Writing Through Challenges & Change

I Am Disappearing

He said it out of the blue. We were at home, probably about a month before he walked out of the house that fateful night in January 2019. I was gazing into the refrigerator trying to decide what to make for lunch. He had become quite a fussy eater over the duration of his disease, and I was lucky that he at least liked grilled cheese or peanut butter and jelly sandwiches, items that were super easy for me to make. He was funny; he would get stuck on something and then that would be all he wanted. Like Chili’s baked potato soup. He loved that soup. We got to know many of the servers at our local Chili’s, and sometimes when they saw us, they’d already have a bowl, hot and ready for him, by the time we were seated.

Standing in front of the refrigerator, I was contemplating forgetting the cheese or peanut butter sandwich and hopping into the car instead for Chili’s. Jim may have been stuck on his baked potato soup, but I had the luxury of choosing anything I wanted, and right now one of their salads sounded inviting. And then Jim threw me a curve.

“I am disappearing.”

He had come up behind me and said it matter-of-factly, but I instantly felt the magnitude of his words – and each one ran a separate knife through my heart. Through my soul. He said it again.

“I am disappearing.”

I thought I might explode into tears, and I didn’t want that. I quickly took his hands. “YOU are not disappearing. Not to me … not ever to me.” I hugged him hard, right inside the open doorway of the refrigerator. Despite my wishes, the tears were building up behind my eyes, and I quickly moved back and closed the refrigerator. “Hey,” I said, turning, “let’s go to Chili’s for lunch. How ‘bout that? I’ll go grab my purse.”

We did, and he downed two bowls of potato soup. But I, I barely touched my salad. I watched him eat his soup, his entire focus on the task at hand. He never looked up, he never looked around. And I realized as I sat there that this was a good day; that I would remember and appreciate this day because the future would hold many days never as good as this.

And, unfortunately, I was right.

Making Up For Time Lost

It’s been over 2 years since I’ve written on this blog. My only excuses now might be laziness or exhaustion, but I prefer my rationale at the time. I was just beginning my trip with Jim through his Alzheimer’s/dementia journey, and so I was on an information search, checking out various blogs, Alzheimer’s websites, talking with people I know who have dealt with family members or friends suffering with various forms of dementia. There was just so much information out there, so many different blogs and stories, I couldn’t help feeling that I would be adding nothing new to the discussion.

But it’s been over five years now since I noticed Jim’s first symptoms, and I have learned a lot; perhaps not a lot more about the disease itself, but I’ve learned a lot about me, a lot about Jim and our fluid, changing relationship, and a lot about the many meanings of family. So that is where I think I will be taking this blog. I will likely bounce back and forth, as things come to me, or as Jim changes.

And though when I first began this blog, I did not want to post photos or give more information about Jim’s identity, I no longer feel so strongly about those things. Nothing I write now will ever hurt or embarrass him.

This thing called life can sure be a bumpy ride. But I’m grateful for every tumultuous minute I’ve had on this magnificent planet, bumps and all. And, though it may seem hard to believe, I am grateful for this time I am sharing with my husband. I believe I am a better, more compassionate person for the experience. Though I’d be less than honest if I didn’t also say I wish none of it had ever happened.

(Above photo taken March 24, 2017 at Descanso Gardens, La Canada Flintridge, CA. Jim still enjoyed taking photos with his 35 mm Nikon back in 2017. Today he no longer knows how to use the camera.)

One Of My Biggest Fears

I don’t want him to ever be afraid. I don’t want him to be scared.

Yesterday I had to take my car in for service. The Lexus dealership where I get my vehicle serviced is far enough away from home that if it’s going to take more than a couple of hours, I usually get a loaner and drive back. But this service was supposed to only take two hours so I chose to stay in Glendale and spend some of the time in the Glendale Galleria Mall.

I informed Jim and told him that he could call me if he had questions about anything. During the time that I was in the mall, I called to check on him but he didn’t pick up. Most of the time, he forgets to carry his phone or he just doesn’t hear the ring in his pocket but I figured he would call me if needed.

