Archives for posts with tag: Alzheimer’s

​After struggling to regain my writer’s equilibrium, first due to the escalating crisis as my mom’s life slowly wound to its close and then this painful, disorienting year in the aftermath of her death, I’m finally getting back to my writing life. In a previous post I wrote about deciding to try writing on my tablet, as a way to get back into regular writing. I can now say unequivocally that it was a smart move. 

I had been working on a story a little (a very little) at a time, but just couldn’t manage to emerge from the fog of grief long enough to make consistent progress. The need to write was there, but it lay half buried in the past, a past both near to the present and spread out over my mom’s near century long life that I knew as if it was my own from her stories. For a time, though I remembered, it felt lost to me, just out of reach, elusive yet tantalizingly near to my heart. 

Some clichés are oft repeated because they hold wisdom and truth. Time does heal wounds, even those so deep that they sear a scar across our personal landscape. Slash and burn, new growth, fresh and tender, eventual layers of the past buried like treasure beneath the feet that tread the surface. It takes time for those left behind by the death of a loved one to be able to probe the depths of memory to mine the comfort to be found there. For a writer those depths call out to be probed and touched and cherished, even before the ability to do so appears.

The key to my return to the writing life came with the spontaneity of being able to pick up a tablet, turn it on, and be writing as the impulse hit. There was an immediacy that’s  just unobtainable with the bootup process of my laptop. The wait to begin writing was killing the impulse, making it a chore instead of the usual pleasure writing is for me. 

The result of my decision to write on my tablet was a streak that began the process of bringing me back to myself, from a loss that started over the long years of struggle to get my mom and myself through the end of her life. Alzheimer’s is a relentless foe. It pillages, plunders, burns lives to the proverbial ground, and leaves a path of profound loss in its wake. Losing my mother as I’d known and adored her for my entire life, long before I lost those last treasured hugs, was the most life emptying loss I’d ever experienced. No wonder I had trouble writing.

Once I began experimenting with my tablet, I found myself writing every day. Every. Single. Day. Sometimes it was two sentences, but that was two sentences I didn’t have the day before. Often it was much more. A laptop chunk stitched together from many struggling attempts laid the groundwork. Once I started on my tablet, I wrote daily from April 10th to July 4th to finish it as a novella. When I typed the final words, I decided to pretend for a moment that all the fireworks were for my own personal celebration of the return of not only my creativity, but also the discipline that serves as the backbone of finished projects.

Of course I haven’t stopped missing my mom. That will never happen. But I have stopped missing the routine of my writing life. A step back toward normality, accompanied by the pleasure that comes from weaving words together, into a cloth of wonder and worlds and dreams.

My mom was six weeks shy of turning 97, when she died this summer.

Sarah McCage taken April 18, 2012

I took care of her for a long time, as she succumbed to Alzheimer’s, but even before that whenever we were together she told me stories from her remarkably long life. She loved to tell them. I loved to hear them. They weren’t just flat, rote stories. They were a give and take, question and answer, memories and love part of our lives. She lived a fascinating near century. Her very life entwined with important historical events and I’m privileged to be the one to hold her history in my own mind and heart. 

This studio portrait was taken when she was a teenager. I think she looked like a movie star from The Golden Age of Hollywood. 

People who knew her know how cool she was. Several have asked me to write down the stories she told me. Make a record. Keep them alive. Oral history is a dying art. I feel so fortunate and honored to have been a part of a decades old tradition that, while technically oral history, was in actuality simply a mother and daughter cherishing reminiscence. 

I plan to eventually put together an eBook titled the same as this blog feature. For now, I’ve decided to post individual stories here (including old photographs), as they come to me and I put them into written form. I’m partly sharing them here so the people who have shown interest will have early access and partly because many of the experiences she lived through have a historical and national, even worldwide, importance. As her generation dies out, so do the stories of their lives. Her memories range from the small every day bits lost to most, to being present during much of a century’s events. I’ll be recounting them from my point of view, as she told them, because that will help me remember them best. I hope everyone who reads Stories From My Mother comes to know her and our generations of extended family, and enjoy reading of one woman’s walk through time.

