and other problems. This took place when he was still at home. Although his memory was fading, he had blessed moments of clarity. Tomorrow would have been our 36th wedding anniversary.

Our truck was the same as this, only blue. We gave it away after Fred stopped driving.

On a sunny August afternoon, I crawled into the shell on the back of our old Mazda pickup. In 12 years, I had never gone in there except to get something, the ridged truck bed bruising my knees. But now, sun-cooked and pooped from washing the new car, I opened the hatch, scooted toward the cab and lay back.

I had never noticed that the inside of the canopy was silver. I had also never noticed there were screened windows I could open for air. All this time I’d been thinking that someday, after Fred’s Alzheimer’s took him away, I would buy a nicer truck and camper like my parents used to have. This canopy was just the cover Fred had bought to protect the supplies he carried around for his tax preparation business.

Now I realized I already had a camper. It wasn’t fancy, but I could lie all the way down in it, and I could even sit up. Add an ice chest and a guitar and off I’d go.

Fred came out.

“I’m camping,” I said. Looking out at the coastal forest in which we lived, I announced that I might stay there indefinitely. I could bring my phone and laptop into the camper and put a big sign on the side of the truck: Writer on the Road. I felt like a kid who had found a special hiding place.

Fred sat on the tailgate. We talked about the truck, about how we had never camped together. We talked about how my friend Sherri and I used to sit on the tailgate of her father’s station wagon talking for hours and how I spent most of my free time at her house because we had too many rules at mine. Fred said they had no rules at his house. They could do anything they wanted.

We talked about my upcoming business trips, Fred’s need for care, the frustrations of Medicaid, what we might do in the future, and how I would live without his income. He got teary. “It’s not fair to you,” he said. “Just get rid of me.”

I placed my tanned hand on top of his white one. “No. It sucks, but I made a promise to take care of you, and I’ll stick to it.”

Perhaps I shouldn’t have discussed finances with Fred. But he seemed to want to know in this unusually lucid moment. So I told him everything I knew, including my resolve to stay away from government funding as long as possible. He said he was worried about my future “when I’m not there.” So was I. But we had to take it one step at a time. And right now, I was having fun camping in our driveway. Perhaps I had gone completely insane. If so, it was fun.

My brother and I camped with our parents when we were kids. We all slept in a 13-foot Shasta trailer at first, with one of us kids suspended in the canvas bunk over the double bed and the other in a sleeping bag on the slippery bench seat in the dining area. In later years, Mike and I moved into the camper on my folks’ pickup. It was nicer than this, padded and paneled, with beds, cupboards and a refrigerator. Fred laughed as I explained that my folks had an intercom so we could talk to them, but when I got to whining about my little brother pestering me, they would shut it off. “Mom, Mike’s—” Click.

I’d sit with my head against the window and my transistor radio against my ear, singing along. In those days, I knew every song and artist on the playlist.

I inhaled the pine-scented air. Good times.

But I never kissed a handsome man in that camper. Now I planted a long, passionate smooch on Fred’s soft lips.

Good times.

Maybe I would keep this rig after all.

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The Ducks Quacked, We Said ‘I Do’

Wedding3_0002It was a spring day like today, blue sky dotted with white clouds, a slight breeze, everything in bloom, as Fred and I hustled to prepare for our wedding. The second marriage for both of us, this was a do-it-ourselves affair. We were already living together in a house on the next block from my parents’ house. I had cooked raviolis the night before for our rehearsal dinner. We were having the reception in our back yard. I put on an embroidered dress from Mexico while Fred donned a Mexican wedding shirt. No tuxes, no ties. My bridesmaids wore knee-length ruby red dresses they could use again. Instead of hiring a photographer to follow us around, we gave our friends rolls of film and told them to take lots of pictures.

Our wedding took place 30 years ago today in an amphitheater beside a pond at Evergreen Community College in San Jose, California. As Rev. Carl Stocking led us through our vows, ducks quacked and a fishing competition took place nearby. We walked in to Pachelbel’s Cannon playing on the boom box. My father escorted me down the “aisle” for the second time, hoping this marriage would stick. While I felt faint and had an uneasy stomach during my first wedding, this time I felt only joy, which I saw mirrored in Fred’s face as we pledged to our lives to each other and came together in one of those famous Fred hugs.

