Alzheimer’s – Page 7 – Barefoot Lily Lady

In Search of Billy

Once upon a time, not so very long ago, I arrived at BeeHive to sit with mom during lunch. Momma was able to stay focused on eating if someone was nearby to remind and coach her. As her Alzheimer’s progressed, she had begun missing meals – sometimes only eating one meal a day – so I tried to be there during that time whenever possible. On this particular day, I was running a bit late and most of the residents were eating their dessert.

Not Momma. She had already toodled away from the table in her wheelchair and was calling out, “Billy! Billy! Where are you, Billy?” Now, I didn’t know anyone there by the name of Billy (not even one of her dolls had that name), and had never heard her call out for someone in this unconsolable way. Mom seemed almost frantic to find Billy.

I put my things down near her place at the table, then approached her and asked if I could help. “No! I want Billy!” insisted Momma. “Well, let me help you find him,” I replied. “Can you tell me what he is like?”

Momma seemed glad to have someone help her find Billy. The staff was nearby beginning the cleanup process after lunch, so I asked if any of them knew who Billy was. No one did.

Then, with tears in her eyes, Momma brought me back to the situation at hand and plead, “Please, help me find Billy. He’s my friend and he’s so kind. He helps me.”

That description was all I needed to give me a strong hunch as to the mystery of Billy’s identity. Going with my hunch, I asked one of the gals if Momma had been hanging out with Andy that morning. Why, yes! Andy had paid quite a lot of attention to Momma earlier that morning, strolling with her around the building and helping her with daily cares.

Photo credit: Kathleen Zelinski, BeeHive of Oregon’s Activity Director

Andy is one of the owners of BeeHive of Oregon. Like the other co-owners, Josh and Gina, Andy has more than just money in the business. He puts his caregiving heart in there too.

Andy showed his interest by taking the time to notice the photos I had placed in mom’s room. As he looked them over, he would ask questions about them so he could learn more about my mother’s past – important because Momma was living in the distant past in her mind. Knowing more about a someone’s past is helpful in caring for those with any number of conditions which cause short-term memory loss.

Andy often told me how much he adored my mom. He wanted to know about her and took a genuine interest in hearing stories from her past so he could better understand what made her tick. Though Momma probably didn’t say so, she trusted him and I think she sensed how much Andy loved her.

And Momma loved her ‘Billy’ too.

Falling for Dolly

Momma rested comfortably after Vivian and Jess left, so I decided to go home for a bit that evening to have dinner with Wayne and repack my bag. I knew in my heart that I would be staying with mom until the Lord called her home, so stuffed my backpack with a week’s worth of clean clothing, my Bible, a book, and a few movies to watch. I was just getting in the car to make the 12-minute drive back to BeeHive when I got a call from Kate, one of her sweet caregivers, who was calling to let me know that, weak as mom was, she had somehow managed to get herself out of bed and had fallen once again.

When I arrived a few minutes later, mom was back in bed and resting comfortably. The bump on her forehead from a previous fall had been in the healing stages, but now looked fresh again. Momma was chatty, but more difficult to understand. I did manage to cipher at one point that she was talking about her baby. Dolly was seated across the room in a chair, rather than in her customary spot in bed with her. It was then that I surmised Mom had been attempting to get out of bed earlier so that she could bring her baby to bed with her, but had fallen as a result. I placed Dolly in Momma’s arms and she patted her and spoke soothing words to her for quite some time.

I shared my theory concerning why mom had tried so hard to get out of bed with the staff. We all agreed that Dolly was very real in momma’s mind and that we should make sure Dolly was always in bed where Momma could see her.

I always loved watching my sweet mom tenderly caring for her beloved Dolly (and other dolls and stuffed animals), so I took a little video of Momma interacting with her Dolly that evening. When I would watch her care for Dolly, it seemed as though I had a glimpse of what my mother was like when I was a baby.

I will always treasure this sweet and special memory of Momma and Dolly.

The Decline: Praying for Moments of Clarity

“Touch can reach through the fog, confusion, and fear of dementia. Reassuring touch grounds those who are spatially disoriented, bring people back to their bodies, and increases their awareness in present time and space. One touch can affirm that they are not alone and they are valued by the person who is beside them.”
Teresa Stecker, R.N., Hospice Nurse, excerpt from Creating Moments of Joy Along the Alzheimer’s Journey, by JoLene Brackey

Following mom’s recent and very life-altering stroke, I wanted to make sure my sister Viv would be able to share some special time with our mom. Between the restrictions related to COVID-19, my sister’s work schedule, and her car that needed tires and brakes, Viv hadn’t been able to see mom, and I felt time was running out. I phoned Viv and told her that I thought mom would be going Home to heaven soon and encouraged her to visit if she could.

