Category: Changes and Dementia

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Are You, You?

Dad enjoyed a day with his caregiver while I went to a conference for the day.  After the caregiver  left, he looked at me in his fatherly way and asked, “Are you, you?” Be still my heart. I said “Yes, It’s me.” He smiled and squeezed my hand.

In previous years, Dad has been able to go with me and sit in for my sessions, but now I only include him for short, close-to-home events.  After a presentation a few weeks ago, as I returned to my chair next to Dad, he quickly stood up and gave me a big kiss on the cheek, then just as quickly sat back down. I received another of these kisses after we selected new eyeglass frames for him.  Lewy Body Dementia has affected  most of Dad’s speech, yet he still finds ways of expressing himself.  

These communications are physically face-to-face within inches. Well inside the sphere of intimate relationships between father and daughter. I’ve learned that when I want to connect with Dad, all I need to do is get physically close. At 65 years of age, I still feel everything a child might experience from a loving father. It is profound that we have this connection mostly without words. Not because of me, but because of my father who took the lead in our relationship the day I was born.

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I’m a Grown Man!

One of the earliest memories I have of Dad caring for me is an image of him removing my snow boots and rubbing my tiny feet in his hands to warm them. It comes to mind whether I am just washing the sand from Dad’s feet after a beach walk or giving him his daily shower.

Since we’ve gone through gradual changes together we have a good routine for personal hygiene following the same step-by-step process for years. It typically goes smoothly and calmly. Every once in a while Dad goes to a different place, time or experience and the process requires a greater level of patience and encouragement. Dad once described it as, “When my brain works backwards.”

I’ve seen Dad’s brain work backwards many times during nighttime sleep disturbances when he is acting out his dreams and delusions which is common for Lewy Body Dementia. Interestingly, although he no longer uses more than a few words at a time when he is in the moment, during altered state episodes, he speaks full sentences and although whispering, converses with whomever he is seeing in his mind. Rather than disturb him, I often let him continue. And most of the time, even if I get him back in bed, he remains in his mind, not knowing I am with him or what we are doing in the present.

Last week, during bath time, Dad’s mind started working backwards. We always begin with toileting. When I asked Dad to sit down, he announced, “I’m a grown man!” You might think I was startled. But no. I was elated to hear his strong voice and see his independent nature. I reminded him that grown men use the toilet and asked him please. This worked. I thought the episode was over until it came time to clean his backside. Typically, he wouldn’t notice or care. This time, Dad said, “Get outta there!” which fortunately, even with a chuckle, I was able to do quickly.

Bathing was uneventful with Dad sitting on a shower chair holding the spray shower head as a distraction while I soaped him up head to toe. I softly sang one of Dad’s favorite tunes, “How in the heck can I wash my neck if it ain’t gonna rain no more…,” and again, I thought the disturbance was over.

I got Dad dried and partially dressed, then moved on to shaving as usual. When I got the shaver out, Dad firmly and loudly asked, “Do you mean you are telling me I have to shave? I’m a grown man!” Not knowing exactly what would work, I said, “We always shave after your shower Dad.” Cognitively, Dad hasn’t been able to shave himself for a few months, but I hand him the shaver. He says, “I use a different one.” This is true, I recently bought a new one, and luckily still had the old one. I got the old shaver out of the drawer and gave it to Dad. He held it, looked at it but didn’t know what to do with it. While he was distracted, I start shaving him with the new shaver.

By now, shower time had taken 20-minutes longer than usual and we still weren’t finished. Fortunately, we didn’t have to be someplace on schedule. Dad grimaced while I brushed his hair, gave me the over-his-eyeglasses look when I helped him with his dentures, and huffed while I finished dressing him.

The last thing we always do is look in the mirror. Usually I say, “There you go handsome.” On this day I said, “I’m glad you are a grown man, and I am glad you are my Dad.”

It isn’t always easy, but for me it is a privilege to care for Dad, after all he has done the same for me. I treasure the sound of his voice, and his strong independent nature he carried with so much success for most of his life. It’s nice to be reminded, “He is a grown man!

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Boys Books

Dad loves Boys Books. He collected series such as Henty, Whitman, Kelland, Langworth, Saalfield, Maitland and more. The shelves of these adventure stories covered an entire wall, floor-to-ceiling in his den library. It’s wonderful to know that he read every book in his collection more than once. He enjoyed The Airplane Boys, Mark Tidd, The Lion, and The Boy Knight, The West Point and Annapolis series, The Boy Allies. Dad also read young adult selections by Zane Grey, Roy Rogers, and Gene Autry, and the Camp Fire and Trail by  Leslie. Eventually, he sold most of his collection as his Lewy Body Dementia made it impossible to read, comprehend and enjoy the stories.

To help Dad continue to enjoy his hobby of reading, I shared audio books with him. It never worked. Then I read to him and sometimes he enjoyed it for a few minutes but would usually fall asleep. Coffee table books with large images still seem to hold his interest. Yet they are a far cry from his afternoons sitting under the apple tree with a good book in front of his childhood home. I know because I am a reader too. There is nothing better than being immersed in a good book.

Recently, we rediscovered Disney movies instead of books. Adventure stories with people and animals are Dad’s favorites. Homeward Bound, Call of the Wild, and White Fang have been engaging for him. He is interested enough to watch an entire movie similar to being captured by a good book. Next I am going to try the Huck Finn movie to see if he likes it. 

Today as the movie started and the Disney Castle scrolled onto the screen, Dad said, “That could be their church.”  We chuckled at the idea and agreed we knew a lot of folks who loved everything Disney. Speaking of Disney, I only remember Dad being with me one time at Disneyland. As we entered the park, he asked, “What kind of a mickey mouse place is this?”

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Sit Here and Go With Him

1920s Victrola

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.”