I’ve been sidelined by a wrecked back. The kind that’s so bad it makes walking an ordeal. More than a decade ago I injured a muscle in my lower back, lifting an old style computer monitor. After the fact I found out they weigh about forty pounds. No wonder I actually felt the muscle tear. I was incapacitated for weeks, wanting tomato soup and toast daily, for some reason unknown. I had an old cane that my aunt used when she broke her leg, and used it to hobble to the bathroom. I still have the cane. Still use it, though the hobble isn’t quite as bad this time. Probably due to the absence of muscle spasms. Those things would sideline a moose. This time pasta with an excess of shredded parm loaded on is my food of choice, liberally interspersed with chocolate and ice cream, and tomato or avocado sandwiches. My palette has apparently shifted over the years.

Other than struggling to stand (and hobble) sufficiently to acquire food and make necessary trips down the short hall that seems at least a mile long these
days to the bathroom, I’m mostly only good for sitting and staring at the TV. I’ve gotten through a bunch of movies. I’ll do a roundup or something about the best of them in time.

At the moment I’ve used up a big quota of my concentration ability on writing a few hundred words of my zombie story last night. It’s an unfamiliar struggle to write, since my mom died in July, so a few hundred words is a real accomplishment right now. Yes, I am aware of the irony. I started that story in the spring, just because I wanted to try something different. Unfortunate timing, but I want to finish it before starting something else…or going back to my serial killer script. Oddly, I think zoning on the Walking Dead marathon this week shoved me back into the world of the living, breathing writer I am, since it dragged zombies right up to the front of my mind again. I should just call this the year of death.

So how did I hurt my back this time? It would be funny, if it hadn’t ruined at least two solid weeks of my life.  I try to do a Travel Tuesday pic on Twitter every week. A couple of weeks ago it was this one I titled Scenic Roadside New Mexico.

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It was in an old photo album of a lot of cross country trip pictures. Old and big and heavy. Without thinking, I grabbed it up with one hand and carried it around. There was at least one twist in there somewhere. It took a day for the pain to kick in. I’d gone to a Chinese buffet and went inside fine. When I got up to hit the buffet, I suddenly could barely walk. What the–? Took me a couple of days to figure it out.

This weird, suddenly destroyed back thing runs through the women on my mom’s side. Her sister had a terrible episode once, finally got it better, only to sneeze and cripple herself again. I’ve learned to brace wherever I am when I feel a sneeze coming on, to the point of once almost taking down a section of metal CD racks at Walmart. A weird, bad back can be a hazard to more than one’s personal…person.

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I managed last week’s Travel Tuesday, despite my own personal faux zombie apocalypse (more than once I thought of how my painful shuffling gait was like a Walker parody). This White Peacock on Oahu one didn’t involve heavy lifting.

Here’s Today’s Travel Tuesday pic, while I’m on the subject. A beautiful and dramatic hillside vineyard near the Mosel River in Germany.

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I’m hoping this forced break from normal life will reboot me back to a long term more normal life, after the disruptive, surreal, and heartbreaking years of living life through the lens of my mom’s long journey through Alzheimer’s. I miss her every day, but emerging from that period of our lives is like walking into bright sunshine, after living in a cave.

I’ve said that there will be times when I’ll write here about serious topics, now that my mom is in the nursing home. There’s no more serious topic than the many difficult decisions that are an unavoidable part of being responsible for someone with Alzheimer’s. I want to write about something a lot of family members who are caregivers have to face and I wish so much that I’d known about it before I slammed into it head on. If even one person reads this and it helps them face the unthinkable, it will be a blog post well spent.

Of course, having to put her in the nursing home was awful. That’s the first big decision hurdle. For some it ends there. The parent you’ve had to parent for so long settles into their new reality, which makes their life and yours better. Visits are difficult, but not horrible, and the awkwardness and even dread get better. The disease progresses, you endure, and it eventually ends everything.