In an effort to prevent the spread of COVID-19, visiting a loved one in a care facility was limited to window visits. But there was an allowance for residents who were in end of life or needed “comfort care.” Mom had been under hospice care for quite some time, but had now officially transitioned to end of life care, so family was permitted to gather as long as certain precautions were taken.

Viv didn’t have reliable transportation, but said she could come on Wednesday when her daughter would be able to bring her. In my heart, I was worried that mom wouldn’t make it until Wednesday, but didn’t want to burden Viv with trying to pressure someone else to bring her or tempt her to drive a car that was not roadworthy. By Tuesday, Mom was sleeping a lot and had completely stopped eating and drinking, so I prayed that Viv would be able to make it in time and that she would find a measure of peace for having been here.

I noticed that mom was a tiny bit more alert in the minutes immediately following being changed and turned, so requested that her caregivers do her daily cares shortly before Viv was scheduled to arrive at 1 pm. They say that when a person is in the end stage of life there is often a rally, or a short time of clarity. I hoped and prayed Viv would get one of those moments.

Mom was weak and groggy when Viv and her daughter Jessie arrived, but she had her eyes open and was more talkative than she had been since her stroke on Sunday. Viv lotioned mom’s hands while she visited, which was something that seemed to be very soothing for mom. Mom started talking and tried to tell her, among other things, that her arms and mouth didn’t work anymore.

It was the moment of clarity I had been praying for. My heart rejoiced seeing God’s answer to prayer as they had that little moment together.

May 20, 2020 – A weak, but sweet smile from Momma, pictured here with her youngest daughter Vivian and youngest granddaughter Jessica.

Rewind: Ice Cream & Car Keys

Another look back at defining moments in my Alzheimer’s journey with Momma. This is a subject that comes up often in caregiver circles: I know my loved one needs to stop driving, but how do I take the car away? This is how our story of that defining moment unfolded . . .

Facebook Journal Entry – September 15, 2015

Momma loves ice-cream. She often tells me she has not met a flavor she does not like. But, it is quite obvious she absolutely loves butter pecan.

My mom oftentimes reminisces about a favorite childhood memory while enjoying her favorite treat. In this memory, her family would take her grandmother grocery shopping every Thursday evening in Clarksburg, West Virginia. On the way home, the Peet children just knew their daddy (equally passionate about the creamy confection) would stop and treat them all to ice-cream.

Momma’s paternal grandparents, Wilbur and Bessie Peet

This story is deeply etched into mom’s memory – a lovely memory that rises to the surface whenever she scoops her favorite treat. I love to hear my sweet momma share the stories from her youth, from her days in nursing school, from my childhood, and from her many years dedicated to her profession of nursing.

The memories that are stored in this special place deep within her mind come easily. Sadly, not all things in life are so easily remembered for mom these days. We all sometimes forget where we put our phone or our car keys, or struggle to remember a name. This is different. Mom’s memory loss is no longer confined to temporary lapses like occasionally forgetting the name of a friend at church, or where she put her purse, or what she ate at her last meal. The disease that is robbing her of memory has now captured her short-term knowledge of whether she has eaten at all. She will sometimes serve herself bowl after bowl of butter pecan ice-cream, single-handedly polishing off an entire carton in a few hours, then ask if we can go shopping because she hasn’t had ice-cream in ages.

Many other changes are evident to her family and friends, and it is very concerning.

Today is the day we have to tell Momma that she can’t drive anymore. Our family has discussed this and we all believe it is time. My heart has ached all day in anticipation of our talk with Mom. How grateful we are for our friends and family who are praying for us as we have this hard discussion with Mom.

We enjoyed dinner together while listening to Momma tell her stories and ask the same questions over and over again. Wayne and I give one another knowing glances, acknowledging that the time is now. After clearing the table, we sit with mom in the living room. I fidget quite a bit then begin by saying, “Momma, you know that Wayne and I love you very much, don’t you?” Oh, yes, she acknowledges. She knows that full well.

“Momma, you know we would never do anything to hurt you, don’t you? You know that all we’re doing for you is with your best interest in mind, don’t you?” Well, yes, she knows that too. Then Momma starts to fidget and get a little worried look in her eyes.

