Author: Daughter

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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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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.

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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.”

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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.

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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.”

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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!

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When Solitaire Takes Two

Card games have been a source of enjoyment and relaxation for our family. Upon reflection, it was an intergenerational pastime. Many of the games like Cribbage, I learned from grandparents. I remember them playing Euchre, Bridge and Canasta. Dad taught me to play Rummy. As children we played simple games like Go Fish, Slapjack, War, Concentration and Old Maid. My teenage friends taught me how to play Hearts and Poker. The older the cards, the better. Yet, the King of all card games remains Solitaire. Although it has evolved into variations like Spider and Five Crowns, the original version rules our home for about an hour each evening.

Early in his retirement, Dad adapted to technology quickly, conducted business online, used email communication with ease, and regularly challenged his brother in the game of FreeCell. He mastered the game and kept records to prove it. Dad’s spreadsheets listed every game he won by number. There were thousands. If he missed a win, he would search the game by number until he won, filling all the pages of a complete bookkeeping ledger. Like many independent activities, FreeCell, and the use of technology have faded with dementia.

Falling back on the reliability of Solitaire, Dad uses a tablet which I set up for him. Once I bring up the Solitaire app, he can play the game in his own way. Dad rarely finishes a game because once he moves most of the cards to the upper stack, he then moves all of them back to the playing field. He hands me the tablet to show me the cards lined up below from King to ace with the upper stacks empty. Until recently, Dad insisted on moving every card individually back to the top for an official win. Now he enjoys the “auto collect” feature and the dancing card patterns. On days where, as Dad says it, “my brain is working backwards,” the cycle of moving cards back and forth occurs many times. When he gets tired or can’t make a play, Dad asks for help, and we play together for a little while. 

When Solitaire takes two, it’s  a Win – Win!

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Just a Lil Bit Country

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!”

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The Snail Whisperer

Dad has been living with us in southern California where almost everything grows year-round. He enjoys helping in the garden and it is a regular outdoor activity we share. One day while Dad was helping with some pruning, he discovered several snails crawling underneath leaves. He began to talk with them and even placed one in the palm of his garden glove to introduce the snail to me. Although snails are considered pests and I pluck them by hand and place them in the green waste, I too have admired them and even photographed them. It was no surprise when Dad took to the creatures. They are fascinating and Dad loves critters of all kinds. He has always had a quiet connection with most animals.

Since then, Dad is keeping a snail in his bedroom – well not really. It is an imaginary snail that is quite real to him. He calls him Buddy. Buddy is a rolled up brown napkin Dad found in his pocket after a lunch date with friends. Next to Buddy sits a tiny seashell – a saltwater snail. Apparently, the combination of the two items visualize for Dad as one of the garden snails. In case you are wondering, I had Dad’s eyes checked recently and clean his glasses daily.

It began with Dad showing me the brown round napkin snail and gently placing it on a shelf in his bedroom. Now, several times each day I hear Dad softly talking to Buddy. Recently, he has been asking me for bits of food to place for Buddy to enjoy. What is a daughter to do? I give him a little something and then go back and remove it later. It appears that Buddy is eating well. I love the tenderness with which Dad cares for his little Buddy and the comfort Buddy brings to Dad.

While we were out for a walk a few days ago, Dad noticed, for the first time in more than a year of walks, a few snails crawling across the sunny sidewalk. He picked them up, relocating the snails from the dry concrete to the shady landscape nearby.  If they were inside their shells, he left them where they were. I was relieved it had not rained the night before. There can be hundreds of snails in the neighborhood in certain weather conditions.

As we came upon the last snail of the morning, I waited for Dad to gently grasp the shell and place it on a bush along the sidewalk. Instead, Dad said, “I will just give this one a little shade”. He bent over and created a shadow with his hand. What some of us might have interpreted as a black cloud was the Snail Whisperer providing protection from the heat of the day. After a minute – one long minute, I reminded Dad it was nearly lunchtime. He calmly moved the snail to a spot just under the leaves of a blooming Honeysuckle hedge and we finished our walk. Whew!

Coincidentally, I had been thinking about getting out my origami kit to see if Dad would enjoy making paper animals. I have decided to wait on that idea for a while. Who needs origami paper when you have a brown napkin?

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Saturday Sandwiches

Dagwood Tower Sandwich On Glass Plate

Dad’s favorite foods are picnic foods and sub sandwiches. The menu includes macaroni and potato salad, corn on the cob, hotdogs, baked beans, chips and cookies. Every Friday night I make him beanie weenies, we have corn once a week and a variety of salads with lunch. About once a month we go out to lunch for subs. Interestingly, he no longer enjoys chili, hot peppers or anything spicy. I can remember walking into the living room when I was about eight years of age to see him sitting on the couch snacking on jalapeno peppers right out of the jar. As I sided up next to him, he said, These peppers are so hot! I asked him, Why don’t you stop eating them? Dad replied, They don’t get hot until I stop eating them. They are so hot I can’t stop.

A jar of jalapeno peppers was always on the table for Saturday lunch. On Saturday Mom would bring out the leftovers from the week and we would eat whatever was on the table. If there wasn’t quite enough Mom would cook up a little bacon. Sometimes Dad picked seasonal fresh pear tomatoes he grew in the side yard. I brought radishes (red and white), carrots and lettuce from my corner garden. I’m not sure exactly how it started, but I can hear my sister saying That’s gross, as Dad sliced hardboiled eggs and radishes and stacked them on top of white Wonder bread covered with barbecue beans. I placed a few slices of bacon on my bread and peanut butter. Dad winked and we just kept going. We started to combine anything we liked to eat onto our sandwiches. Sometimes we toasted the bread or added another slice of bread in the middle. I don’t know where we put all the food, but we ate everything on our plates. The messier the better.

We came up with some traditional combinations like creamy Limberger cheese and onions and added the liver too. Our bologna and mustard layers were usually topped off with potato chips. If there were leftover Bisquick biscuits, we used them instead of bread. There are many recipes that taste just as good cold as hot. Cold split pea soup with ham makes a great spread. Cold SOS is great with lettuce tomatoes and radishes. Who needs mayo when you have gravy? Grapes and onions stick to cream cheese. Macaroni, potato and egg salad are no brainers with sliced hot dogs. There was usually some canned Spam or corned beef and occasionally sardines. If Mom was making pickles, we added the pre-soaked Persian cucumber slices or the Butter Pickles. The more Mom and Sis fussed the more creative we were. Before we took our first bite, we carefully smashed the layers from the top down hoping to get a bite tasting of every flavor at once. We had so much fun.

Dad’s Dagwood inspired Saturday Sandwiches became a tradition. We eat much healthier these days, but when we have BLTs I always make them with peanut butter and Dad makes them with peanut butter and mayo. Dad is almost always willing to eat up leftovers so food doesn’t go to waste. Yesterday during his picnic food lunch he crumbled his chips onto his macaroni salad. I’m grateful he is a good eater. Tomorrow is Saturday. I think we will get out the Borgasmord.