There’s another side to Alzheimer’s I didn’t know about, until I was blindsided by it. Along with the symptoms we all hear about from the news media, movies, and relatives dealing with it, this unexpected side is unimaginable until it becomes harsh reality. It turns out that when my mom was even worse than what I’d thought was almost (I say almost, because unlike so many she always knows me,) as bad as it gets, I had to learn fast about the darker side of Alzheimer’s. Not all, but a surprisingly high percentage, of Alzheimer’s patients develop psychosis. There are hallucinations, delusions, aggressiveness…traits that were the absolute opposite of this amazing, wonderful woman.

She was admitted to a geriatric psychiatric hospital for behaviour treatment and medication adjustment. This step is incredibly shocking to a child caring for a beloved parent. I had to go to a treatment team meeting,
where her wonderful doctor explained how they planned to help her and answered questions. He wanted to put her on Alzheimer’s meds that he said he’d seen good results from. He also told me these meds came with Black Box Warnings, and that I should familiarize myself with them and ask any questions I needed to. I said I knew about Black Box Warnings and that I thought under the circumstances it was worth the risk. He agreed. She had no quality of life as it was, so a chance to slow down the progression of the disease and alleviate the scary psychosis was a potential gift.

When I got home I hit Google to look into the situation more deeply. These Black Box Warnings were even more dire than I’d realized, with the worst of the possible risks being death. Still, all things considered, I felt it was better to give her a chance to have even a little more quality of life. I worried, but held firm in my conviction.

I’m so glad I did. I just got home a little while ago from a wonderful visit. I sat with her and showed her pictures I’d taken with me of birds and animals. She oohed and ahhed, and we both enjoyed our time together so much. We talked about all kinds of things…the weather, my writing, how to cook asparagus, even current events. Even at such times I’m always thinking about what I’ve learned  that make things easier for us both, like being careful about overstimulation, signs she might be getting overwhelmed, keeping things simple and not throwing too much information at her at a time. There are times when I’ve seen all of that occur and adjust our visit accordingly. Today, and for quite some time since the meds did what they were meant to do, I saw none of it. She was the sweet, funny, wonderful person she’s been for nearly a century. For the time I was with her, I had the best mother in the world back.

I’m not saying she’s perfectly alright. She still has Alzheimer’s and will until it finishes it’s terrible course. They took her off a couple of the meds recently over some blood pressure issues and I was really worried that the improvements would end. So far that’s not happened. They’re intended for short term use and the goal is a slowing of the progression and easing of the more severe symptoms. There’s no concrete timeline with this illness. And there’s no timeline for how long the improvements from the meds will last. I could have these wonderful visits for a few years or the progression could resume at any time. As with everything else involved, I have to take it a day at a time. Be strong. Be resilient. Be her advocate. Be her child who carries the responsibility of a parent.

That responsibility is terrifying. It was such a difficult decision to agree to medication that might kill her. But the smartest thing a caregiver for someone with Alzheimer’s can do is arm themselves with knowledge, with compassion, and with wisdom. I’ve had so many medical  professionals tell me the importance of quality of life over quantity of life, when you’re forced to make vital decisions about the care of someone you dearly love, as their life closes down. Those decisions may come frequently and be terrifying in a rapidly escalating manner. My goal has become making whatever time she has left to us the best it can be. Choosing the Alzheimer’s drugs turned out to be the right decision. If they had done their worst, I truly believe it was still right to take the chance that they might do their best.

I’m making the decisions I believe she would make for herself, if she could. And for now I’m cherishing the memories of these brief, golden days when I can experience moments snatched out of time with the mother I remember and love so much. Each one is a gift for both of us, even though I’m the only one who remembers them the next day.

Some visits with my mom in the nursing home are better than others. There are times when she’s a bit snarky, times when she feels bad, and times when she’s sound asleep and I don’t even get to talk to her. Then there are times like tonight.

As I walked in I saw that she was watching The MTV Movie Awards. She was doing well and we chatted about all kinds of things. I noticed that her gaze kept turning to the TV, even as my head swiveled periodically to see who was onscreen. So of course our conversation was interspersed with exclamations about celebrities, hairstyles, and ceremonywear. Even that most dire of antagonists named Alzheimer’s cannot make her forget her love of Hollywood.