We share with her that we have decided that it is time for her to stop driving. As we gently shared with her the reasons why, I could see the tears brimming in her eyes, ready to spill at any moment. I think Wayne’s eyes were tear-filled too, but I couldn’t rightly tell, for my own eyes were stinging as I fought back the urge to cry.

The discussion was at times difficult, then sweet, then funny, but always with a heart-rending undercurrent that life was taking a turn that none of us wanted to take. In the end, Momma agreed, suggesting that we take the car with us so we could come and visit and help her more often.

Tomorrow Momma will wake up to a new day and she may not remember this conversation. She will probably call me in a panic when she gets up in the morning and discovers that her car keys are missing and that her car is not occupying its usual spot in the garage.

But, right now, in this moment, we will enjoy butter pecan ice-cream together.

If we were having coffee…

Today I am imagining that we are enjoying a cup of coffee (or your favorite beverage) together. In my imaginary coffee klatch, you are asking me a few really good questions. Let me share with you how I would probably answer those questions.

“What things did you like best about having your momma in assisted living memory care?”

I was blessed to be able to sleep at night (all night).
Momma had more than one pair of eyes keeping an eye on her when she struggled with sundowning and couldn’t seem to stay in bed all night.
Momma was safer. Yes, she would fall, but she would fall at home too. At BeeHive she had more than one person available to help her get up again and a whole team of people assessing whether or not she was hurt.
I slept in a peaceful and quiet house. There was no longer the need to listen to a video monitor’s static hissing at my bedside as I drifted off into never-long-enough sleep.
There were no more bleary-eyed trips to her room in the middle of the night to help with toileting, clean up accidents, change clothing or bedding, or try to reassure her that she was safe from the imaginary people she would see lurking in the shadows at night.

Just a few of mom’s incredible caregivers

“What did you miss the most about being a caregiver once your mom was at BeeHive?”

I would tell you that even though I no longer had the responsibility of caring for her 24/7, I was still her caregiver. While some caregiving loved ones seemed able to separate themselves for a few days at a time, I found myself visiting my mom daily, providing care in the following ways:
- Sitting with her at lunch to better ensure she would eat something without wandering away from the table.
- Being visibly present for a few hours of her day.
- Being her advocate. I communicated on her behalf with the staff at BeeHive, the nurses and doctors, and the hospice workers.
- I simply cared for her by making sure she had everything she needed to be comfortable.

Momma had some very sweet friendships at BeeHive.

“If you had to do it over again, what would you do differently in caring for your mom?”

I’d probably tell you, “Not much.” Each step of the journey with my mom was prayerfully taken. Decisions I needed to make were made with the help of God and those who love me best.

“What do you want your children to do if they someday have to deal with you having a diagnosis of Alzheimer’s too?”

I would tell my children …

Re-read my blog. I wrote it for you. You might find some helpful insights there.
Don’t be afraid to ask for help. Be specific about what you need.
I want you to feel comfortable making the decision to entrust my care to a place like BeeHive sooner, rather than later. Even if I protest at that time, it will be okay. It will be good for us.
Even if you’re not there every day, please don’t forget to visit me.
But most of all – even if I’m unable to remember who you are, I love you very much and always will.

Six on Saturday: Spring Exits and Summer Begins

Hello to my Six on Saturday friends and all of those who follow my Barefoot Lily Lady blog. I’ve been busy dealing with the details related to my sweet mom’s departure for heaven on May 24th, so haven’t kept up with my blog as much. Life is finding a comforting rhythm once again as I adjust time formerly spent with my mom to time spent creating a new routine – including more time in the garden.

With our warmer weather, I find myself barefoot gardening more often. My feet are once again irretrievably dirty as my somewhat neglected flowerbeds are slowly weeded and tended.

As my dear mom went through her final weeks of her battle with Alzheimer’s my garden went through its lovely iris and peony stage. I didn’t take time to show you those photos, so created this little collage photo (cheating, perhaps?) to give you a taste while keeping my photo max within my six.

Now, for this week’s Six…

When I sold my mom’s home several years ago, I took divisions of a few of her pretty perennials and transplanted them in my garden. This iris is from her garden and this is the first year it bloomed. Serendipity? Or a blessing to remember her by? (And it’s in her favorite color…purple)

2) The lovely Clematis ‘Princess Diana’ is scrambling up my arbor entrance to the backyard gardens. Its tulip-shaped bells are a lovely fuchsia pink (one of my favorite garden colors).

