An upbeat and heartwarming journal about how a father and his adult daughter overcome the challenges of dementia. Real life moments reveal vulnerability isn't limiting but liberating when love and respect are mixed with humor, adventure, exercise, good nutrition, hobbies and calm.
A few days ago, Dad discovered the full-length mirror behind the door in one of our bedrooms. It was a joy and curiosity to observe him in the company of the man in the mirror. I don’t know whether he recognized himself or not. When we use the bathroom mirror he usually doesn’t show much recognition. Sometimes he will look at his teeth, but that’s it.
Fortunately, Dad liked his new friend. He looked up and down head-to-toe. He stepped back a bit and then moved close within a few inches face-to-face. He spoke to the other gentleman in his whispered voice. I wondered what he might be saying.
I was reminded of a country song that Dad and I love singing together. It has been recorded by many artists and is called “Looking Back to See.” The rhetorical lyrics are rhythmic with a fun melody.
“I was looking back to see, if you were looking back to see, if I was looking back to see, if you were looking back at me. You were cute as you could be standing looking back at me and it was plain to see I’d enjoy your company.”
After about 20 minutes, Dad walked away from the mirror and out of the room. Although he initially entered the room looking for me, he was completely unaware of my presence, and instead enjoyed a different social engagement.
Today I played the song “Looking Back to See,” and Dad and I smiled as we sang. Each of us smiled because we liked the song, but mostly because we were enjoying our own company together.
Scheduling appointments on calendars is routine for most of us. For Dad, it’s been about three years since he has been certain of the year, month, date, day, or hour. All he knows is existence without time. Sometimes I wonder what it is like to live not knowing the difference between night and day. I imagine this moment – and then this moment, only to realize that the epitome of the concept is a perspective for those of us with a memory of the past and plans for the future. Then I try again with a blank slate.
I wonder what Dad is experiencing when he wakes up each morning. He usually wanders about the home for a while then goes back to bed. Sometimes he sleeps. Sometimes he gets ready to go someplace. Sometimes he looks through a few letters and photographs I keep on his bedside table. Sometimes he whispers, talking with someone I cannot see. Occasionally he doesn’t recognize me for a few moments when I enter his room. He recently asked me, “What is your name again?.” And on rare occasions he asks me “Where am I,” or What are we doing?” At bedtime, we practice specific habits. I let him know we are the only people in the house, and that we are going to try and sleep all the way until breakfast. It seems to help. I keep the calendar consistent and a patterned daily routine that helps create an environment of security for both of us. Then there are the special days – the holidays.
What is a daughter to do when she wants to celebrate a holiday with her Dad with dementia? Afterall, he won’t remember it. This year, once an hour throughout the day, I reminded Dad that it was Christmas Day. I associated it with holiday traditions such as gift giving, a special meal, church, eggnog, and singing Christmas music which he enjoys. Each time, he replied as if he was being told for the first time. “Really, Oh that’s nice, or Okay.” This is after including him in decorating the tree, making cookies, watching holiday programs, and even keeping an advent calendar over the weeks leading up to the celebration. The reward this Christmas was how much he enjoyed the combination of gifts with his favorite music on a Bluetooth headset and a small plush puppy from his stocking. He was incredibly happy, petting the pup, listening to the music, and singing along. I captured the moment with video. For myself, and most importantly to show it to him so he can experience the moment again. We listen to music and enjoy the imaginary pet every day.
Valentine’s Day is tomorrow. As long as I can remember from the time I was a small girl, Dad always delivered cards, and candy in heart shaped boxes to his girls – my mother, sister, and I. Now I do the same for Dad, even if it’s just for a moment, or several moments of rediscovering the day. Greeting cards have mostly lost meaning for Dad, but he still has a token from a Valentine’s Day card I gave him years ago. Glued inside the card was a silver heart with the words I Love You Dad engraved on it. Dad usually keeps it on his nightstand. Except every week I find it in the laundry, having fallen out of his pants pocket during the drying cycle. First I hear it clanking around, then I have to dig around the clothes to find it. In a funny way, Dad is still giving me valentines.
We tell each other we love each other every day – morning, noon, and night. Somehow beyond the realm of lost memories and even occasional loss of recognition, our love doesn’t fade. Like the lights on the Christmas tree or the silver heart in Dad’s pocket, every moment on our calendar, we get another opportunity to share our love, and it just keeps shining brighter. This daughter is grateful for love every day.
