The Man In The Mirror: Reflections On Dealing With A Family Member’s Dementia

The Man In The Mirror: Reflections On Dealing With  A Family Member’s Dementia

 

Phillip LaBorie

Perm J 2014 Winter; 18(1):92-93

https://doi.org/10.7812/TPP/13-114

Editor's note: Mr LaBorie's artwork "The Man in the Mirror".

This glass has seen some strange things, sir, whispered Poole.

And surely none stranger than itself, echoed the lawyer.1

­—Robert Louis Stevenson

My younger brother is 70 and has been diagnosed with dementia.

To me, it's a baffling disease. One minute he's here in the same room with his wife and me, the next he's talking about or interacting with a situation or event that has no apparent relation to what appears to be our current reality.

Unseen visitors flicker in and out of his mind. Sometimes they come and stand next to his chair in the living room; on other occasions, they arise unbidden in the form of dreams.

Where do they come from, these mysterious apparitions? When my brother looks in a mirror, can he see them? They certainly appear in his dreams, which he sometimes finds difficult to distinguish from his waking hours. These strange events remind me that supposedly vampires can't be seen in mirrors and they cast no shadows. However, in this case, the vampires seem to be very real, but instead of drawing blood, they're stealing my brother's mind.

For a family member who cares, these visitations are very troubling and disconcerting, because they appear with absolutely no advance notice and can last anywhere from a couple of minutes to an hour or more, leaving my brother bewildered and completely exhausted.

Are his hallucinations caused by actual dementia, overmedication (he's in almost constant pain as a result of a difficult surgical history), or stress? Most likely, it's a combination of all three.

Then there's the additional side effects of dementia to deal with as well—loss of memory, confusion, frustration, anger, anxiety, and depression.

What's a guy who wants to help to do?

You can fool the whole world down the pathway of years,

but you can't fool the guy staring back from the glass.2

 

Dale Wimbrow 

For starters, when I look at myself in the mirror, I remind myself to be honest with my own emotions and feelings and not to make judgments. I am not some deus ex machina who has just casually dropped onto the stage to set everything straight. I continually have to remind myself that an important part of my role is to be a caregiver, not a caretaker (in the possessive sense of the word). I ask myself, though, why bother when his condition suggests a one-way ticket to Palookaville?

Well, he's my brother; we're all of our family that's left. We have to look after each other. But in addition, I try to exercise what the Tao proclaims, When you see someone more advanced than you, try to learn from them. When you see someone less fortunate than you, express compassion.3

This is not a role I'm accustomed to playing, and I often feel as though I'm not doing a very good job of it. Instead, I want to break through during my brother's periods of hallucination and depression; tell him to snap out of it, get a grip, you're out of control. What's wrong with you? But as his wife continually reminds me, "You can't say any of those things, you'll just upset him and make it worse. He'll be all right. Just let him be."

And, difficult as that may be, that's what I try to do. Sometimes I'm successful. On other occasions, I get exasperated when I've heard the same story for the fourth or fifth time.

As I'm sitting here writing this at 4:30 am, my brother has been taken to the hospital. Because he's had 5 heart attacks and suffers from chronic obstructive pulmonary disease and numerous other ailments due to exposure to Agent Orange during his deployment in Vietnam—we take no chances.

I expect it may have been just a panic attack, but who knows? Three hours later, it turns out, he's fine—it was a panic attack, but what lies ahead?

I have very little knowledge about the disease, so I turned to the Internet for more information.

Given my brother's symptoms, what form of dementia does he suffer from?

Is it Alzheimer's? Vascular? Dementia with Lewy bodies? Mixed? Frontotemporal? A combination of all of the above? Something else? After an hour of trying to figure it out, I finally asked my brother, "What type of dementia do you have?"

He replied, "They don't seem to know."

Not a very comforting diagnosis. And even if I did know what type of the disease he suffers from, what good would it do?

His condition is further exasperated by periods of acute anxiety as we frantically search the house for missing or misplaced documents, car keys, credit cards, glasses, his wallet, the list goes on. Sometimes our hunt is successful, sometimes not. However, it all contributes to the unsettling What's next? scenario.

The best part of one's life is the working part,

the creative part. Believe me, I love to succeed …

However, the real spiritual and emotional excitement is in the doing.4p49

Garson Kanin

The good news is that all of these symptoms and stresses disappear when we're making art together. He and his wife have been collecting and polishing beach stones for years with the idea of turning them into jewelry. The space under the house is now full of stones, some ready for polishing, some ready for drilling, some whose future is as uncertain as ours.