She always loved to read about
movie stars. Back in her day the royalty of Old Hollywood reigned on the pages of myriad movie magazines and the ever evolving technology of television. I distinctly remember the moment when I pulled open the doors of a large cabinet under our dining room buffet as a child, and discovered the aging paper of her old magazines that were a record of her love for those old movies. Her sister, my Aunt Pearl from previous posts, had an old photo album with crumbly cutouts cannibalized from her own collection pasted in for posterity. The apparent genetic pull goes even further back and all the way to Hollywood itself. My grandfather’s niece moved “out there” and became an obscure part of Hollywood history as a stand in during Old Hollywood’s hey day. So my childhood was filled with references to movie stars, movies, and even family lore from The Golden Age of Hollywood.

I fell under the spell of Old Hollywood as well, from watching a TV channel that showed the old black and white gems late at night and on weekends. Such classics as It Happened One Night, Arsenic and Old Lace, Mrs. Minever, The Thin Man Series, Being Up Baby,  Manhattan Melodrama…and more than I can record or recall. They all went into the giant mental vat that became the origin of my urge to write screenplays, though it was a long time before I realized it. Little did I know as the kid who loves old movies that one day I’d write screenplays that do well in some cool screenwriting competitions.

I didn’t really put it all together until tonight, as my mom and I found a moment when we could both be together in the same time and place, through that fantasy world called Hollywood. It had never really occurred to me how deeply my life has always been connected to movie magic and people who love it, even lived it. It makes me feel as if every screenplay I write is part of my heritage. A heritage and history I’ve become a real part of, in ways so unexpected that tonight, suddenly, I feel awed by just how deeply my love of Hollywood runs through my veins.

I’ve had a lot going on lately. My mom’s health got so bad that I had to put her in a nursing home, after taking care of her by myself for many years. It’s a unique kind of heartbreak, when you watch someone you love so much become more and more dependent on you and then the realization comes that you can no longer provide the level of care that they need. I’m still adjusting and accepting the new reality we both face, and will probably write more about all that eventually. Right now I want to tell you about the way things that I thought of as separate merged recently. It’s been one of those times when life gets eerie and surreal.

Many years ago I started experimenting with flash fiction. A couple are deep in the archives here. There’s one in particular that I’ve been thinking about. I wrote it after an aunt I loved very much was stricken with Alzheimer’s. I never saw her when she had it, because she lived several states away. I spoke with her on the phone once, just as she was getting it. She was still herself, but very vague and forgetful. I’m glad that conversation became my last memory of her. This story isn’t about her. It was only vaguely inspired by her fate. And of course it’s certainly not about my mother, who was only recently diagnosed. That’s the thing. I had never been in constant contact with anyone suffering from Alzheimer’s, until my mother’s slow undiagnosed journey, then rapid decline. The story was my impression of what it might be like to live with a mother with Alzheimer’s. The eerie thing is that I got it so right. The mother isn’t my own mother and Caroline is not me, but they are too in a way. I think it turns out that they may be anybody’s mother and anybody’s daughter, bound by love and the past and the present. So my own fiction resonates with me, as if someone else wrote it. Perhaps someone else did. The person I was before my life made me more like Caroline than I could have ever imagined. Here’s a link, if you want to read it: To Smell the Roses Again

The movies part of the title of this post comes in after the nursing home became necessary. The need for distraction from stress and an unfamiliar kind of grief finds me watching TV and movies in the middle of the night, even more than usual. I picked a movie one night several days after my mom went to the nursing home. A random choice, I thought. Random choices can be tricky. What I watched was Rise of the Planet of the Apes. What could be more distracting? Science fiction, about sentient apes? Cool! It was cool all right. I had no clue, until I was watching it, that a subplot was that the lead scientist’s father had Alzheimer’s. I almost stopped watching it, when I realized where the plot was going, but stuck with it. By the time it was over I was glad I did. I really enjoyed the movie I’d gone so long without watching, in case it would somehow ruin my love of the original. No fear of that. It was such a drastic reboot that it was practically a whole new movie. And it handled its Alzheimer’s story so beautifully that it managed to be a bittersweet comfort to me that it made me feel better instead of worse over my own situation with my mom. Of course it also made me long for a real life cure. But that’s the stuff of science fiction and fantasy, until hopefully someday it moves into the realm of reality. Soon.

