Early Onset Alzheimer's - Encourage, Inspire, and Inform: September 2022

Thursday, September 29, 2022

Forget Me Not

The night before the Sedalia Walk to End Alzheimer’s, I found a package of paper forget-me-nots. We sell the flowers for $1 at fundraising events, but I didn’t have any events coming up. I posted on Facebook that I would make a donation to the Alzheimer’s Association for every name given to me. I would put their loved one’s name on a forget-me-not and display them on my vendor table at the Sedalia Walk to End Alzheimer’s. In all, I had about twenty names and donated $5 each.

The morning of the walk, I began taping the forget-me-nots to my table. The wind caught one of the flowers and I chased it down. The place of honor went to Jim’s forget-me-not. I had written “Grandpa Jim” and “Great Grandpa Jim” around the edge. Jim loved being a grandpa, and he loved his grandchildren with all of his heart. He would have equally loved the grandson and great-grandson that were born after he passed away.

Alzheimer’s forgetting is different from age-related memory problems. I forgot to send out my fundraising letters until a couple of weeks before the walk. I asked them to make the checks payable to the Alzheimer’s Association and send to my Post Office box, and I would deposit them with the app on my phone.

Sometimes, several weeks can pass before I remember to check my Post Office box for mail, but I checked it regularly before the walk. I was expecting two donations through the mail, but the box was empty every time.

Finally, I noticed a metal piece across the back of my box. The fee is due in June, and I always pay as soon as I get the notice. My key still worked, so it didn’t make sense that the box was closed.

At home, I searched my various bank accounts and credit cards to see when I had paid for my box. My husband got tired of my searching, called the Post Office, and handed me the phone. After a short conversation, I received the distressing news that my box had been closed due to non-payment. Of course, the people I needed to talk to wouldn’t be in until later in the day.

“I can’t believe I forgot to pay for my box,” I told my husband. “I’ve had that box for twenty years and never once paid late.”

“We’re getting old and forgetful,” he said. “We have so much more to remember now than ever, so it isn’t any wonder that we might forget to pay something.”

Then, I began lamenting about my insurance that is due in September and other mail that may have been returned. After checking my scanned documents, I was reassured that I had received my insurance statements in August and they were already paid.

I went to the Post Office that afternoon and found the box had to be reissued to me as if it were a new box, although I would have the same box number. “I don’t remember ever getting a notice, and I certainly never got a late notice,” I said.

“There was a problem in June.” He didn’t elaborate and at this stage, it didn’t matter anymore.

I think I had my own problems in June. I added a year to my birthday and obviously purged part of my memory. I’ve gone to an electronic to-do list which is supposed to be my reminder to pay certain bills. The big problem is that I forget to load up the list and look at it daily.

My most reliable memory aid is the calendar on the wall. I write appointments and reminders on it so that I forget-them-not. I check the wall calendar daily as I walk by it on my way to the coffee pot. The one thing I never, ever forget is my coffee.

Writing names on the $1 forget-me-not flowers are a way to remember and to honor our loved ones who are living with, or have died from Alzheimer’s. No one is truly forgotten when his or her name is etched inside our hearts.

Donations to the 2022 Sedalia Walk accepted through December

Click www.alz.org/sedaliawalk

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#ENDALZ

Saturday, September 24, 2022

2022 Sedalia Walk to End Alzheimer’s

Those of us on the Sedalia Walk to End Alzheimer’s Committee spent nine months planning for the Saturday 17, 2022, Walk to End Alzheimer’s. We recruited a record number of corporate sponsors and planned the details of walk day. Anyone who has never served on an event committee has no idea of the time and effort it takes to make the big day seem effortless.

Last year, we worked through some big snafus. A week before the big event, we discovered the shelter we thought we had reserved was rented to someone else. Still, we managed to move to a different location in the park and by the time the walkers arrived, we had tweaked our original plans to fit in the new space.

This year, we had no last minute crises. It was heartwarming to see our efforts bring big smiles on the faces of the walkers. For the first time, we had a balloon arch and colorful tents to match the pinwheel flowers.

I was happy to see my team arrive, and our wonderful photographer snapped a photo of us. When I downloaded the photos that Jessica Buesing from The Scarlett Lens captured, they added to the kaleidoscope of images already racing through my head. Through her lens, I was able to see what I missed.

Part of the beauty of the walk is connecting with others. I had a conversation with some of the Sigma Kappa Delta Eta team. I welcomed them to the Sedalia Walk and complimented them on their fundraising.

I also met three women from Cedarhurst who had the sponsor table next to mine. I told them that I had been with some friends, and we sang Christmas carols for their residents. “Do you only know Christmas carols,” one of them asked.

“I’m part of a family band that plays at nursing homes in Stover and Cole Camp,” I said. “We play mostly country with some old time rock and roll and inspirational songs. I played my ukulele and sang for Sylvia G. Thompson for part of the facility. Then Covid hit and the other side was cancelled.” They wanted to know if I would play at Cedarhurst, and I agreed that I would in October. I look forward to this new adventure. Singing brings me joy, and I love to see smiles on the resident’s faces.

I met a delightful woman, Rose, and her husband/care partner. Rose has early-onset Alzheimer’s, and I was able to visit with her for a while. During our flower ceremony, Rose held the blue flower. It hurts my heart that she and her family have embarked on the Alzheimer’s journey.

