How My Mother’s Dementia Got Me In The Best Shape Of My Life

I’m one in 15 million.

It’s about as far as you can get from being one in a million.

When you are one in a million, you are an idiom of unequaled proportion.

But increase that million 15 fold and instead of being more rare or more extraordinary as the math logic should conclude, you simply become one of the masses.

That’s me. One of the 15 million Americans who is a caregiver to someone with dementia/Alzheimer’s.

There are so many of us that when I mention my mother has dementia, the response is almost always,  “so does/did my mother/father/grandparents/aunt/uncle.

Not a  surprising  response considering:

  • Alzheimer’s Disease is the 6th leading cause of death in the United States
  • More than five million Americans are living with the disease
  • One in three seniors dies with Alzheimer’s or another dementia
  • About 15 million caregivers last year provided an estimated 18.1 billion hours of unpaid care.
  • Every 66 seconds someone in the United States develops Alzheimer’s Disease *

What any caregiver will tell you if they are being completely honest is that taking care of someone with Alzheimer’s is scary. It will bring you to your knees and even if praying is not in your wheelhouse, you find yourself wishing it were, and wishing you could pray that this is NOT how your life ends.

Every time you look in the face of a loved one who has amyloid plaque suffocating their brain cells, you don’t necessarily empathize with their struggles to use a microwave,  dial a phone or master the new remote Comcast forced you to get when they upgraded the service to HD.  Sometimes, often times, instead of the empathy they deserve, you feel frustration or fear.  A lot of fear. Is this me in 25 years?  And you think, please, anything but.

When you are a caregiver to someone with dementia, your memory becomes your most precious commodity. Anytime you think it’s at risk –  when you forget a word, the name of a movie or book,  or person- famous or not- it’s like you channel  Red Foxx,   ” This is the big one! You hear, that, Elizabeth? I’m coming to join ya honey.”

You Google How To Prevent Alzheimer’s and get sidetracked taking an online memory assessment. They promise to email the results in 15 minutes. It’s thirty minutes and counting. Did they assume you would forget you were waiting for the results? Did you type in the wrong email?  It’s been almost 24 hours, and I still don’t know if my answers earned me a “no worries” or an “uh-oh.”

You check off the list of things you should do to keep the invader at bay.

Social connections and  Intellectual Activity.  Check.

Healthy diet. Check minus.  I do eat those Omega 3’s , but I also have a penchant for treats and carbs.

Physical Activity.  Check Plus.

Did you know that regular physical exercise can reduce your risk for developing Alzheimer’s disease by up to a stunning 50%? Moreover, studies have shown that women from age 40 to 60 who exercised regularly were seen to have a dramatic reduction in memory loss and cognitive decline. That’s right: They kept their brain power at optimal strength! More recent findings suggest that an overall active lifestyle is the key to brain and body health.

To see the best benefits of your exercise program, the latest research reveals that the magic number for maintaining cognitive fitness with age and preventing Alzheimer’s is to work up to a level of 150 minutes per week of a combination of cardio exercise and strength training. Great ways to get in your aerobic exercise include brisk walking, jogging, dancing, swimming, and playing tennis, or going to the gym and utilizing an elliptical, treadmill or stationary bike. – Alzheimer’s Association

 

This is where I excel. I exercise a lot. In all fairness, I have always been an exerciser but taking care of my mom has made me an extreme exerciser. It’s my way of escaping from the house. Sure, I need to take care of her basic needs and make sure she is safe, but her circumstances make it difficult to stay home for significant stretches of time.

Her day and evening consists of four things: sitting in her chair in the living area and talking to herself nonstop;  sitting in her chair and sleeping; sitting in her chair and watching TV.  The TV is always set to Fox News and at a volume that should have the neighbors complaining. Given my hate affair with that particular network being forced to listen to Bill O’Reilly spew anything should be considered cruel and unusual punishment.

The exception to all this sitting is her daily walks on the skyway system—- a system that connects the buildings downtown Minneapolis, so you don’t have to walk outside in inclement weather. There are about nine miles of connected skyways in the city. My mother uses about two blocks of that.

At almost 91,  she still loves to walk and miraculously she doesn’t’ get lost.  In her mind, she is walking an hour a day. Every chance she gets she will tell you that the experts say you should walk an hour a day.