My first stop at the Galleria was Peet’s Coffee where I sat with a non-fat latte and read through some research material for a book project. Tedious and very confusing stuff on sectarian conflicts in the Middle East; not necessarily my choice of projects but as a neophyte in the freelance world, I’m tackling it. I doubt anything I write is going to screw up chances for peace in the Middle East.

The Glendale Galleria is pretty big so I took my time and strolled all the floors, stopping in just a couple of the stores to look around. By ninety minutes, I had had enough of the noise and crowds and called for a ride back to the car dealership. Fortunately, by the time I got there my car was serviced, newly washed and waiting for me. Apart from the fact that I have to go back in a month for new front brakes (something I was expecting) all was well and I thanked Fred, my longtime service rep.

I called Jim to tell him I was on my way home but, once again, no answer. I wasn’t concerned, however, and expected to find him right where I left him, sitting at the family room table, coloring or looking at a movie on his iPad. I was almost right.

He was standing on the front lawn waiting for me. “I’ve been so worried,” he said, hurrying over to me and hugging me, purse, bags and all. I put my arms around him and felt his shirt, wet and sweaty and sticking to his back. I looked up at him. “Why are you so hot and sweaty?” I asked.

“I’ve been walking to the end of the block and back looking for you,” he said. “I was worried.”

“Out walking back and forth in 104° heat?! Babe, why didn’t you just call me?”

“I was afraid you might be driving and try to answer the phone. It might be dangerous.”

He knows I have Bluetooth in the car; I just have to touch a button on the car’s steering wheel and the phone call is connected. He knows … but now it’s ‘he knew.’ What still should be in the present is now in the past. Not just a past that’s remembered but a past that’s forgotten.

“Let’s get in the house out of the hot sun,” I say and we go inside. Bags are barely on the floor before he hugs me again. “I was so worried.”

I kiss him and say, “I’m gonna change my clothes and then make us lunch.” I head to the closet and my eyes are already tearing. I know there are terrible and difficult things coming that I can’t even imagine going through but this, for now, is my biggest fear. I don’t want him to ever be afraid. I don’t want him to be scared.

Yes, there are times I am so frustrated with him, with our situation, I could scream. But to see him scared and vulnerable; this intelligent, wonderful, caring man with the incredibly crazy sense of humor; this doctor who could relieve a patient’s pain so quickly that they cried in sheer relief; to know that he is so dependent on me, so much so that my absence can bring about such panic and fear; the weight of such responsibility is overwhelming. I know I must try harder to not let that happen again. I also know I will fail; it’s just inevitable. But I must try.

I take a deep breath, wipe my eyes, and after changing my clothes, head into the kitchen to make us lunch. “How about grilled turkey and cheese?” I ask.

I Once Rode With Lance Armstrong

Although it is quite common for Alzheimer’s patients to misremember events, most people are surprised to learn that the rest of us do it, too …

A few years ago, before Lance Armstrong was stripped of his seven Tour de France titles and banned for life from the sport of cycling by the International Cycling Union, when we American bicycling enthusiasts were mesmerized by him and his seemingly unstoppable Tour victories, a story went around our little dental office community.

It seems one of the dentists who was an avid cyclist himself was riding with a group of friends somewhere along the Southern California coastline. According to the story, this dentist and his buddies were riding along the coast highway, enjoying the view and the invigorating sea air, when out from a side road another rider swung onto the highway and fell in with them. It took just a short distance before the dentist and his friends realized that someone very special had joined them. It was Lance Armstrong, arguably at that time considered (at least by us Americans) to be the best bicyclist on the planet.

I imagine these bicycling enthusiasts/hobbyists were totally blown away and may have had quite a time keeping their bike tires on the road. Lance stayed with the little group for awhile before turning to the men and saying, “You fellas are welcome to ride with me for as long as you want but I gotta get down to work now,” and with that, he was gone. Like he’d been shot out of a cannon or something. I don’t think any of the group even attempted to catch up with him.

