It brings me joy when I find a little prayerful note written in my mother’s handwriting. Seeing what was on her heart and mind at certain times of her life gives me insight into the depth of her trust in the Lord.
I recently picked up a little spiral notebook in my stash of things which once belonged to my mom. Giving the pages a quick flipping through, I noticed most of the pages were blank, so I decided to make use of it as my own journal. I thought the journal was blank, but then her handwriting caught my attention on the very last couple of pages.
Let me share with you one of those entries.
Today is March 12, 2016. Life goes on and God has provided. I am so thankful for all who have cared for me.
Jim Meiller – Snow removal; also mow grass.
My caregivers – Cindie and Vivian
Wayne – takes care of my bills. PTL!
And so many more to list.
Lord, I know that I do not have much longer. I ask for grace for these times. It has not been easy, but you have provided for all my needs and so much more. Please give me grace for my remaining time before you call me home.
I do hope Jerry remembers me!
Take care of my family and my friends!!!
So many more but, oh yes, thank you for ice cream!
Charlotte P. Boyles
Looking at the date on her journal entry, I am surprised by her clarity of thought for writing out what was on her heart, as Alzheimer’s had dealt some harsh memory-robbing blows. I recall we were in the midst of packing her belongings and getting ready for her big move at that time. In just over a week, she would leave the place she had called “home” for the past 55 years and move 90 miles away to a little place near me, and I was having trouble with mom unpacking the boxes that I had spent hours packing. Finding her prayer for grace during what was a very stressful time for her, well, it just speaks to my heart about how I can trust God for my future too. Even if it includes Alzheimer’s.
Momma undoubtedly bought several watches during her lengthy nursing career. But, as she often recounted the story of her watch, she had been wearing this very watch since she graduated from nursing school in 1955. You see, a watch with a sweep second hand was essential in my mother’s era of nursing. It kept you and your doctor on schedule and kept you accountable for the time you spent on breaks. When updating a patient’s medical chart (no computers back then), it provided the time for documentation purposes. Its sweep second hand was the essential tool momma used day in and day out to measure a patient’s heart rate in 15-second increments of time.
Holding my mom’s watch in my hands today, I recalled how meaningful it was to her, even after my mom could no longer tell time (which I wrote about here). A mind clouded by Alzheimer’s loses the ability to measure the passage of time or interpret the face of a watch somewhere in the middle stages of the disease’s progressive march through the brain.
Even after my mother could no longer tell time, I invested a good bit of time in finding my mom’s treasured watch when the paranoia of dementia would cause her to occasionally hide it for safekeeping. I had the band resized when she slimmed down and it spun on her wrist. I even took it in for repairs once and replaced the battery on several occasions. The natural motions of her body would wind the self-winding watch (another clue that it was NOT from 1955), but Momma would wind it anyway because that was what she remembered doing in days gone by. Over time, this damaged the watch beyond repair, but she still loved to wear it.
When my mom moved into assisted living memory care and I saw how she would distribute her things all over the building (and borrow the belongings of others without consent), I decided to take her watch home with me for safekeeping. I hated to take something that was hers, but the story of the watch had also become something I treasured. Thankfully, it didn’t seem to matter much to mom — especially since her friend and BeeHive neighbor Roy didn’t seem to mind if mom (ahem!) borrowed his watch from time to time.
One day I noticed my mom sidle up her wheelchair to another lady friend at BeeHive. She seemed concerned that her friend was slumped in her wheelchair. Here’s the precious thing I was honored to witness with my own eyes. Momma reached over and gently placed two fingers on her sleepy friend’s wrist, instinctively finding that arterial sweet spot nestled between the thumb and tendon. The nurse in my sweet mother looked at her watchless wrist as she felt her friend’s pulse for about 15 seconds, then smiled with satisfaction and patted her sleeping friend’s hand as she said, “You’re going to be okay.”
“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.
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.
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.
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.”
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.
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.
Since our nation, along with much of the world, is in “stay home” mode so we can stop the spread of COVID-19, a very real threat to public health, I decided it was time to work on one of my unfinished projects – a photo album. It’s a heritage album, I guess. A place where I am putting together memories that my mother has long since lost and that I hope to keep for her.
While working on my special album, I found something very special and totally unexpected. The dictionary calls moments like this serendipity: finding something amazing when you are not looking for it.
My serendipitous find happened while I was flipping through a pocket-folder where I had tucked various photos, cards and personal letters mom had kept through the years. I had always hoped to find time to examine them more closely at a later date. That day had now arrived.
As I thumbed through the folder, my eyes fell upon something lovingly familiar. It was one of my great-grandmother’s many handwritten notes. I would recognize her handwriting anywhere. I sat down at the kitchen table to read it. I first examined the lovely floral note card on which it was written, and remembered having received little notes from her on that very same stationery. This one was addressed to her granddaughter, my mom, and its content was sweetly characteristic of her newsy and thoughtfully written notes. Like many of her era, great-grandma always used a fountain pen – which I thought looked extra-special. This particular note was undated, but in the same general pile as another letter she had written to my brother in 1972. As I read the final paragraph, my eyes stung with the tears of realization that I was quite possibly reading the treasured last note my great-grandmother had written to my mom. I pondered the last sentence, which read:
“I will always remember my Charlotte and her hands.”