3. During this time of COVID-19 “Safer at Home” reclusiveness, I have made it a goal to actually try my hand at making some of my crafty Pinterest pins. My husband Wayne helped me earlier this month by building a birdhouse for me to paint, adding an “as seen on Pinterest” roof made with one of our old license plates. While our son Matt was here for a visit, he helped by cutting down a volunteer cottonwood tree (without anyone getting hurt) and leaving a stump tall enough to serve as a post for this new birdhouse. I’m pretty sure that there are new residents, but haven’t caught them coming or going yet.

4. I kinda love it when I plant something and forget what color it will be. It’s like watching a surprise gift slowly open before your eyes. I sort of remember planting an Asiatic lily in one of my daylily beds last fall. Anyone want to venture a guess as to what color it will be?

5. I’m a big fan of cranesbill. It grows in soft little mounds, but I love how it gently winds its way in and around the shade provided by other flowers in the garden, adding darling blue, purple, or pink five-petaled flowers here and there all summer long.

Cranesbill (hardy geranium), clockwise from left: ‘Rozanne’ is a lovely blue; ‘Bloody Cranesbill’ is a deep pink, and ‘Vision Light Pink’

6. This is another clematis (cultivar unknown) which I dug up from my mom’s garden before putting her house up for sale. It is inching its way up the other side of the garden entry and will hopefully meet up with ‘Princess Diana’ this summer for a sweet pink and purple combination.

Can anyone help me with the cultivar name of this lovely clematis?

Oops! I guess that’s 7!

Are you wondering what this “Six on Saturday” thing is all about? Simple. Gardeners all around the world post photos (words optional) of six things in the garden on a Saturday. Let me tip my hat to The Propagator, the creator of Six on Saturday, who provides the forum for gardeners to virtually traipse through one another’s gardens every week. It’s a lovely way to show off our gardens (both the pretty and the yummy), share knowledge, and even glean some advice for how to deal with our garden failures. I hope you’ll join us next Saturday.

The Decline: Forgetting The Love of Your Life

My parents, Jerry and Charlotte Boyles, were married on a sultry hot day, the third of July in 1955. From time to time, mom told a few wedding day mishap stories about that memorable day, one of which was that her little sister (and flower girl) came home from summer camp that morning and had head lice. I can’t imagine what it was like taking care of that problem along with the usual hurry and scurry of a wedding day.

The other story that I rather like was best told by my granddad – the short of it was that he couldn’t find his brand new pair of dress socks, so subbed in a pair of his well-worn Sunday socks. He said that his feet hurt something fierce that day. As he told the story, it was because the “lost” socks were actually not lost. Rather, they were stuffed for safe-keeping in the toes of his dress shoes; a fact that was not to be discovered until after the wedding.

Except for candid photos and snapshots taken by family and friends, many of which are fuzzy, there weren’t many photos from their wedding day. My daughter took the photos we could find and created a beautiful memory book for their 50th anniversary – they loved to page through it. Though there were no professional photos taken on her wedding day, Momma had some beautiful formal portraits taken of her in her wedding dress prior to the wedding. She was a strikingly pretty bride in her waltz-length lace gown with a matching jacket. For her flowers, she carried a small white, lace-covered Bible with a sweet corsage on the cover and little ribbons tied with flowers streaming from it.

Twenty-one years later, I carried the same little Bible with my own choice of flowers on my wedding day.

Momma honored her wedding vows in every way as she loved, honored and cherished my dad. Her commitment to him shone most brightly in her keeping of the “in sickness and in health” part. She walked alongside dad through battles with five different types of cancer in his lifetime until the day God took him Home in 2008.

Forgetting is one of the harsh realities of Alzheimer’s.

It’s hard to pinpoint when mom forgot dad. There were signs along the way as her memory of dad dimmed. I grew a little suspicious when I’d find notebooks and scrap bits of paper where she had written his name over and over again; perhaps willing herself not to forget. Some days, the memories could be resurrected or refreshed as we would look through photos together. Other times, they were harder to conjure up.

One night when mom was still living with me, I thought I heard her crying so peeked in on her to make sure she was okay. I could see that she had a photo of herself and dad in her hands. Her back was to me, but I could also see that she was dabbing at her eyes with big wads of Kleenex. It broke my heart to see her look at that photo and say through her tears, “Oh, Jerry Robert. Where are you? I think you died, but I just can’t remember.”