Like I said, this story made the circuit among the bicycling dentists in our community. When I think about it, I’m surprised at the number of dentists I’ve known who’ve been avid bike riders. Though Jim was not one of the group riding along the Coast that day, he loved to tell that story, too. Only the other day, his re-telling of the story took a surprising new twist.

“I once rode with Lance Armstrong.” Jim and I were watching the Amgen Tour of California, our state’s premier race which attracts riders not only from the state but from all over the world. It was sort of our lead-in to the Tour de France coming in July. I looked over at my husband. “Don’t you mean the time those other dentists …” I thought perhaps if I gently suggested an alternative scenario, it might correct his memory. No, he was quite adamant: he’d been in that group of riders and rode right alongside Lance Armstrong. I could see there was no point in trying to correct him. Besides, what harm did it do for him to have such a cool memory? “That is so awesome, Babe. I would have loved to have been there.”

Although it is quite common for Alzheimer’s patients to misremember events, most people are surprised to learn that the rest of us do it, too, and more often than we’d like to admit. But that’s a topic for another day. One thing I do remember (hopefully, correctly) was the first time Jim introduced me to the spectacle that is the Tour de France. We were on a biking and wine tour of the Russian River Valley and he was frantic to find a bar where we could watch the Tour because Greg LeMond was racing again after being out of the competition for two years due to gunshot wounds in a hunting accident. Well, damn, if LeMond didn’t win the race in the final stage and I was hooked on bike racing.

Today is Stage 4 of the Tour de France and Jim and I will watch it together (we record each stage so we can watch it at a convenient time) and I’ll see if we can share some more of our own biking memories.

And I honestly don’t care if they’re remembered correctly or not.

Viola Haley, the Rodeo Cowboy and the Little Red-headed Boy

But he would never get to know his mother, never even get to see a picture of her: Viola died when he was only two. She was fifteen days shy of her thirtieth birthday.

On November 21, 1940 in Wewoka, Oklahoma, Viola Haley gave birth to a little red-headed baby boy. It was a cold, inhospitable day. She had neither money nor inclination to attempt a trip to the hospital but birthing at home was not the uncommon practice it is today. Her husband was not around. A rodeo rider, he was out on the rodeo circuit and likely wouldn’t be back for at least another week. Viola hurried to her neighbor’s and banged on the screen door. “My water’s broke!” she cried.

The baby arrived hours later, and the young mother, drenched in sweat in spite of the icy day outside, slept for hours as rotating neighbors kept watch over her, the newborn and the 3-year-old sister. My husband James would grow up, both in-and-out of that very unusual household. But he would never get to know his mother, never even get to see a picture of her: Viola died when he was only two. She was fifteen days shy of her thirtieth birthday.

It turned out his father was not one to really settle down after that. Over the course of his life, he married six times. And after Viola died, Jim’s father hired people to take the young boy in. So except for a couple of instances, Jim never lived with his father or sister. He told me that at one of the homes he lived in, the woman of the house didn’t like him. He was about six or seven at the time and upon coming downstairs, he walked past the bathroom. The door was open and he glanced inside. He was surprised to see it occupied by the woman, stark naked on the toilet. His eyes opened wide with astonishment when suddenly she jumped up, yelling, “Why you little pervert, I’ll beat you to an inch of your life!” Young Jim turned tail and ran as fast as he could but the woman, still naked, caught him and started beating the crap out of him with her bra.

It wasn’t until he was seventeen and had to get a birth certificate so he could join the Navy that he discovered that the mad woman flailing the brassiere at him had not been his real mother. “Didn’t you know, Boy?” an aunt of his asked.

No, he didn’t know. He had always thought that bizarre brassiere-waving woman had been his mother. He sighed, at first relieved that she actually hadn’t been, until it dawned on him that no one had ever bothered to tell him that his real mother had died when he was only two. And suddenly his relief turned to tears.

And it still hurt years later when he told me.