I really don’t understand how my real life experience with my beloved mother got bracketed so by my love of writing and movies. I also don’t understand at all why life has to be so hard sometimes. Or how such a difficult time finds comfort in moments when writing and real life and movies merge.

Rise of the Planet of the Apes Official Trailer HD

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     Caroline shouldered her way through the library door, arms laden with all manner of books.  There were novels and coffee table books about flowers and travel, volumes of poetry and stories of girls and their horses, anything she could think of that might spark a gleam of interest in the fading blue of her mother’s eyes. 

She paused to draw in an appreciative lungful of crisp, invigorating air, and admire the bright blue sky.  It contrasted appealingly with the colorful leaves of ornamental trees that lined the drive, azure, bronze, and maple red rubbing shoulders dramatically.  Fall had been her favorite time of year, but lately she found herself longing for the sense of renewal accompanied by spring. 

Fighting off a fleeting surge of reluctance, she went to the small haven that was her car, and drove home.  As she entered her apartment, the scent of baking apples welcomed her, but she knew it was only a candle burning in unconscious mockery. 

“Hello, Miss Caroline!”  The motherly woman who met her with a smile and a quick hug also mimicked what might have been.  What had been, once upon a time.

“Good evening, Betsy.  How is…everything?”

Betsy shrugged minutely.  “Pretty good.  We’ve had worse days.  ‘Night.”

She eased out the door, leaving Caroline to dump the books onto the hall table and walk alone to the chair by the living room window.  Caroline knelt to hug the frail figure seated there, but the elderly woman jerked free and looked up with almost feral alarm.

“Who are you?”

Ignoring the sharp fear in the petulant voice, Caroline swallowed back her deep hurt and backed off.  “It’s me, Mom.  Caroline.”

Immediate calm.  “My little Caroline?  How was your day, dear?  Did you pass your test?”

“Yes, Mom, I passed.”

“Oh, good!  I knew you could.  Math was always so hard for me.  But your father…”

“Yes, Mom, I remember.  He was a pip!”

“Pip?  Mama…?  Did Pip get out of his pen again?”

“No, Pip is fine.”  Long experience had taught Caroline to play along.  “Everything is all right.”

“Mama?  Tell me a story.  About a long time ago.”

Caroline slipped into the persona of her maternal grandmother.  She had heard the stories so often from this lovely, lost woman before her that she could tell them in her sleep.  She sat on the ottoman by her mother’s chair, and placed an arm around the familiar shoulders. 

“One day your father was in a hurry to go to work, and without looking, put goop in his hair.  Then he realized he had slicked down his thick, wavy hair with Pop’s denture cream!  He  tried for two days to get it out but he just kept looking like Albert Einstein with a bad hair day!”

Her mother clapped her hands. 

“And that’s when he started wearing a crew cut!”

“That’s right!”

They laughed together for a time.  Then her mother stilled, and grew wistful.

“Tell me about the roses, Mama.  That’s my favorite.”

“When I was a girl, my friends and I would cut the last of the roses.” 

Caroline closed her eyes, imagination drenched in the past. 

“We took them to the little meadow down by the creek, and spread them out all over the grass.  A carpet of roses, all colors, different scents, perfect and so beautiful that it was as if we were in a dream.

“We’d have a tea party, every single year since we were just children until we all grew up and life kept us from it.  Always the same place, always the final roses…the smell was like a living thing…”

Caroline kissed the soft, pink cheek and shivered a little.  It was as if three generations occupied the twilight shadows instead of two–grandmother, mother, and daughter–all linked by memories, and love, and the brief, cherished stepping out of time, to smell the roses again.