Not In A Million Years

Still swinging in the wind

Five years ago I started this blog by posting a photo of myself on the bridge spanning Grandfather Mountain near Blowing Rock, NC. Taken a year earlier the photo has always symbolized my trepidation about retiring. Today, it symbolizes my apprehension about the future. I remind myself daily that today is all I really have, all any of us have. The past is in the past. The future has yet to unfold itself. Enjoy today.

Out of deference to Martin I have not written about this part of our journey, but the time has come where his condition is advanced. I don’t think there is anyone in our circle who isn’t aware of it. It is also time for me to start writing about it. My experience might help others. It is the reason I have not finished my retirement book. It’s hard to produce an Ernie J. Zelinski type How To Retire Happy, Wild and Free when you have a huge unanticipated cloud hanging over your retirement.

As an unexpected caregiver, I have created a good support network, including a therapist I see once or twice a month. During one session I sat with her silent in my thoughts. She said, “I’ll bet you never saw this coming.”

“Not in a million years.”

She continued. “I’ll bet there are some days you could just go outside and scream.”

I nodded. Not just some days — every day. And once in a while I go to the top of the hill on my six acres and do just that. As a caregiver much of my time goes to doing everything and anything requiring reading, writing or verbal skills. There are my doctor’s appointments and Martin’s, my emails and his, snail mail, financials, repairs around the house, the art studio we decided to build, shopping, pumping gas, reading recipes so he can cook, programming the thermostat and anything else requiring the understanding of words. Some days the pressure is enormous.

Like a coyote stealthily slipping through the night woods in search of prey, it started in 2010 with personality changes in Martin. They were attributed to stress and depression. Averse to taking medications, he refused antidepressants. It took years of intermittent doctor’s visits, struggle with Martin’s denial of the facts, cognitive tests, blood work, CT scans, MRI’s, and finally one very good neurologist to reach a diagnosis of Primary Progressive Aphasia (PPA). That was two years after an initial diagnosis of Aphasia, which is usually caused by a stroke or brain injury, and of which there are several versions of the disease.

Aphasia Poster

What is Aphasia? It is not Alzheimer’s. It is a loss of language skills — reading, writing, verbal abilities and comprehension of the spoken word. According to the Aphasia Association most people with PPA retain the ability to take care of themselves and pursue hobbies. However, they confront a 60% chance of the brain deteriorating into Alzheimer’s. That said, Alzheimer’s drugs do not help with Aphasia. Because so few people have this condition — it’s estimated only 200,000 have the PPA version — there are no drugs and most physicians know little about it. Martin’s neurologist only sees one or two cases a year. Obviously, this is one of the reasons a solid diagnosis took so long.

Nothing makes a person stop and realize what is important and what isn’t like a diagnosis of a serious disease. Our priorities definitely changed. Everything came into focus.

Oh, I threw my pity party, a long one in fact, of about a year. My negativity almost swallowed me up. It took time to realize this is not about old age. I had polio at age 3, lost my oldest brother in a car accident when I was 7, followed by the loss of cousins from brain tumor, leukemia and other tragedies similar to my brother’s death. Adversity can happen at any age. One day I asked, “Why us?” A voice inside answered, “Why not us?”

Bicycling is good for the brain

Martin still bicycles a hundred miles a week. He creates all kinds of art. He cooks, cleans and works on the property. I have to leave the washer and dryer on the same cycle. If I move the dial, he doesn’t recognize it has been moved. I have to watch for things like his microwaving fresh carrots in the plastic bag they came in from the store. When he sets the table, I may find a spoon and knife instead of a fork and knife. It could be worse. It may get worse. But we have today and today is good.

Along with prioritizing comes a focus on what works best for both of us. As a caregiver I often put Martin’s needs first. When his neurologist asked him what stressed him most, he answered without hesitation, “Other people.” As an extravert, not having people to the house as often has been difficult. I do most of my socializing outside our home.

Martin’s bird among coneflowers

While it’s important for Martin to remain engaged, his neurologist recommends limiting any situations that may cause him anxiety. Speaking of other people, some understand that; some do not. Since all looks normal with Martin’s appearance, there are those who do not understand the unseen changes in his brain have rendered him a different person than he used to be. Their presence alone can cause stress as he struggles to converse with them and comprehend what they are saying. We learned to distance ourselves from those who are not understanding about our new normal.

As my time is taken up more and more with caregiving, I have grappled with discontinuing this blog. I’ve decided to post once a month instead of foregoing it altogether. It’s important to me and I feel like it is to my readers. I have started rewriting my retirement book to speak truth about my journey. No, retirement is not always rosy. But, neither is life at any juncture. This is just one more change, one more challenge, one more adjustment. Even in the face of adversity, even with an event I would never see coming in a million years, there is still much to be celebrated. Enjoy your day, no matter what it brings!

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A Specter Among Us

Aphasia Poster

The big house, the fancy car, the expensive furniture and designer clothes will not make anyone happy. Finding a cure for diseases like dementia will. As I watched the PBS special on Alzheimer’s: Every Minute Counts, I know the feeling of urgency first hand. With the aging of baby boomers dementia is expected to become an economic train wreck taking down the health care industry and with it, the economy.  We cannot even begin to calculate the emotional toll.

While most people are familiar with Alzheimer’s, there are many types of dementia the general public is unaware of. They are just as devastating to the victims, families and our communities. They are even more under researched than Alzheimer’s.

Joey Daly has educated the public about Lewy body dementia through his YouTube chronicles of his mother, Molly as she slips away from him. He calls his efforts Molly’s Movement (https://mollysmovement.com). As NBC Nightly News reported, “Before these videos, you couldn’t explain it to people,” Daley said, adding that he couldn’t watch his mother deteriorating without giving the ordeal some purpose.” The videos are hard to watch. They are painful and powerful.     (http://www.nbcnews.com/news/us-news/battling-dementia-mother-son-s-incredible-journey-n757196)

Then there are the Aphasias. When you say, “Aphasia” almost everyone says, “What’s that?” To me, it is the most hideous disease no one has ever heard of unless they know someone who has it. The National Aphasia Association defines it as “an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.” (https://www.aphasia.org)  One form of Aphasia is Frontotemporal Lobar Degeneration (FTD).  It is most likely to lead to Alzheimer’s.

There are only (only!) two million people in the United States with Aphasia. Perhaps the most famous is former Arizona Congresswoman Gabby Giffords who was shot in 2011. There are several types of Aphasia. And like other forms of dementia, it is expected to rise in numbers as baby boomers grow older.

June was National Aphasia Awareness Month. When I posted that on Facebook, it received barely a notice. I have no idea if that is telling or not. I do know it’s my personal experience that most people don’t want to consider they may have one of these diseases someday. Sticking our heads in the sand won’t make it go away.

Lobbying our governments to fund more research and as quickly as possible may make it go away. We have spent trillions on wars when the biggest threat to our national security is right here in our own backyard. Write your representatives. Inform yourself. Educate your family, friends and neighbors. According to the Alzheimer’s Association there are about 5 million people in the US today with Alzheimers alone. By 2050 that number will have swelled to a train wrecking 28 million! The clock is ticking. Every minute does count.