Unforgettable Characters

Have you ever thought about how life is a story and although you are the main character, you have a full cast of supporting characters? As your supporting characters move in and out of your life, they shift your trajectory, sometimes slightly, but other times turning it into a new direction. Our heroes (unless they fall from grace) affect us positively and put us on an upward course. The villains, sometimes disguised as friends, can sink us to abject misery.

Of course, there are walk-on characters who are so unimportant that they don’t make any impressions. Occasionally, these casual passersby will play a pivotal role in your story.

In all good stories, you need a romantic lead. Of course, that would be Jim. He had so many characteristics that made him perfect for the role. Our backgrounds were similar in some ways and polar opposites in others. We were both from big musical families, but I had lived in one house throughout my entire childhood, but Jim had lived in several states and numerous houses—or even under bridges and under trees. Jim was intelligent, musically talented, generous to a fault, highly principled, honest, and had a big heart. Our story took a Nicholas Sparks turn, ending with a flood of tears and sadness. Jim was the character in my story that taught me that love could endure through good times and bad.

Jim’s life, dementia, and his death catapulted my story into a different genre. I had been living a dull, routine life: waking up, going to work, spending my evenings at home doing a few chores, watching some TV, reading my book, sleeping, repeat, repeat, repeat.

I literally walked into a new chapter of my life when Jim and I went to our first Memory Walk on a hot September day in 1998. And there, I met a feisty seventy-some-year-old ball of fire named Helen Hanneford. As we proceeded to walk from Liberty Park to the downtown area, Helen would occasionally blow her hunting horn. We walked into the VFW and a man told her if she would blow her horn, they would take up a collection. She was happy to oblige. I only saw her one other time, but I never forgot her. I opened our local newspaper earlier this month and read a death notice for Helen Hanneford, Slater. She passed away at age 93 on January 30, 2020, at her home. Yes, I would just imagine she still lived at home and occasionally blew that hunting horn. Helen was the character who taught me that volunteering could be joyful.

Being a part of the Alzheimer’s Walk community of volunteers brought another inspiring character into my world, Ted Distler. Ours began as a friendly rivalry—Sedalia Walk VS Jefferson City Walk, but rivalry aside we wholeheartedly supported each other’s fundraisers and walks. Ted was one of those guys who always had a joke, a hearty laugh, and hugs for his friends. Ted was in survival mode as he cared for the love of his life who had Alzheimer’s.

We talked on the phone frequently as we kept abreast of how things were going in our separate lives. Ted and I would occasionally “meet in the middle” for breakfast and conversation. “Have you seen that movie The Notebook?” he asked me one time. I told him I had—another one of those sad Nicholas Sparks’ stories. “I hope it’s that way for Norma and me,” he said. He wanted them to die at the same time, so he wouldn’t have to know life without her. As his story ended, he passed away a short time before his beloved wife. He came close to the Notebook ending he wanted. Ted was the character that taught me to treasure my friends because they leave a gaping hole in our lives once they are gone.

In 2001, I became an advocate on the national level. At my first Alzheimer’s Forum in DC, I met Jane, Kathy, and Sarah. I immediately felt a connection to these three women unlike any friendship I had ever had in my life. Our individual journeys connected into a shared sisterhood. We are truly sisters of the heart. Each year, our secret radar allows us to find each other quickly in the crowd of more than 1,000 advocates—all dressed in purple. It seems that we can pick up our conversations from the previous year almost in mid-sentence. These three characters have taught me that the closest friends can live the farthest away.

Life just wouldn’t be a story without all of the amazing characters who walk in and out of our lives.

Copyright © February 2020 by L.S. Fisher

http://earlyonset.blogspot.com

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Hearing Voices

To meditate you are supposed to empty your mind and concentrate on breathing. My internal conversation goes something like this: Breathe in…what should I fix for supper? I need to pick up a loaf of bread…breathe out…did I lock my car? I really need to print those forms. I’ve never had any luck emptying my mind. It just doesn’t work for me because my brain never shuts down its internal conversation.

Our internal voices are where we find the motivation to become a voice, or an advocate. The motivation to be an advocate for a cause you believe in comes from the inside out. Seeing the devastation dementia had on Jim was motivation enough for me.

My first introduction to advocacy was at the Alzheimer’s forum in 2001. Those first few years, we had to educate our legislators about the devastation of Alzheimer’s and related dementia. Eventually, everyone knew about Alzheimer’s, either from us or from personal experience. Over the years, we advocates have become better trained and well organized under the guidance of the Alzheimer’s Impact Movement (AIM).

This year I’ll be making my twentieth trip to DC to visit with my senators and my representative, Congresswoman Vicky Hartzler. In preparation for the DC trip, Jessica Snell, Jerry Dowell, and I met with her field representative Rachel Gilroy and District Director Austin Kramer.