As an adult, Jim never asked his father why he had farmed him out to strangers rather than let him live with him or other family members. Jim suspected that it might have had to do with the wishes of the various wives. While he was growing up though, he believed it was because he stuttered. But I suspect the young boy stuttered as a result of being placed in the care of so many different strangers who didn’t give a damn about him.

And that thought has more than once brought me to tears.

When The Gas Pump Is The Enemy

My husband came to me with an embarrassed look on his face this morning. Not just embarrassed, heartsick. Or maybe that was me; heartsick that his last memory of me showing him how to use the gasoline pump at our local Chevron station was no more retrievable now than the two previous times I had shown him. This morning he wanted me to write down all the steps on his little notepad.

His driving is a big deal to him — and I certainly understand this. Driving in the United States, and especially in Southern California, is a rite of passage and some aficionados would say worthy of its inclusion in our Bill of Rights. In SoCal, we long ago gave into the wishes of the petroleum giants and corporate interests who gutted our miles of public transportation lines in favor of oil rigs, cement highways and gasoline pumps. We may be trying to catch up now with the realities of fossil fuels’ limitations but cars and freeways have become for us an ingrained way of life and may take several more generations (if we’ve that much time) to change our mindsets.

For me, buying gasoline when I got my driver’s license was as easy as putting the key into the ignition. A friendly young man dressed in a crisp clean uniform would smile at me, ask how much gas I wanted, then he’d cheerfully check my oil and water levels and clean my windshield. I’d drive merrily away without ever getting the smell of gasoline on my hands or breaking a nail trying to life the hood on my own.

That all changed when self-service gas stations came into popularity. In the beginning, Jim would fill up both of our cars, thus enabling me to continue living the life of a car-driving princess but I was also beginning to feel stupid and inadequate. And I wasn’t helping my daughter much either who was also in the same boat (rather, car) as I was. When I finally did get the nerve to drive up to a pump on my own, I had so much trouble I had to ask the attendant in the booth for help. Nice kid not only looked at me like I was stupid, he came right out and told me so. That set me back a good six months.

Long story short, I have a lot of empathy for what my husband is going through. The new pumps with their fancy computer screens, though helpful to most, can be mind-boggling to someone whose thinking processes are not only slower but also challenged by a lack of memory-history. Without being able to remember what you learned just minutes or hours before to guide you, that gasoline pump can be as frightening as a monster.

I wrote down the steps in my husband’s little notebook but I know that it likely won’t be enough and I will have to show him again. I won’t mind; he never complained about taking my car to fill it up. And quite often he’d get it washed at the same time. That was always a treat.

I know his days of driving are just about over. But I want him to be able to enjoy the freedom of getting about on his own while he still can. I just hope we can make the coming transition from driver to passenger without any incidents or accidents — and without him hating me.

The Peach Of All The Cream

I met my husband under duress; my duress, not his. I had recently moved to a new town and was in desperate need of finding a good dentist. A friend whom I’d recently met in the Junior Woman’s Club recommended her’s; said he was kind, competent and had a hilarious sense of humor. A dentist with humor, I thought? Good, at least one of us would be laughing. And knowing the possible state of my mouth, chances were pretty good that he would be laughing all the way to the bank.

Other than competence and humor, I wasn’t sure what to expect when this very tall lanky man strolled into the operatory where I sat propped in the chair of torture and doom. He was sporting bell-bottom blue jeans, a colorful flowery shirt and a bright engaging smile surrounded by a bushy red beard. A ruddy complexion dotted with a freckle or two, piercing blue eyes and bright red hair atop it all completed a look that I was just not expecting. Not that I ever thought that redheads didn’t become dentists; it’s just that in my entire life I’d only known one or two. “Hi,” he said, “I’m Jim C. How can I help you today, Mrs. K?” (For now I’ll just use initials.)