Yesterday Dad was listening to songs by Marty Robbins on a tablet I keep in his room. He shared with me how much he was enjoying the music by saying, “I can sit here and go with him.” Marty and his ballads have been favorites in Dad’s music collection since I was a child. Dad was telling me that the songs were familiar, that he was listening to the lyrics, and that he was imagining himself in the musical stories. It was great to hear this. Dad’s appreciation of music, recognition of artists, and ability to play records by himself has changed dramatically in the past nine months. This isn’t the first time Lewy Body Dementia has affected our music experience. Read the post “Just a Lil Bit Country.”
Dad no longer requests artists by name even if I give him a choice of just two. He rather quickly lost his ability to operate his favorite modern turntable. He began to think he had placed a record to play when there was nothing on the machine. When he did get something playing, he worried that playing the records would lead to him losing them or breaking them and he would turn it off again. A reasonable understanding might be that this was his way of expressing his own awareness about his loss of these abilities. We never know for certain. I decided to make a change when I walked in Dad’s room, and he was trying to put a cardboard album cover on his foot like a shoe and stand up in it. I gradually removed a few albums at a time. Dad didn’t notice they were missing. Of course, the records and album covers were all mismatched. Eventually, I removed the turntable completely. I replaced it with a tablet where I can load a variety of music apps. I particularly like the voice activated ones. Dad likes the ones with lyrics that scroll while the song is playing. At first he read and sang along. Now he just looks at the words and smiles. He can’t keep up any longer but likes that they are there.
The artist that remained the longest was Alan Jackson. Dad recognized his Precious Memories Collection by the image of the church on the album art. Each time I selected this music, Dad would tell me how he was there at the church with Alan when he recorded the songs. This delusion has also since faded. His music experiences are now only in the moment.
On the fourth of July, we played John Philip Sousa’s Stars and Stripes Forever on Dad’s 1920s Victrola Phonograph. Dad waved his arm as if conducting the orchestra through the entire recording. Last week we played Gene Autry. While singing along with “Home on the Range,” Dad swayed left and right, closed his eyes, and sang the chorus. Whether Dad is riding out on the range with Gene, at church with Alan, or on the streets of Laredo with Marty, he is happy in these moments. Music is no longer an independent past time for Dad. It’s okay. We have been listening to these songs together for as long as we both can remember. Wherever he goes in his mind, “I can sit here and go with him.”
Close up of a vinyl record being played on a modern turntable
Do you remember where you were the day that Elvis Presley died? I do. I was at work in a Super X Drug Store stocking shelves when it came over the radio. Dad remembers the day Hank Williams, Sr., died. As he tells me, he came home to discover his mother, my grandmother Helen, crying while ironing the laundry. Dad and I recently discussed the most iconic song by Patsy Cline. Although I like “Baby, Baby,” he and some of our friends and family think “Crazy” was her most memorable recording.
Music is an important part of our day. We listen to create an atmosphere of calm, cue an activity in a certain room, relax during dinner, and pass the time on long road trips. I remember listening and singing to country music as a child. First on the radio, then on an 8-track which was monumental. The 8-track was portable and meant we could listen to music while we were outside doing chores, working on Dad’s 1947 Ford truck, and with an adapter to the cigarette lighter in the car, even when we were camping. I carry an iPod shuffle in my purse with about four hours of music for unexpected occasions, long appointment waits, or in case Dad becomes restless on an airplane flight. It is small enough to fit in his pocket, clips on to his shirt and he listens with earphones.
Nowadays we listen to Pandora on Portals and cell phones,
and vinyl on a turntable that is set up next to Dad’s chair. With his dementia, we sometimes
listen to the same album several times before he realizes he has already heard
the other side.
Recently, Dad began sharing his in-person experiences with country music artists. One involves Johnny Cash discovered hiding out on the family property of sixty acres of woods to evade the draft. Another was Jim Reeves walking down the street in the small town where Dad grew up. When he recognized and spoke to Jim, Dad learned he was living there in hiding to keep his wife from knowing he was alive. Dad also shares how he met Dolly Parton and was invited to one her rehearsals. He was the only one there and was privileged to see the entire show. Dad was out for a walk along the lakeshore one evening and found Patsy Cline in a dilemma. She needed to get to a large boat out on the water and had no one to assist her. Dad found a small rowboat. He delivered her safely just in time for her performance on the dinner yacht. Patsy was so grateful.
Dad particularly enjoys country gospel music performed by
Alan Jackson and Jim Reeves. He listens to Eddy Arnold, Charley Pride, Sons of
the Pioneers, Hank Williams, Sr., Tammy Wynette, George Jones, George Strait,
Tom T. Hall, and other artists. We sing along as we have since I was a child.
If Dad ever tells you a story about Charley Pride, its true.
I purchased tickets to a concert for his birthday a few years ago. Although I
could not take him, I arranged for a caregiver to attend. They had front row
balcony seats and as Dad will tell you, “We could see everything, and it was a
great show!”
