Alzheimer’s – Amanda Salisbury

Trigger/Content Warning for depression and suicidal ideation.

One tenet of discipline I discovered this year: instigate self change or course correction without shame, blame, or loss of frame. Lucky me, I had a few different opportunities to do this.

First, after the news broke. I’ve said I became suicidal. I’ve talked about steps I undertook. That was because I changed. Change can happen to you or you can ignite it. In depression, the first often happens. I didn’t have suicidal ideation, then I found out we were moving, then I did have suicidal ideation. Change happened to me; I felt like I wanted to die even though I had been fighting so hard to live. That is disease process. It can also happen the other direction, especially when the disease loosens its hold for a second: a person with suicidal ideation can experience life affirming stuff. I can feel like I want to live even though my brain is telling me to die.

This is disease process. I’m not sure I would know what life looks like without depression, or the threat of it looming somewhere nearby, or the memory of it casting a long shadow toward the present, or the fear of it ambushing the future. In my very not-a-professional opinion, I’ve been depressed for as long as I can remember. With various snippets and bouts of real non-depression – I don’t even know what to call it, the opposite of depression.

I’ve likened it to Alzheimer’s, again in a not-a-professional way. Both are disease processes.The two disease processes also exhibit obvious differences in awareness of behaviors and consequences, degeneration, legal capacity, and treatment, among other things. However, in both, the capacity of the individual to see herself and her world clearly is limited. In both, there may be spots of absolute clarity, remembrance, and baseline health. In both, decision making can be negatively impacted. The struggle to understand why a person who acts on suicidal ideation does so is not all that different from the struggle to understand why a person experiencing Alzheimer’s behaves in the ways she does. Not for attention. Not out of ungratefulness or lack of faith. Disease processes have hijacked both brains.

For a long time, I’ve heard this debate between depression being a choice or, well, not a choice. Having depression = not a choice. The disease process = not a choice. But depressed people do make choices all the time. Lots of them are really, really sound, too. We go to a friend get-together when we’d rather stay in bed. We engage with the people who love us, even when we are afraid they are tired of us. We reach out into the abyss of the internet because we still reach somewhere. We get out of bed in the morning. We eat a meal. We refill a prescription and take medication and go to the doctor. We create and work and go to school plays. All of these are choices against the inexorable pull of depression. We cannot choose not to have it. We also cannot, much like you, choose not to have cancer or diabetes or heart disease or or or or.

So, how does a chronically depressed person course correct? CAN a chronically depressed person course correct?

In the spring, course correction for me looked like answering the phone when my husband called and telling him the truth about what I was thinking and opening myself to the help that was provided.

In summer, my course correction looked like allowing myself to find pleasure in the new things I saw and did, like the ocean and the swamp.

During the hurricane, my self change was all about letting go of my personal belongings I thought I may have moved all the way to Florida just to have destroyed. It was also about knowing that I didn’t know and allowing that to be, to sit beside me without crowding me.

When we moved back to Oklahoma in October, course correction became tricky. I felt like I should be only happy to the exclusion of all other emotions. It’s where we left many of our people, our schools, our church home, our house. I’d only been in Florida a little while and yet…I felt wistful. Like I hadn’t finished. Like I wanted to have a foot in both worlds. Keep everything safe and same in Oklahoma AND throw life to adventure in Florida. And it felt bad. It felt shameful to not just be happy.

Moving back wasn’t different from the other course changes in the way my disease and I interacted. In each case, I had myriad opportunities to blame myself and others, to shame the same folks, and to completely obliterate the frame for my wellness. I almost did all three in the spring. That’s why it was so scary. I did that less and less as the year progressed, as I became more well.

What’s hard now for me is parsing what’s disease process and what’s just plain old me. Cognitively, I recognize it comes down to control. In mid-spring, there seemed to be only one choice: death. And it pressed on me from all sides. In the late spring, summer, and fall, I saw the diverse choices and I stewed over them and I jousted with some and wrestled with others and picked my way through it. Mid-spring was depression. Late spring forward, that was me. Me being stubborn. Me being plucky. Me being fierce and afraid and tentative and solid and strong and desirous and plaintive and weak and all the things humans are. It was me.

If you have depression, know that I know there is another side. A side where choices aren’t clear even in their existence. Where everything feels simultaneously frozen and in the most massive storm of the world. There are ways out, but you need help. Maybe in the form of people or medicine or doctors or therapy or meditation or a combination. If you, like I, believe in God, let me be clear: the God I worship gave humans the tools and the minds to develop treatments for diseases, and God wants you to use what you need while you need it. [Congress, not so much, but that’s a different post.]

If you have never experienced what I’m talking about here, I’m starting to understand just how difficult it is to see that other side. But it is as real as anything you’ve ever known. And scarier than some.

The line between disease and health can feel tenuous at best and buried beneath lava at worst. Walk it. As closely as you can. Until you are so far on the health side you forget to look for the line. Keep that frame of wellness, without shame, without blame. THAT, my friend, is discipline.