In reality, she walks about 10 minutes and then visits a shopkeeper who should win the angel of the year award because she welcomes my mother and allows her to hang out in the shop as long as she wants.

The rest of the time she sits in that chair.  I have no doubt that she is happy and this is exactly what she wants to be doing. Yet, for me, seeing her sitting in the chair hour after hour, day after day, creates an existential crisis, or in more basic terms – Hat tip to Peggy Lee-   ” Is That All There Is?”

Others may find solace in a bar, but I find solace at the barre, yoga studio, kettlebell class, Pilates, TRX,  BODYPUMP  and occasionally some aerial yoga.

Some of my favorite things. My Pilates Pro Chair, portable kettlebells, yoga bolster and yoga strap. flex bands and my Wolky walking shoes.

Until a year ago, I tried to take a daily class – part social connections/part exercise. Then I joined ClassPass. When I joined in 2015, the program allowed unlimited classes for a set fee of $89 a month. (They have since revamped that plan and I am now limited to 10 classes a month)  Back then, for the amount I was paying to a single gym with just barre and some BODYPUMP, I could go to hundreds of studios that previously were not in my budget – -like Pilates reformer (typically around $30 a class).

It was the perfect storm. A need to escape my house and my head and a venue where I could mix and match workouts to meet my various fitness goals: strength, cardio, stretching and flexibility training.

Many days – okay most- I take an early morning class and then an evening class – what I call my escape class.  The doubling up started because there were so many classes I wanted to take and just not enough days.  The doubling up had the added benefit of getting me out of the house every evening.  I worked out a system where if I did a hard strength training or cardio class in the morning I would do a  less intensive workout like yin yoga in the evening.

Then there’s my daily goal of 10,000 steps that I measure compulsively with my Fitbit. In the summer, most of the steps are from walking my dog. In the winter, I rely on my treadmill desk. I am on it right now as I am writing this post. The best kind of multi-tasking that there is.

Sharing my fitness regime is in no way a recommendation or even a suggestion that this is necessary or desirable for most people.

I know it’s not. I engage in this much physical activity because it’s fun for me.

I like the way I feel after deadlifting a 24 KG kettlebell.

I am energized, not depleted, after a BODYPUMP class. (Does this mean I’m an exercise extrovert while in my real life I am a social introvert?)

Through Pilates, I can stretch my body in ways I never could before and I’m convinced under that layer of fat that clings to me for dear life, I am sporting a hidden six pack. A life goal is to one day confirm this.

As for barre, there are a ton of emotions with this class. I began my exercise life at the barre. My mother was a ballet teacher. While I have always been quick to point out the many ways she and I are different,  I owe my love of exercise to her. She modeled it. Until the dementia, she regularly walked two miles a day, swam a half mile and threw in some stretching. She did this until she was 87.

The day she said she was quitting the Y was the day I knew with certitude that something was very wrong.

My mother’s commitment to exercise didn’t save her from the ravages of Alzheimer’s.  Then again, for most of her life, she carried an extra 70 pounds because while she was committed to physical activity, she was also committed to bread.

She did little to exercise her brain and wasn’t much for strengthening social connections. Fighting Alzheimer’s is not a one solution battle.  My exercise regime alone will not do it.  It has to be fought on all fronts.

The encouraging news for those of us who stare at the ravages of this disease on a daily basis is that we do not have to accept the inevitability that this is our future.

As for my future, I plan to continue living my life as a warrior against Alzheimer’s. I won’t predict the winner, but I guarantee I’ll be a very strong opponent.

She’s so lucky, she thinks, to have a girl, because  girls look after you when you get old; Boys just leave home, eventually going to live cheek by jowl with their mothers-in-law.

And then she curses herself, because it goes against all her feminist principles-requiring her daughter, her clever Cambridge-educated daughter, to wipe her wrinkly old bottom and bring her meals and audiobooks, probably while juggling toddlers and some pathetic attempt at a career.

Missing, Presumed – Susie Steiner

 

*I found all these facts on the Alzheimer’s Association website. Just a small quibble with the every 66 seconds factoid. It does feel a bit over the top. I get the point: Dementia is a growing health care issue.  But, and this is a big but, it is not like getting stung by a bee when you are allergic and one minute you are fine and the next you are in anaphylactic shock. Dementia is a progressive disease that people probably started developing years before the first symptoms.

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