Sunday, April 28, 2019

The Road Less Traveled

A group of my former classmates and I are planning our fifty year class reunion. Several have brought in photos taken on our senior trip to the Smoky Mountains. As they look at the tiny, blurry photos and reminisce, I realize how little I remember about the trip. I remembered the Grand Ole Opry. I remembered the towns of Gatlinburg and Chattanooga, Tennessee. I remembered traveling to the top of the mountain in a cable car. But as far as the shenanigans—the fake gun fight, the bathroom window on the bus falling out, a group going out looking for a place to bowl and getting stopped by the local police—I have zero recollection.

“I know I wasn’t drunk, so I don’t know why I can’t remember all the things you remember,” I said to the group.

“I can’t remember much about it either,” Cindy admitted.

Maybe the reason the memory of the senior trip faded so quickly for me was because Jim and I traveled so much. We always went west, but once in a while I would suggest the Smoky Mountains, but it just didn’t work into our plans.

Now, oddly enough, on close to the fiftieth anniversary of the senior trip, we will be taking our girls’ trip to South Carolina. On the way, we will be going through the Smoky Mountains. For me, this is an area I haven’t been to in half a century. It seems just a little odd that I went to a meeting with the planning committee and drove a few blocks to my mom’s house to plan a trip to the same area.

One thing I’m sure of—a lot will have changed in fifty years. If nothing else, I have changed. I can’t help but wonder if I’ll visit certain sites that will bring about a feeling of déjà vu. Will the places call forth events stored in locked parts of my brain? Will I feel sadness for those in the class of ’69 who now reside in eternity and not with us?

I have heard that some of my former classmates have memory problems. I don’t know that anyone has been diagnosed with dementia, but then not everyone receives a diagnosis. According to the statistics, one in ten of us will develop Alzheimer’s in our lifetimes. We have already reached the age of vulnerability, and are too old for younger onset dementia.

It’s a little bit concerning that I can’t remember much at all about the senior trip, but it would be devastating to not know the people I love. Recently, I’ve visited with two men who held an important role in my life. One looked at me and said, “I don’t know who you are.” So, I told him who I was. The other gave me a hug, but never talked or showed any recognition in his eyes. You have to hate a disease that does that to people you love.

Although it made me sad, I didn’t regret seeing either of them. One, I was told, was just having a bad day. The other, I was told, can’t remember anything anymore. His family is just spending time with him and helping him enjoy life as much as they can.

Unfortunately, the road less traveled is often the one that leads to special care units in nursing homes. Excuses abound, but sometimes people just don’t have the fortitude to give unconditional love to those who no longer seem to even know who they are.

In the end, when they can’t remember you, you still remember them. If the person you are hesitating to visit played a major role in your life, you are cheating yourself. If you don’t share hugs, words of love, and bring a smile to someone’s face, you are the big loser.

Travel that road. Take the time to hold fast to the memories that linger in your heart. Life has robbed a person with dementia of their memories, and he lives only in the moment. The more moments you share with your loved one, the more happiness you bring into his life, and yours. As we travel through life, we need to enjoy the journey before we reach the final destination.  

Copyright © April 2019 by L.S. Fisher

Thursday, April 18, 2019

Cruel April

Some dates are seared into our memories and leave scars on our hearts. For me, that date is April 18, 2005.

When I flipped my calendar to April, I didn’t think of flowers, thunderstorms, morel mushrooms, or even mowing the grass. I mentally, went back in time and remembered that April was the cruel month…when the beginning melded into the end. The good guy lost, and the relentless disease won.

I’d been so busy this month that it didn’t seem possible that today was already the eighteenth day of the month. The month began in Washington DC at the Alzheimer’s Forum. Then, there was the catching up to do with all the projects I’d put on hold to take time away, including the annual scourge known as taxes.

Today, the eighteenth of April, was a busy day. At nine o’clock this morning, I drove to Versailles for a 50-year class reunion committee meeting. Reconnecting with my former classmates has been a positive experience. As usual, when our work was done, we went to lunch.

