Archives for posts with tag: Alzheimer’s

Time heals all wounds.

A platitude.

They make us feel better and we cling to them in difficult times. The truth, though, is that that’s all they are. They aren’t pronouncements that foretell the future or promises that pain will cease to exist. They give us enough comfort to get us through, so that when the realization comes that pain is a steed we ride through time, we’re strong enough to keep our seat.

Today is the three year anniversary of my mother’s death. Time has actually done enough to make her loss easier for me. I still think of her every day. Many times. Her favorite foods remind me. TV shows she loved. Songs. I look at pictures a lot. I remember her hugs, as if I can still feel her arms around me. I look at images of her hands and think of how comforting their warmth against my hair and forehead always was when I was sick. So much of daily life carries her with it. 

But no matter how much time passes, it won’t heal the hole she’s left in my life. It gapes there, behind every moment, a rending wound. The rending pain fades, but the hole does not close. I think that when we love someone so much for our entire lives they leave an indelible mark. And that’s good. In her final years, her own mother was with her every day still, decades after she was lost to her. Alzheimer’s actually enhanced that. It brought her hallucinations that gave her mother back to her when she needed her most. So that she went from talking to me about her to talking to her. I’m glad all the time that passed wasn’t able to take that connection to her precious mother away from her. Some people are meant to transcend loss and time. The best mothers are our mothers forever.

So time serves the purpose of softening the hard, jagged edges of grief. It gives us a measure of peace. And once the grief is no longer so sharp, it opens the door to remembrance and grace. A measure of healing lies in that place, it’s just that the healing is a lifelong process, borne in the arms of love.

I’ve entered a lot of screenwriting competitions. So many in fact that I can’t say off the top of my head how many years I’ve been doing it. I actually got kind of addicted to it. It’s helpful to keep yourself setting and meeting goals, keeping up your A game, and with the right attitude it’s fun.

I’ve hit some pretty high highs, as far as advancing goes, with three dramas and a science fiction, all feature length. The dramas have all been Moondance finalists, one twice, and one was a semi-finalist. Two have made the top 25% of the Page Awards, while the science fiction one was a Page Awards quarter-finalist twice and a semi- finalist once. A drama made the top 10% of the Nicholl, the science fiction one the top 15%, and they have all had several variations of one and two positive reads. Not bad at all.

So why did I suddenly put a freeze on all competition entries this year? Under slightly different circumstances I’d call it competition fatigue, reached at last. Rejection fatigue certainly plays a part in it. Between this and fiction rejections, I have endured a near constant barrage for many years. There’s a lot to be said for what the human spirit rises to when properly motivated with a high enough reward potential dangled at the end of a long, rocky road. However, bluntly put, this human spirit is exhausted.

I’ve learned that endurance tests are not necessarily meant to be endured without pause virtually forever. It is perfectly acceptable at some point to break what you’ve seen as a never ending test of talent and character into separate phases of the same journey. Interstates have rest stops for a reason.Some people are good for the long, unbroken haul, no matter how long it takes. I was. But then life throws something in that makes you reevaluate, regroup, and sometimes replan.

Life threw my mother at me. She got Alzheimer’s. I got the responsibility of caring for her. Until you face it yourself, it’s impossible to grasp what that means. As the disease progresses, so does your role in your loved one’s life. Eventually becoming completely responsible for a beloved parent is life shattering. You have to dig deep and deeper, you change into a deeply mature adult, as they change back toward childhood. I became stronger than I was, more mature than I was capable of being, and learned that words like limits and strength and courage have no real meaning, because the meanings are redifined as time passes. Love becomes redifined as well, becoming the reason for everything. As difficult as it was, I would do it again, even knowing what I faced, because such a wonderful parent deserved the best possible wind down of her life, even held submerged in the depths of the weighted enemy called Alzheimer’s.

By the time she slipped away from both of our lives, on July 15, 2016, I was more exhausted than I would have thought possible. Even as I readjusted to being only responsible for myself, I missed her every day. I still do. I rest, I recover, and I’m just so glad that I got through it.

Somehow through it all I managed to write. Not prolifically. Not really steadily. But I wrote short fiction and I submitted it. This was my piece of myself that I retained throughout. I sold a story to Analog in time for my mom, my greatest support, to know and briefly understand. I continued to enter screenwriting competitions. Eventually I narrowed my focus to the Nicholl. I entered three screenplays a year. At least one would get a positive read every year, sometimes two, at times they all did at least some little miracle of a positive read or two, occasionally not so miraculous.

A couple of years ago, I checked email on my phone in a grocery store parking lot. Hammered, nearly in public, by three responses that were not as good as I’d hoped. Okay, expected. It had started to seem that I went backwards some years. Had for a while in other years, other competitions. That was when the need for the symbolic rest area became undeniable. I entered three again last year and only one got anywhere at all, with two positive reads.

Backwards.

I don’t understand how levels of success can fluctuate so widely, from competition to competition, from year to year. It seems to be, loosely put, the nature of the game. That’s okay. I know I’m not alone in it and that I’m very fortunate to consistently do so well, for so long.

I also know that I needed a break. The moments of opening competition results emails, followed by the jolts of recognition that nothing big was happening for another year needed to be followed by a break from said moments and jolts. The realization that the sheer joy of knowing a screenplay I’d written, a story I’d told, had received two positive reads in the most prestigious, highly competitive arena in screenwritingland was overshadowed by the disappointment over the two that received none. Even though they’d gotten notice several other times. I wasn’t fun anymore. It was painful.

Somehow, stepping back for a year was the right thing to do. It lowered my stress level. It gave me a measure of peace, turning the leadup to the results announcements away from dread to a space of peace. As the time to start thinking about 2019 entries approaches, I’m doing just that. I’m not sure the fun will fully be back in the game. After going through such a life altering experience as being an Alzheimer’s caregiver, a new gravity settles over my life. It’s not always at the surface, but it colors the way I consider everything. All I can do is enjoy testing myself as much as possible, while I hope.

I can’t help but remember how much my mom loved movies, when they were coming of age together. She would be so proud if my name someday appears on that beloved silver screen. The thing about wonderful mothers, though…she would be just as proud of me if that never happens.

So, onward. Above and beyond, always…with necessary rest stops on the way toward the stars.

​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.