Archives for posts with tag: Alzheimer’s caregiving

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.

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.