In addition to collecting the stones, he has designed a small wooden vise to hold them when they're being drilled to eventually become necklaces and bracelets.

I asked him about the vise and how he came up with the idea.

"It came to me in a dream," he said.

To me, that's just amazing. How can he have such threatening dreams on the one hand, and such revelatory ones on the other?

Drilling the stones by hand is difficult and very labor-intensive work and calls for patience and absolute accuracy. We work as a team. My brother handles the actual drilling, he's the maestro; as his trainee/assistant, I hold the vice with the stone in place and replace the water surrounding the vise as needed. (Because of the intense heat that is generated, all drilling has to be done under water and executed with diamond tip drills.) I also help to select the stones to be drilled. Only certain ones will work well and they have to be culled from a huge assortment of sizes and shapes.

Production proceeds at a very slow rate—on a good day, we might get six or eight perfect specimens. But in spite of our meager output, our sense of accomplishment is wonderful when we complete an individual drilling without breaking the stone. The LaBorie brothers have done it again!

The process keeps us very much in the moment and also gives us plenty of time to talk about things including our numerous adventures in the past and what's happening in the world today. We don't discuss the future very often, although at times I suspect we both silently speculate about what it might hold.

Instead, I try to keep any discussion about possible outcomes as practical as possible. "Do you know where your will is? Do you have a living will? Have you given your wife power of attorney?" I've come to learn this is a difficult area to manage, especially with memory loss, but that it is essential information that we may eventually need, with no certainty of what the timing will be.

It's also important for all of us to remain as positive as possible. "Don't give in. Don't lose hope. Enjoy every day as much as possible," I tell him. And perhaps even more important, "When you feel pain, depression, anxiety, whatever, don't put off seeing your doctor." To me, it's an absolute wonder how simply changing meds can change moods.

But then, there are those days when he has long periods of absolute clarity, penetrating insights, and boundless energy. We laugh, kid around, and reminisce. I rejoice in the connections we are still able to make and the bridges we are still able to cross together.

Some other things that help us stay in the moment:

Occasionally we walk together, but most of the time he and his wife set out at a brisk pace for parts unknown in the blistering South Carolina summer heat. I think that's an important part of their personal time together and I stay out of it.

His wife also reminds me that I need to involve him in routine day-to-day activities. Simple things, like loading and unloading the dishwasher, taking the garbage to the landfill, all the stuff that needs doing around the house. I shouldn't take it all on—by allowing him to participate, I empower him.

The simplest acts create opportunities for him to feel wanted and needed, and most of all, not to feel useless. Sometimes it's not that easy to do—it's much quicker if I do it myself, but that leaves him with nothing to do. Not a good place for him to be.

And, I need to ask for his opinion and advice about what I'm doing. "Should I restore this toy and try to sell it on eBay? What do you think about this art project I'm working on? I‘ve picked up a writing assignment and would appreciate your input."

I like a state of continually becoming,

with a goal in front and not behind.4p56

George Bernard Shaw

Where will all this end? What will his life and his wife's become in the future? What will become of mine? Where will the next string of events take us? I have no idea, but somehow I'm not worried. Things will work out. Why? Because I think I've learned more about my identity from someone who is losing his than I did throughout my life. I've come to realize that I'm not as nice a guy as I thought I was. I'm not as forgiving and forgetting as I might be. I'm still too selfish with my time. I can be resentful and critical. But I am slowly learning to be more charitable and understanding of the needs of others—not just my brother and his wife, but perhaps the world in general.

As dementia creeps into my brother's life, it opens new doors for me. Some are difficult to pass through, to accept and understand. Others open new vistas — including the view of the Atlantic Ocean from the beach, watching egrets go about their business in the salt marsh, the tranquility of a quiet Southern street, sitting on our front porch reading a book or keeping an eye on the approaching huge thunderheads in the sky. All of these and much more have given me a positive perspective on life and living. They make me appreciate how important making art is to me and how helpful art can be in keeping dementia at bay, at least for the moment.

My goal nowadays when I look in the mirror is to make the most of the time my brother and I have together.

I've learned that people with dementia may forget many things, but those around them need to remember why we're there. At least I do.

References

   1.  Stevenson RL. The strange case of Doctor Jekyll and Mr Hyde. New York, NY: Books, Inc.

   2.  Wimbrow D. The American magazine. New York, NY: The Cromwell Publishing Company; 1934.

   3.  Deng M-D. 365 Tao. New York, NY: Harper Collins; 1992.

   4.  Gardner JW, Reese FG, editors. Quotations of wit and wisdom: know or listen to those who know. New York, NY: WW Norton & Co; 1996.

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