We discussed AIM’s federal priorities:

1)      An Additional $354 Million for Alzheimer’s Research. We are still playing catch up with Alzheimer’s research funding at NIH after being woefully underfunded for more than a decade. Our only hope of staving off a devastating blow to Medicare and Medicaid is to find effective treatment or a cure. On a personal level, I don’t want anyone to go through the heartbreak of dementia.

2)      An Additional $20 Million for the BOLD Infrastructure Act. The BOLD Act uses the traditional tools and techniques of public health to fight Alzheimer’s on a local level. Alzheimer’s Centers of Excellence will be established across the country. Local health departments can implement interventions to help with early diagnosis, promoting healthy lifestyles to reduce risk, and data collection. The Act also strengthens the role of the CDC as they lead public health efforts and provide funding on the state level.

3)      Younger-Onset Alzheimer’s Disease Act (S.901/H.R.1903). Persons with younger-onset dementia do not have access to the same support and services as Americans aged 60 and older. Jim was only 49, so we were turned down when we asked for help through the Division of Aging. The Older Americans Act (OAA) reauthorization includes giving access to these services to persons with dementia regardless of age, extends the RAISE Family Caregivers Act from three to four years, and includes elements of the Supporting America’s Families and Caregivers Act. These successes are largely because of the thousands of dedicated Alzheimer’s Advocates who don purple sashes and visit Capitol Hill annually. As Congresswoman Hartzler’s ambassador, I was pleased that she was one of the co-sponsors.

4)      Improving HOPE for Alzheimer’s Act (S.880/H.R.1873). In 2017, the Centers for Medicare and Medicaid Services allowed clinicians to be reimbursed for providing care planning for cognitively impaired individuals. As most of us who have had a loved one with dementia know, care planning is a vital part of improving quality of life. However, few people knew about care planning for dementia and the service was not widely used. The Improving HOPE Act would require Health and Human Services to educate clinicians on the service and report the barriers keeping individuals from using care planning. Our role as advocates will be to seek co-sponsors.

Do you want to be a voice for Alzheimer’s? You don’t have to go to Capitol Hill to have your voice heard. One of the ways you can lend support is to join the Alzheimer’s Impact Movement at Alzimpact.org ($20). You will receive updates and the online tools will make advocacy easy.

During the AIM Forum, we use an app to keep you updated on the message we are taking to our legislators. You can pick up your phone, text, use Facebook or Twitter to add your voice to ours. If enough people whisper the same message, it is much more effective than when one person shouts.

Copyright © February 2020 by L.S. Fisher

http://earlyonset.blogspot.com

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From the Ashes

Recently, I’ve been thinking about how our lowest moments give us the opportunity to rise from the ashes. We can emerge as something new from something that has been destroyed.

I helped celebrate the first service at our new church building. The historic church was destroyed by fire in 2016. Unable to rebuild in the same location, a new site was chosen for a new “traditional” church. Through faith and hope, a beautiful structure metaphorically rose from the ashes.

I can’t think of anyone who hasn’t felt his or her world is in a shambles from time to time. When someone receives a terminal diagnosis, they feel the burden of ashes. It takes determination and optimism to rise above the ashes and continue living. I have seen amazing people who have received a diagnosis of Alzheimer’s and immediately kicked into action to advocate for research dollars. Often, these advocates are aware that should a treatment be discovered, it would be too late for them.

Chronic disease creates a heap of ashes. Dealing with pain every day, wears a person down. Arthritis can make every joint in your body ache, and make movement a challenge. Especially, when a disease has no cure, and you know your health is only going to worsen and never get better. It is hard to see a loved one suffer, and it can foster a feeling of hopelessness and helplessness, if you let it.

Life can change in a heartbeat. Couples marry. Babies are born. We can feel so blessed at times, and at other times wonder where it all went wrong. Life is full of surprises, and a rollercoaster of separations and reunions.

When death separates us from those we love desperately, it takes fortitude to overcome the sorrow. There is no time limit on grief.

The trick is to build on the ashes instead of being buried beneath them. It’s a lot of hard work to wallow in self-pity and sorrow. Life is certainly more enjoyable when we concentrate on the good times and not the sad times.

When I think about ashes, I think about campfires. That makes me think about Colorado and the Rocky Mountains. I think about early morning coffee, breakfast cooked on the camp stove, hiking, and animal watching. The memories are like a thousand wings lifting my spirits on the dreariest and saddest days.

As long as I walk this earth, I hope to rise from the ashes of loss by appreciating what I still have. Life will be what I make of it, not what it makes of me.

Copyright © February 2020 by L.S. Fisher

http://earlyonset.blogspot.com

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