Afterward, we adjourned to our yard, where Fred and my dad had set up tables and chairs borrowed from the recreation department where he worked, with blue plastic canopies from Mel Cotton’s sporting goods shop for shade. Our friend Pat Silva had prepared a Portuguese feast for us, with pork, beans, fruit, salads and more. We rolled my piano onto the patio, and Scotty Wright, our favorite jazz musician, provided music. Dancing, feasting, drinking, talk and laughter ensued as two families, Lick and Fagalde, became one. Recreation workers, journalists, Fred’s kids, my cousins, and so many more partied till sunset. It was the best wedding ever.

Looking at the pictures, it’s easy to feel sad. So many of those people are gone now. Fred died four years ago. On our 25th wedding anniversary, he was living in a nursing home and didn’t know who I was. Horrible. But I need to cling to the good memories of that day and the many anniversaries that followed. In addition to working for the city of San Jose, Fred was a licensed tax preparer. Everything went on hold from January through April, but come May, we would take a vacation. We traveled far and wide, celebrating anniversaries in Canada, Hawaii, Costa Rica, cruising the Mississippi River on the Delta Queen and many other places. Each year, we would remember this day and pledge our love again. It was a good marriage from beginning to end.

Thank you, Fred. Thank you everyone who was there. Cheers!

S is for . . . Shoes Full of Sand

Long before I wrote a book titled Shoes Full of Sand, I wrote a song by that name. It was inspired by my then-new love for Fred Lick. Our first date took place just before Christmas. Dinner and a movie. Then Fred went to Southern California for two weeks to spend the holidays with his family. After only one date, we were already in love. We agreed to meet in Monterey.

I arrived first. I remember looking for him by the carousel, walking down the steps and seeing him coming toward me. Just like in the movies, we flew into other’s arms. We spent a magical weekend at the beach, where every moment confirmed that we were meant to be together. That was 1984. We were married in May 1985 and lived in San Jose, where Fred finished out his career with the City of San Jose’s recreation department and I worked for several newspapers, ending up as editor of the Saratoga News.

In 1996, we moved to Oregon. We both wanted to live by the beach, and here we could actually afford it. We longed for those shoes full of sand.

Tomorrow is the third anniversary of Fred’s death of complications from Alzheimer’s Disease. We never suspected back in 1984 that our lives would take such a turn. As I dig my feet into Oregon’s cool gray sand, I hear “Shoes Full of Sand” playing in my head again. I recorded it for you the other day. Dressed up, arranged the perfect background, repeated it till it was perfect. Unfortunately, that computer is in the shop today with a virus, so I tried it a capella on my phone. Note the dog helping in the lower right.

I’m participating in this month’s A to Z blogging challenge. S stands for “Shoes Full of Sand.” My alphabetical posts are distributed among my various blogs. Here is the schedule:

‘Zits’ and ‘Magnificent Bastard’

There, did that title get your attention? Zits is main character of the book I just finished reading, Flight by Sherman Alexie. It’s fast, it’s quirky, it’s fun, and it made me cry on the last page. The perfect book.

Now I’m reading Rich Hall’s Magnificent Bastards, a collection of short stories that knows no boundaries. Ever wonder what a werewolf does when he’s in the mood for Chinese food? Or what happens when a verbally impaired boyfriend decides to compile Google search results into love poems? These are fun stories.

On the personal side, my husband has made two more trips to the emergency room at Albany General. His surgery two weeks ago is not working out so well. He seems to be deteriorating quickly. I honestly don’t know what will happen next. Prayers appreciated.

Update on the ongoing family crisis

I don’t want to burden you with my troubles. I like to keep this site light, but you may notice my occasional absence or wonder whatever happened to the husband I previously wrote about. So, briefly, here’s the story.

Fred, who has Alzheimer’s Disease, is having a very hard time, and subsequently, so am I. When you’re together this long–27 years–and love so deeply, what hurts one hurts you both.