Turning the Last Page

From the moment I arrived at BeeHive, it was apparent to me that we would be experiencing the final chapter of Mom’s remarkable sojourn on earth. The stroke had dealt a crushing blow, adding further injury to Alzheimer’s furtive chipping away of her mind and body.

I will forever be grateful to the staff of BeeHive for graciously allowing me to stay at my mother’s side during her final days. It was a hard week, filled with opportunities to be a comfort to my mother, and moments both endearing and bittersweet. My overnight vigil afforded a rare opportunity to observe the night shift at work, deepening my appreciation for those dear ones who watched over the residents at night.

On May 24, 2020, a beautiful Sunday morning, as I held her hand in mine, the final page of Momma’s life was quietly turned. My sweet mother’s story on this side of Glory ended just as I hoped and prayed: Alzheimer’s lost and God won as He called her gently Home to begin the story that never ends.

Reading the Last Chapter

If you’ve read my blog for any length of time, you may have noticed that I have been candidly sharing what is happening in my mom’s world living with the diagnosis of Alzheimer’s. The story has been a few years in the telling; parts of her story are not easy to tell, other parts are sprinkled with joy and little bits of humor. The part of her story that we are in right now is very hard to write about, but telling her story has been important to me because I know there are others traveling on this path and perhaps our experience can shed a little light on the path of those traveling behind us, and comfort and companionship for others.

In addition to blogging about mom’s story, I have been finding great comfort in listening to audiobooks while on this somewhat solitary part of mom’s journey Home. Books are great companions. As a wanna-be writer, I enjoy seeing how various authors tell their stories, develop characters, and weave their story lines. One of my friends likes to jump ahead to the last chapter of books and read how the story ends before she decides whether the book is worth reading. If she likes how the story ends, she’ll read the book. She explains, “Knowing how the story ends doesn’t ruin the story for me.” For my friend, there is enjoyment in knowing where the plot is headed. She loves noticing how each character is introduced and how the little twists and turns in the story line fit into how the story will ultimately end.

A phone call I received on Sunday night makes me feel like I’m about to skip ahead in mom’s story. My phone rang at 7:09 pm and lasted only one minute. The call was Kate from BeeHive calling to tell me that they believed my mom had suffered a significant stroke. Kate’s voice was filled with compassion. She didn’t have to say it, but we both knew that this new twist meant that we were most likely in mom’s final chapter of life.

I told Kate I would be there in a few minutes and then hurriedly tossed a few changes of clothing in my backpack, grabbed my Bible and my favorite pillow, then headed toward BeeHive.

I am so thankful I already know the end of the story. Alzheimer’s loses. God wins.

Bedtime Prayers

Even on nights when I am weary and tired, I sometimes have trouble falling asleep. Other times, I fall asleep, but cannot stay asleep. My trouble with insomnia probably stems from being on the plus side of 60; but, I think the main problem is that my mind just keeps whirling with thoughts long after my head hits my pillow. In my search for a remedy, I read about a sleep tactic whereby you count backwards from 50, mindfully counting each breath. Breaths are slow and measured – one deep breath in, hold a few seconds, then a slow breath out. I thought it couldn’t hurt, so I tried it. Lo and behold, it seemed to work, as I don’t recall ever getting past the 20’s on my way to zero.

One recent evening, as I completed my requisite bedtime routine of pillow-punching and fluffing, I decided there might be a more meaningful way to spend my countdown to sleep. Rather than pay close attention to the ins and outs of my breathing, I decided to pray about things that were on my heart as I counted forward, rather than backward.

That night, I prayed for the things God brought to mind: a missionary our church supports, my Christian brothers and sisters in Christ who live and serve in India, my children and grandchildren, my brother as he recovers from surgery, my husband’s various ministry endeavors, my pastor, the friends who are looking for work, and several friends with health needs. As I poured the concerns of my heart out to God, I remember taking my sweet mom’s name before the throne as well, asking God to take her gently Home to heaven in His time. Even though I knew I would greatly miss her, I longed for God to rescue her from a body and mind trapped in the clutches of Alzheimer’s.

One by one, my requests were heard by my heavenly Father, resulting in a heart that was quieted by this little bedtime prayer and praise time. Tucked in my bed and nestled under a blanket of God’s peace, eyes closed in prayer were soon closed in sleep. Something tells me my Heavenly Father didn’t mind one bit when His sleepy child fell asleep mid-prayer.