After the opening ceremonies, the teams lined up to go through the balloon arch. We fell in behind several other teams and started on the walking trail. After we had walked for a while, I began to lag behind. I reached a patch of shade, and told the others that I was going to rest. Eric stayed with me and Brandon came along in one of the carts and offered us a ride. “As long as you don’t drop us off farther along the trail,” I said. It felt good to sit down and he drove farther to see if anyone else needed a ride. As we sat there, the rest of the team came by and I snapped a few photos of them.

Brandon brought Eric and me back to the beginning of the walk where we were greeted by pom poms and ringing bells. The walk/ride was over for me.

Rob and Brady helped me break down my table and return my various items to my car. The car was so hot that I rolled down the windows and started it. I walked back over and helped with the teardown. Before long, every sign was taken apart, tents were broken down and loaded into the vehicles, and every stray water bottle was thrown in the trash.

With our goodbyes said, I returned to my cool car, breathed a sigh of relief that all went well, and headed for home. I removed the button with Jim’s picture from my shirt and placed it on the console where I could see it.

I stopped at Dairy Queen to get a cold drink and a chicken strip basket to take home. As I pulled out onto the highway, I thought about all the times, I took Jim out of the nursing home to get chicken strip baskets or milkshakes at Dairy Queen.

My thoughts turned to the 1998 walk when Jim and I joined the Hannafords from Slater, Joetta and Penny from the Alzheimer’s Association and Penny’s dog, Victoria, for the Sedalia Alzheimer’s walk. That was a hot day too, but it didn’t keep us from walking from Liberty Park to downtown Sedalia.

Throughout my twenty-five walks I’ve seen numerous changes, including Memory Walk becoming the Walk to End Alzheimer’s. Other changes: the number of participants, the walk organization, the advertising, the pinwheel flowers, the online registration and walk page with instant updates, and the list goes on and on. But some things never change: the passion, the heartbreak and hope, the smiles and tears, and the wish for a world without Alzheimer’s.

Also, never changing is that I walk for persons with dementia and their caregivers. As always, I walk for Jim, and he walks with me as surely as he did in 1998.

Thursday, September 15, 2022

Music for the Soul

The Capps Family Band 2022

Saturday afternoon, the Capps Family Band played music for our dear family friend’s 75^th birthday party. I went early to set up my sound system, which was pieced together from several Amazon purchases. I hooked everything up and the microphones had no volume. After a brief moment of panic, I finally discovered that one of the connections wasn’t inserted completely.

Unlike our nursing home gigs, we didn’t have a formal program, but my sister-in-law had put several of our songs together where they were easy for my brother to find. Normally, he is our fearless leader, but he said I was the one that made arrangements for this program, and I was in charge. “I don’t want to be in charge,” I said. Anyway, the program went off without a hitch with everyone in charge of themselves.

It is amazing how much the decision to play a ukulele has changed my life. After I learned a few chords, I began to practice with the family band. My brother encouraged me to play with the band at the nursing homes. I sat in the back far from the microphones and played my little instrument. Then, at practice, my brother finally talked me into singing a song. “We’ll put that on the program next month,” he said.

Later, that week, we played at the nursing home. “My sister Linda is going to sing a song,” he said. So, I stood up and sang the song just as we rehearsed it. That was when I realized how much joy Jim found while playing his guitar and singing.

Jim learned to play on a mandolin when he was a small boy. His mom said that when he first learned to play, he played “Rubber Dolly” so much that she was sick of hearing it. Jim told me that later, his uncles, especially Uncle Vic, taught him how to play the guitar.

Jim always picked up his guitar first thing in the morning. He said it was his therapy. A devoted Buck Owens fan, Jim often played the instrumental, “Buckaroo.” One of the saddest parts of dementia was watching him slowly lose his musical skills. The song choices that he could master went from hundreds to a handful of songs. Long after he had forgotten lyrics to most of the songs he used to sing, he sometimes played “Buckaroo” perfectly.

After he lost his ability to play his guitar, Jim never stopped listening to the music he loved—country music, bluegrass, cowboy songs, and Elvis. Music was always a part of Jim’s life, and listening to the songs he loved soothed his soul.

I have also learned that nothing works its magic on me the way that music can. When I pick up my ukulele and browse the Capps Family Band songbook, time just flies by. The clock might say it is midnight, but my heart says one more song, and another, and I wonder if I can play or sing that song? I love the challenge of stretching my ukulele playing, or taking on a song that I don’t think I can sing. When I’m successful, it’s a rush, but if I fail, I just set it aside for another time.

The one thing I’ve learned is that mistakes happen, the old voice might crack once in awhile, but the purpose is not to be perfect. Perfection is for studios where a song might require several takes, or tweaking the sound. The secret to live music is that when you make a mistake, you just keep right on going.

I’ve found that life also has a secret, and amazingly, it is the same secret as music. No matter what happens, we need to move forward. We all make mistakes, but to live life to the fullest, we need to keep-on-keeping-on.

The worldly treasures we have accumulated do not determine whether we are successful in life. We are truly wealthy when we have the magic of music in our souls.

To register or donate to the Sedalia Walk click www.alz.org/sedaliawalk