As an author with Anaiah Press, I have the privilege to review Anaiah’s releases. The first release is A Long and Winding Road: A Caregiver’s Tale of Life, Love, and Chaos by Linda Brendle, and I have waited fairly patiently to read it. Before a proper review, however, a few disclaimers:

My parents lived in an RV, traveling the contiguous U.S. and Canada for my father’s work as a funeral home OSHA inspector. In the early days (and some late days) I thought this was a crazy way to live. I mean, who could stand all that travel? Why would anyone commit themselves to such a small space for such a long time? Of course, I’d lived in the same house on a hill in rural Oklahoma for all of my first 17 years, so the logic of small and nomadic was…foreign.
My first real encounter with Alzheimer’s occurred when I met my husband’s grandmother for the first time. He had tried to prepare me, but I was unprepared. Catherine, a name that lives close to my heart now, was so progressed in the disease that she was forever locked away inside herself. No longer capable of speech or free mobility, Catherine received the loving care of her patient and husband.
I, like everyone, have two grandmothers. They were different in many ways but they both loved me. Both of their earthly stories drew to close in dementia. My mother was a caregiver for her mother. My father provided support but lived too far away to be a daily caregiver for his mother.
My mother is on a liver transplant waiting list. One effect of a diseased liver is the build up of ammonia in the body, which impacts brain activity. Ammonia disruption ebbs and flows with the disease, and I’ve watched my mother and father wrestle with when dementia is in play and when it is not. We’ve all learned the signs and symptoms, and, thankfully, medical intervention can continuously whisk away the ammonia and its impact.

In equal parts, I wanted Ms. Brendle’s book and I didn’t. I thought, as you might be thinking, that it would be altogether too difficult to read. And I thought there would be comfort in reading it. I also thought, she must be insane to take two people with dementia out of their daily living situations to an existence that was new every day!

Linda Brendle writes a ‘creative memoir’ based on a travel journal written while on an extended road trip in an RV with her parents, both of whom suffered dementia. The book maintains the travelogue essence with a dash of looking forward and backward to give moments clarity and significance.

I somewhat know how life with dementia patients is, so I was initially thrown by the book’s ability to select moments from different times and weave them together. But this aspect became a strength of the book because it revealed the process of living through a complicated time. In the moment, things can be frustrating and dark, so much so that you cannot see anything else. Reflection is key to survival and key to this book. Ms. Brendle reflects on life at different stages to place the frustrating, dark moments in context. In so doing, she relieves the reader of the pressure of every moment and guides the reader through reality-plus-reflection. The writing is not laden with the ugly sides of caregiving because those bits are consistently buoyed by brightness.

Just as I still don’t think I’d move into an RV for my husband’s job, I don’t think I’d take an extended vacation with two dementia patients in an RV. But I can appreciate those who do. From my parents’ love of the road, I learned to appreciate their lifestyle. From Ms. Brendle’s attitude of taking life as it comes, I learned to appreciate her choices. I also learned that daily life rhythms exist everywhere. What first may seem pedestrian – washing dishes, watching water levels, settling – are the very details that provide the rhythm to the reader and, I feel certain, to the real lives shared in this book.

Today, while you celebrate Independence Day (if you’re American, that is), consider all the forms independence takes. Our forefathers sought independence from monarchical rule. Our nation still fights over independence from a great many institutions. I take this opportunity to honor the soldiers, their families, and all who dedicate their lives in any portion to serving our nation’s independence, most especially when we cannot all agree on what that means. I also take this opportunity to honor each person, American or otherwise, who strives daily for independence – from tyranny, certainly, but also from disease, from bad decisions, from whatever ills plague us. National independence and personal independence are too interrelated to ever be completely separated. Without a national independence, our personal independence wavers and falls. Without our personal independence, our national independence wavers and falls. This is the crux of Ms. Brendle’s book and the reason I chose to review her book today. By maintaining her independence – to travel as she willed – she supported her parents’ independence on a level they could achieve and sustain. Such is the striving of us all.

Happy Independence Day! May you maintain your independence to support the sustainable independence of others!

Released by Anaiah Press

Synopsis

Sometimes reality really bites. Alzheimer’s has wrapped Mom’s brain into knots, vascular dementia has attacked Dad, and, instead of carefree retirees, we have become caregivers. Regardless, dreams die hard, and we somehow stumbled into the purchase of a forty-foot motor home. That’s when all four of us set out on this seven-week trek across sixteen U.S. states. Now, Dad stopped-up the toilet again, Mom wet her last pair of clean jeans, and David just announced that he was hungry. My head is beginning to pound, and I know this isn’t going to be the easygoing retirement we’d imagined for ourselves.

Linda Brendle takes you on a roller-coaster ride of emotional and spiritual challenges that many families are facing right now. Co-dependency, mental breakdowns, and finding love after divorce are just a few of the issues weaved into this journey of caregiving. Whether you’re looking for an inspirational story to help teach you how to “let go and let God,” considering becoming the caregiver for one of your own parents, or are just looking for an entertaining travel book, this story is sure to strike a tender nerve.

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A Bit About Linda Brendle

After 15 years as a family caregiver, Linda began writing to encourage, inspire and amuse other caregivers. She loves to travel and since retiring has traveled mostly by motorcycle and RV. She and her husband live in a small East Texas town where she gardens, writes and attends church.

A Bit About Anaiah Press

Anaiah Press is a Christian digital-first publishing house dedicated to presenting quality faith-based fiction and nonfiction books to the public. Our goal is to provide our authors with the close-knit, hands-on experience of working with a small press, while making sure they don’t have to sacrifice quality editing, cover art, and marketing. Books will begin to be released in digital formats beginning in Summer 2014.www.anaiahpress.com