Though I answered his question, I really didn’t need to; one look inside my mouth confirmed the sad reality that I hadn’t been to a dentist in a long time. I became a regular at the office for the next few weeks as my dentist with the bushy red beard and wild sense of humor drilled his way through fourteen (yes, I hate to admit it, fourteen) cavities. I also kind of hate to use the word ‘drill’ as I never felt anything that remotely resembled what I initially had imagined drilling would feel like.

Well, on about the third or fourth visit, Dr. Jim sauntered into the operatory singing a funny little ditty. “I’m the greatest, I’m the one supreme. I’m the latest, I’m the peach of all the cream. I’m that lucky star that shines so bright above. I’m the greatest and it’s me I love.” It would be just the first of many such ditties that I would hear him sing over the years.

I would be his patient for eleven years before changing circumstances in both our lives would bring us together as more than just doctor and patient. During those eleven years before we ever went out on a single date, he smoked, then quit smoking and took up cycling. During the next twenty years, dentistry changed a lot and he had to accommodate those changes. From new regulations and equipment to wearing scrubs, gloves and masks in the operatory instead of street clothes. But the crazy little ditties and singing never changed and the singing never stopped.

Until that last year and a half that he practiced. Then the jokes gradually ended and the greatest, the one supreme and peach of all the cream, stopped singing his songs. And I knew things were wrong.

I miss a lot of things now. I miss his curious nature, his sense of adventure, his love of camping and bike riding. I miss his jokes and his sense of humor. But I really miss his singing and those crazy made-up songs. I miss my Peach of all the cream.

The Silence

To take the jumble of letters in his head, construct them into words and then piece them into sentences … it’s just too damn hard.

I wasn’t prepared for the silence. Actually, I wasn’t prepared for a lot of things but the silence really threw me; it still does. There are days when it is like no one is in the house but me. I’ll speak to him, sometimes carry on a whole conversation before I realize he’s not turning his head or acknowledging me in any way. And then I realize I’ll have to start all over again, perhaps go stand right in front of him. And this happens so often, I sometimes just forget the whole thing and walk back to my office upstairs.

I know it isn’t his fault,and on top of that, I’ve been dealing with this for almost three years now so I really don’t have an excuse to be annoyed about it anymore. I should just accept it and deal with it. But,damn, I still can’t get used to it and it drives me crazy. He’s totally deaf in one ear–the result of a motorcycle accident when he was sixteen — and the other ear, well, even with his hearing aid it’s not much better.

Sometimes I think he just doesn’t want to speak because it’s becoming too difficult. To take the jumble of letters in his head, construct them into words and then piece them into sentences that convey what he wants to say … it’s just too damn hard for him now. I watch him many times when this urge to be understood is overwhelming, almost taking on the force of a primal instinct. And I wonder what would he — what would I — be willing to give up just to be understood? Utterly frustrated, he will cover his face with his large elegant hands, hands that at one time did delicate dental surgery, then cry out, “I hate this! I hate this!”

I hate it, too. But even more than I hate him not hearing me, I hate not hearing him. Witnessing this man I have known, admired and loved for over half of my life, lose his language, his memories, his cognitive skills … it is like looking up and watching a plane plummet uncontrollably toward earth and there is nothing you can do to stop it, nothing you can do to save the lives of the hundred-plus souls on board. Only you and your spouse are the only ones on this particular plane and its crash will take months and years, not minutes. This crash will take every bit of life and stamina and will for you to deal with its slow but continual trajectory toward its ultimate destination.

I would be lying if I didn’t admit there have been moments when I have desperately wanted a parachute. Jump, bail out now! But those moments are usually fleeting; bad mornings when nothing has seemed to go right, I didn’t get enough sleep or evenings when I feel so exhausted I see no hope for any kind of future. But then I will think, Girl, you’re strong and you’re smart and you can do this. And I cling to that mantra. I’m strong, I’m smart and I can do this. Damn, I hope I am anyway. I hope I am.

And then Jim will look up at last and ask, “Do we have any ice cream?” And I’ll answer yes and get up and head for the kitchen.

I’m strong, I’m smart … and I can make an ice cream sundae.