Author: Daughter

Posted on

Morning Banana

This morning my caregiver mentioned that Dad was confused more than usual. On this particular day, he got out of bed, picked up his slippers, and attempted to leave our home. Then she said, “It only took two bites of a banana, and he was back to his more usual self.”  Dad likes bananas now more than ever. In fact, anything sweet or salty are typical for this stage of dementia.

I keep bananas in the house and give Dad one every morning to start breakfast. For as long as I can remember, Dad has eaten a banana first thing every morning. Afterwards he would do a few chores and a few hours later sit down for breakfast.

Bananas are an excellent food choice for loved ones with dementia. The fruit is portable, palatable, and loaded with potassium which helps regulate fluids and is important for muscle function. It also provides magnesium, vitamins B6 and C, manganese, and fiber. Depending on the ripeness of the banana, it can also help with gut health.

Dad has dysphagia and the banana is easy to chew and swallow. Years ago, I gave him a whole banana to peel and enjoy. When he started to wrap the peel up inside out and get banana all over his hands, I decided to peel it, cut it up, and put it on a plate for him to eat with his adaptive fork.

Sugar can cause increased delusions for Dad, so bananas and other fruit provide a natural sweet option with less  complications. Sometimes I make banana walnut muffins for him with the overly ripe bananas. Bananas are perfect for smoothies too.

While Dad enjoys the flavor of bananas, more importantly, there is a routine and visual familiarity surrounding the fruit that helps him find reality in spite of the effects of his Lewy Body Dementia. I’m grateful for the insights of our caregiver, and for the health, enjoyment, and comfort bananas bring to Dad.

Posted on

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.

Posted on

Looking Back to See

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.

Posted on

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!

Posted on

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?”

Posted on

Love Every Day

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.

Posted on

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.”

Posted on

My People

Holding a picture of an ancestor near a family tree.

Dad has always had an interest in the family tree. Fortunately, a not so distant relative in Holland did extensive research and shared it with the entire family. We love knowing that just two generations ago, our paternal family immigrated to the northeastern United States. Stories of their business endeavors are consistent with the entrepreneurial spirit of the family. A great-great grandfather was a merchant who sailed his ship through the English channel trading and selling goods. With records going back to the 1600s, there is even a roster from the Queen’s court that includes our unusual family name. There has always been an idea that the family is primarily from the Netherlands.

We recently tested Dad’s DNA. And yes, 28 percent of his ancestors are from Germanic Europe and 31 percent are from England and Northwestern Europe. This includes Belgium and the Netherlands as well as the opposite side of the English Channel all the way to Wales, The Isle of Man, and south to Guernsey and Jersey Islands.

We knew less about Dad’s maternal family. Interestingly, we learned a greater 36 percent of our ancestors are from Ireland, specifically the regions of Kerry and Cork. And, if we look back far enough, variations of the family name date to medieval times and the Knights of the Templar. These ancestors immigrated to Canada before arriving in the northeastern United States.

My grandfather met my grandmother on a rainy day. She was walking or waiting for a bus, and he offered her a ride. Meanwhile, one of grandfather’s friends (or a cousin) had been hounding him about introducing him to a certain lady. When it finally happened a short time later, it turns out it was the same gal he had given a ride, my grandmother.

Although Dad’s parents passed away in the 1980s, he doesn’t remember that they are gone. Nearly every day for more than a year now, he asks me, “Where are my people?” He then shares some concern about their wellbeing or relays a story about a time when they were together. He sometimes asks if he can visit the family home. Today he told me in his own way, “My mother and my father always made everything nice for me there and worked half the night to do it.” I know this because I am blessed to be part of the same family. Over the years I witnessed how my grandparents and my Dad lived, and role modeled a loving close-knit family with an exemplary work ethic to provide and care for loved ones.