In the past month, Fred has been to the hospital five times. He had surgery a week ago, and was moved, unconscious, the following day to a skilled nursing facility. His condition has drastically deteriorated in the last few months. When I visited yesterday, the first day I saw him awake since the surgery, he could not speak, could not feed himself, and could not walk on his own. He has lost 25 pounds since Christmas. He has become one of those zombies who sits in his wheelchair and dozes or stares into space. The surgery, related to a failed bladder, appears to have been successful, but we don’t know what will happen next. It’s one day at a time. Complicating matters is the fact that Fred is in Albany, Oregon, and I’m on the coast. I’m spending an average of 3 1/2 hours per trip several days a week driving on a long, windy road.

It was only nine days ago that Fred was still able to say “I love you” to me and knew my name. It may have been the last time.

I’m signing off before I get more maudlin. Alzheimer’s is a horrible disease, the sixth most common cause of death in the United States. As the boomers age, the number of people with AD is growing. For information, visit the Alzheimer’s Association website at http://www.alz.org/.

Anyway, that’s what’s happening. Please appreciate every little thing you can do all by yourself and all the many blessings that fill every day. Thank God Fred loved his life and his glass was always not just half full but full to overflowing.

Is This Fair?

Fred, my husband, burst into tears when he saw me yesterday. At the time, he was in his bathroom at Timberwood Court Memory Care Community with a nurse and an aide. They were trying to reattach his catheter bag so it would be more comfortable. It wasn’t working. In fact, in the past 24 hours, both the tube and the bag had broken, spilling urine all over and freaking everyone out. Meanwhile, the urologist they contacted has decided that because Fred has Alzheimer’s, there’s no point in examining or treating his enlarged prostate. He’s supposed to suffer for what could be years because his mind is muddled?

The beginning of 2011 has not been much fun for Fred–or for me. He went to the hospital on New Year’s Eve with intense pain. No one knew what was going on because he can’t communicate. After a belly CT, the doctor announced that Fred’s bladder was greatly enlarged with unreleased urine; it was blocked by an enlarged prostate. A catheter was installed and more than a liter of urine was drained out. Fred seemed much more comfortable, but then he started shaking like crazy and had a seizure right there in the ER at Albany General. Now the doctor sent him out for a head CT and ordered that he stay in the  hospital overnight. Fred may have had other seizures in recent times; we’re not sure about those, but this one happened in front of the doctor, so we’re sure about this one.

He went into a long deep sleep after the seizure. Meanwhile the hospital doctor determined that because he has Alzheimer’s she would not order any tests to explore the seizures. She would give him drugs and send him back to Timberwood the next day.

Once Fred woke up, he was fighting the catheter, fighting everything everyone tried to do for him, and shaking so badly he could not feed himself. He was speaking nonsense words, his speech much worse than it had been a week ago, but they discharged him, and now the urologist is declining to see him. Luckily the nurse at Timberwood is a fighter and she will get a doctor somewhere to take him in. Meanwhile Fred is in a constant state of panic and pain.

Prostate problems are common in mature men. Normally, they see a doctor, who examines them and treats them, either with surgery or medication. But not Fred; he has Alzheimer’s. As for the seizures, the doctor at the hospital said they would normally order an EEG and MRI to find out what’s going on, but not Fred; he has Alzheimer’s.

Is this fair? Send prayers.

A special Christmas gift: sight

It’s three days before Christmas. The rain has stopped, replaced by blue sky and white clouds. Small branches litter the lawn, and my beloved blue hydrangea is nearly naked, its leaves blackened and shriveled from last month’s snow and blown off by recent windstorms. It’s cold and wintry, but it’s still so pretty here I could just look at the view out my window forever. One of the great blessings of living here on the Oregon coast is that we have four distinct seasons, and they are all beautiful.

Earlier this month, I had surgery on my left eye to deal with a cataract and remove a growth that had sat on the edge of my iris for ages. It went well, with some pain afterward but nothing dramatic. After two weeks of dealing with unmatched eyes–the fixed left one and the nearsighted right one– I picked up my new glasses yesterday. I can see better than I remember ever seeing before. Last night, as I looked up at the bright moon and the trees silhouetted against the sky, I saw my first stars since the surgery. What a blessing. I felt like I could just stand around looking at things forever.

Out my window, a tiny brown bird perches at the tip of a leafless alder branch then zips across the yard and over the roof. From the next block, I hear a neighbor hammering. Across the street, another neighbor has hung out his orange slicker to dry.