After lunch, I picked up my mom and my aunt to go to the nursing home for our monthly music gig. We began setup at 2:00, and began our hour-long program at 2:30. One of my former classmates had brought some scanned photos for the reunion book and stayed to watch the program. “This is a lot of talent in one family,” she said.

My mom and I had a short visit over a cup of coffee, and then I headed home. The sun was setting in the west by the time I pulled into the garage. The day was almost done. The black aura lifted some as the day dwindled down.

Tonight, I put the leash on the dog, slipped on my coat, and stepped out into the darkness. The clouds parted and the moon slid into view. 

As often happens in the still of the night I was left with my thoughts and memories. The sorrow seeped into the fiber of my being, and hid beneath the surface. I thought about how Jim had always been a part of my life, and always would be. I remembered how Jim, a man of faith, told me that death was merely closing one door and opening another.

A cold breeze sent shivers through my body. It was as if he had whispered to my heart: the end has melded into the beginning, and the good guy won after all.

Copyright © April 2019 by L.S. Fisher

Wednesday, April 17, 2019

Cherry Blossoms and Soaring Kites

My trip to the Alzheimer’s Forum this year coincided with the Cherry Blossom Festival and the Blossom Kite Festival. It so happened that when my traveling buddy Jennifer and I ventured out, we ran into human traffic jams every step of the way. It was a little claustrophobic at times, especially when we were stuck at the metro exit behind a crowd of slow moving people.

Capitol Hill didn’t seem quite as congested as usual this year and for the most part the security lines moved and a decent pace. It helped that we weren’t rushed between our appointments.

After our forum training and updates on all things Alzheimer’s, we were prepared to speak of Alzheimer’s as the public health crisis it has become. We had four asks for our legislators:

1)      Increase Alzheimer’s research funding at the National Institutes of Health (NIH) by $350 million for fiscal year 2020. Currently, 5.8 million Americans are living with Alzheimer’s disease. Without a medical breakthrough, that number will triple in a generation!
2)      Support $20 million in fiscal year 2020 to implement the BOLD Infrastructure for Alzheimer’s Act at the Centers for Disease Control and Prevention (CDC). BOLD will establish Alzheimer’s and Related Dementias Public Health Centers of Excellence, fund public health departments, and increase data analysis and timely reporting.
3)      Co-sponsor the Improving HOPE for Alzheimer’s Act (S. 880/H.R. 1873). In 2017, only 1% of seniors living with Alzheimer’s received the Medicare care planning benefit. We must educate providers and individuals with dementia about available care planning services.
4)      Co-sponsor the Younger-Onset Alzheimer’s Disease Act (S. 901/HR 1903). This would allow individuals with younger-onset dementia to receive services provided under the Older Americans Act, currently available only to Americans over the age of 60.

Our first visit of the day was with Senator Blunt who has become a champion for Alzheimer’s. He greeted us, began to speak of the tremendous cost of Alzheimer’s, and compared it to the defense budget.

Next, the Missouri delegation attended the Senate Hearing on Alzheimer’s disease. In his remarks, Senator Hawley recognized our fellow advocate Lonni Schicker and briefly told about her younger-onset diagnosis. After the hearing, we visited his office.

My last meeting of the day was with Congresswoman Vicky Hartzler’s office. I only met with her briefly since she had to go to the floor for a vote. We finished our visit with her senior legislative assistant, Bryan McVae.

After speaking to our legislators, we came away with the feeling that we are in this battle together. This is different from when we used to have to spend all our time convincing them that Alzheimer’s affects all of us in one way or another. Our hopes are flying as high as a Blossom Festival kite that by working together, we can, and will, find a cure.
For the past few years, I’ve stayed an extra night to avoid the nail biting rush to the airport. I’d much rather be way early than just a few minutes too late to catch a flight home. At the airport, we came across some fellow advocates for a “selfie.” Then, we disbursed to our separate homes to continue the fight to end Alzheimer’s.

Copyright © April 2019 by L.S. Fisher