For quite a while now, Dad doesn’t remember most of his people. His younger brother, my younger sister and my mother have also passed on, just to name a few. When Dad asks about his people, I show him pictures of children, grandchildren, nieces, and nephews. We practice their names and count how many family members are in the generations of the future. I remind Dad, that each and every one of our people are a little bit of his mother and father, and a lot of him.

Posted on

Lollipop Lollipop

Dad loves candy. At Christmas time each year, instead of visions of sugar plums, I can still see Dad passing around his coveted box of chocolate covered cherries hoping each person takes only one. In the fall he found the candy corn. In February, he brought home Valentine boxes for every one of his gals and then helped us eat the chocolates. There were three of us. Anything in the candy dish disappeared quickly, even the hard butterscotch. Tootsie Rolls were always around. He loved fudge too, and would eat rope licorice along with all the kids in the family. My favorite vision is Dad in his blue jeans, a crisp white t-shirt with his sleeves rolled up, holding an iconic brightly colored box of Dots with the flaps open. He is chewing away while rolling the next old-school gummy around in his other hand. Dad would enjoy any and all of these sweet treats all the time if I kept them around. With his dementia, he would probably enjoy them all in one sitting. Sugar seems to spin up the delusions associated with Lewy Body Dementia, so candy is more occasional now.

Dad’s favorite candy lately is peanut butter cups. We are renovating his home and almost daily visit the local home improvement store where candy is displayed next to the checkout stands. Dad reaches for those peanut butter cups every time. He can’t get enough of them. Not every day, but when we do buy them, Dad nibbles the candy to make it last as long as possible. Which is fine except when the weather is warm. Its a bit more challenging when the chocolate is melting around his fingers. Candy seems to be a family trait inherited by my son and grandchildren. With the children, it starts with the peanut butter cups, then gummy bears, sour worms, and more. They definitely have candy in common with their Gramps.

A few days ago, while I was in a salon appointment, Dad waited patiently in a chair nearby. I gave him a bottle of water, and one of the salon employees gave him a lollipop from the candy dish. After my service was completed, I noticed to my surprise, Dad drank nearly the entire bottle of water. Interestingly, the small amount of water that remained in the bottle was pink. As he removed the lid and took a sip, I saw a white paper stick bobbing inside the water bottle. My first concern was that he might choke. Without over-reacting, I asked Dad if he put his lollipop in his water bottle. With a sheepish smile, he said, “Yes, and it tastes gooood.”

Posted on

Our Soap Opera

Handmade soap with cinnamon and vanilla on a wooden background

When I was a young women I belonged to a small theater group that performed a Soap Opera. It was a spoof of a classic melodrama with characters such as hero Sudsley Do – Right,  his girlfriend Prell, sisters Bubbles and Ivory, and the evil Snidley Splishsplash. The rescue took place in a soap factory where the drama was all about soap.

Bathing for Dad has become more dramatic over the past year; especially when he is tired. To help make it easier, we shower earlier in the day, and assist more with drying, wrap him in a comfort robe, and he now sits down to get dressed. Recently we had a positive change that is also all about soap.

For many years while Dad was still living independently, he bathed entirely with soap, including washing his hair with a bar of soap. With the progression of his dementia, I have been wondering whether he is washing his hair – I think not. Every night after his shower, I have been putting lotion on his forehead and skin to prevent dryness. Nothing works for very long.

A few weeks ago, my cousin sent us several bars of her hand-crafted goat milk soap. The soap is amazing! It lathers nicely, is creamy, doesn’t leave a residue, and rinses clean and clear. Dad enjoys the “special soap” and is washing his hair every shower. I know because although he washes it, he just doesn’t rinse it. With many bath and hair products a second rinse would be required. With this natural goat milk soap, I can use a towel to massage it into Dad’s hair and scalp. It is our new moisturizer for his skin which is looking great, and his hair is pleasantly soft. Dad is now Sudsley Do-Right, I have been rescued, and my cousin is definitely the heroine of our soap opera!