Today, the day after the winter solstice, we will have slightly more daylight than we had yesterday. As dusk falls, Christmas lights will appear all around. I have lights on my little tree and around my windows. I can look out at the neighbor’s multi-colored lights wrapped around his roof and bushes. Down the road, two families have gone all out, with inflated snowmen and Santas and sheets of lights everywhere. When I make my treks down Highway 20 to visit my husband in Albany, I see lights hanging from mansions and rustic cabins, brightening the way through the rain and snow.

A sad note: My husband is not doing well this Christmas. He has had several worrisome events lately. He is pulling more and more inward as his abilities fail. Alzheimer’s is a terrible disease. Unfortunately, most of us seem to have someone in our family with this illness. They may forget you, but don’t forget them or their loved ones this holiday season.

Meanwhile, as I sit here typing, the clouds have thinned, revealing more blue sky. Two bright blue Stellar’s jays soar from my Sitka spruce to the Douglas fir next door. My dog Annie sits gazing out, eager to go for her walk.

There is so much to see!

Whatever your situation, look up. Find the blessings and be thankful. I wish you all a wonderful Christmas and a blessed new year.

When in doubt, sing

Fred and I are alone in the TV room at the nursing home. I can’t get the television to work—too many buttons and accessories. I have run out of stories, and no activities are scheduled for another hour. The other residents are still in the dining room finishing lunch.

Before I left home, I prayed, asking whether I should bring the dog to help me entertain my husband or my guitar to play some songs. But the message I kept getting was “neither.” Now here, I know the dog would have been too disruptive during today’s early lunch, and putting on a performance would have kept me from focusing on Fred. I have made this extra trip because Fred was in a bad way yesterday. He started the day hollering and hitting people, then spent the rest of the day weeping. I didn’t know what I would find today, but God told me, “Just bring yourself.”

So now I sat with Fred on the plasticized sofa staring at a blank TV. I stroked his age-mottled hand, rubbed his white-stubbled cheek. He was in a good mood, but I feared he might start to cry in this long silence. I took a deep breath and began to sing “Dashing through the snow . . . ” Immediately this man who can’t form a sentence started singing a perfect bass accompaniment to my soprano melody. We went from “Jingle Bells” to “Jingle Bell Rock” to “Santa Claus is Coming to Town.” I went through every lively Christmas song I could think of. With no sheet music to rely on, I occasionally mangled the words, but it didn’t matter. Our two voices connected us in a way that nothing else could. We both felt the magic.

At last an aide came to make the TV work, and we settled in to watch an old episode of “Gunsmoke.” But the music lingered in the air.

On the night we met 27 years ago, I was singing. Music remains the shining thread that holds us together in spite of Alzheimer’s Disease. God gave me a voice. When in doubt, I must sing.

Balloons in the Bedroom

Two balloons float near the ceiling of my bedroom. The one with pink roses says, “Happy anniversary.” The other one, showing a bear holding a bunch of balloons against a blue sky, says,”Hang in there.” On the dresser nearby sit an African violet plant loaded with purple blooms and two cards filled with handwritten messages from the people who sing in our choirs at Newport’s Sacred Heart Church, where I’m one of the music ministers.

I am so grateful for their love and support, even though tears stream out as I read their words. On May 18, my husband Fred and I had been married 25 years, but Fred, who has Alzheimer’s Disease and lives in a nursing home, didn’t know who I was. I had come with our wedding photo album, hoping to share our memories, but he didn’t understand that he was married to me. He looked at me with the eyes of a stranger. I can’t begin to describe how much that hurt. I held my tears until I left. Driving toward home on Highway 20, I cried so hard I thought I would break.

Eventually I found some peace, and Fred did know me on Sunday. This disease is crazy, cruelly giving and taking away. Sometimes I get my love back for a little while. It will never be the way it was, but we have to treasure the moments we get. It is so precious just to sit holding hands or hugging and saying, “I love you.”

I had mentioned the anniversary to my church friends, noting that my family had let the day slip by unnoted. Last night at choir practice, they surprised me with their gifts. If I seemed to not react at the time, it’s because I was stunned and trying not to cry. But I went to sleep surrounded by their love, and when I woke up, it was still there. It means so much to me.

I guess sometimes the most loving family is the one you find for yourself.

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