Bessie Hamilton Peet (~1972)
As I read the last sentence, I wished I knew the story behind those words. In what special ways had my mother’s hands touched her grandmother’s life? Suddenly, I remembered a photo I had taken that very day. It was this photo of my mother’s beautiful hands. I snapped the picture because I didn’t want to ever forget my mother’s gentle, loving hands either.
Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.
James 1:17 (ESV)
I’m not going to sugar-coat it. This leg of mom’s Alzheimer’s journey is rough. To this point in our journey together, there has almost always been a spark of recognition and joy in mom’s eyes when she sees me. In her mind’s eye, I am not always her daughter, but I’m always someone special: sometimes her mom, other days her sister or best friend. Gina, co-owner of BeeHive, and also Mom’s nurse, pointed out that I am all of mom’s favorite people rolled up into one. That was a sweet thought – something I hadn’t thought of before.
Not today. The light was gone out of her beautiful brown eyes. In those eyes which once held kindness, joy, and sometimes a bit of mischief, today there was only a blankness, ambivalence, and a lack of recognition that goes deeper than the momentary blips I’ve seen thus far. I know that this is part of the disease process as Alzheimer’s claims more of her mind and beautiful spirit, but it’s still rough on the heart.
God, in His grace, knew I would need extra encouragement today, so He had prepared three special gifts for me.
The first gift was breakfast with Maureen, a friend I haven’t seen in a few decades. We met up at Hubbard Avenue Diner in Middleton and enjoyed one another’s company and two hours of sharing where our individual journeys had taken us over the past few decades of life. What a blessing.
My pastor met up with me in the parking lot at BeeHive bearing today’s second gift: encouragement in the form of a favorite salad he had purchased for me. BeeHive is under precautionary lock-down due to the coronavirus threat, thus the parking lot meeting place. Truth be told, the greatest gift was actually not the salad – it was his listening ear and being wrapped in a prayer in the middle of a parking lot.
God had my momma deliver the third gift. Mom hadn’t recognized me at all today, so this gift was quite unexpected. I was watching her blindly fiddle-footing around in her wheelchair when she sidled up to where I was seated and, without a word, took my hand in hers and began examining it and stroking it with gentleness. Patting my hand in hers, she looked into my eyes and let me see the love in hers.
My poor mom! She’s got quite a few nasty facial bruises and abrasions sustained in recent falls. Let me be quick to say that my mom receives EXCELLENT care in her abode at BeeHive. None of the falls she has experienced have anything to do with her not being closely monitored. The staff does their best to keep an eye on her, and so do I.
Case in point: earlier this week I was just a few feet away from her when she suddenly decided she was going to attempt to transfer herself from her wheelchair to a nearby recliner. She ended up unceremoniously dumping herself onto the floor in the process. Thankfully, she wasn’t injured this time, but that just demonstrates how quick and stealth-like she can be when she sets her mind to doing something.
Much thought and effort goes into “how to keep Charlotte safe” at BeeHive. I surely appreciate the staff’s diligence, their willingness to keep tweaking medications, schedules, and processes in order to create an environment where she is as safe as possible. I make every effort to work with them and support them in their endeavors, and her team of caregivers is always more than willing to give my ideas a try.
I know some of the readers of my blog may be experiencing similar difficulties with their loved ones, so thought I’d share a few things we have tried which seem to help.
A floor alarm is in use by her bed, which helps the staff know when her feet hit the floor. She also has a wheelchair alarm which will alert them if she lifts her weight off of the chair. Unfortunately, alarms only let you know that the loved one is already in motion and caregivers may not be near enough to respond before the incident occurs. The greatest strength of an alarm is that it brings help sooner than later.
Learning her habits and “reading” her signals is a very important part of anticipating her risky behavior. For instance, they know that mom can no longer reliably sense when she has to use a toilet, and her ability to voice a need to “go” varies greatly daily. However, through observing mom and recording her habits, they know that it is wise to wait about 45 minutes after lunch when she’s getting a bit sleepy to take her to use the restroom, and then put her in bed for an afternoon nap.
Mom likes to tootle around in her wheelchair, but can get into a bit of trouble as she explores the rooms of other residents and tries to get in their beds or chairs. Restraints aren’t allowed, but her caregivers have learned that mom will stay put and sometimes take a quick nap if she is placed in one of their comfy recliners (and reclined). She also likes to sleep on one of the roomy couches; if she seems sleepy and is trying to transfer herself to a couch, they help her get comfy by bringing her a blanket and pillow. Dolly sometimes joins her for a little snooze.
Mom’s risk for falls is complicated by the fact that she seems to enjoy being on the floor. Sometimes she is playing on the floor like a small child, inspecting the wheels on her wheelchair, or scootching around on her bum in a crab-like crawl (see the sassy video below). Other times she just wants to sleep on the floor. It’s HOW she gets down onto the floor that is risky and causing her injuries (that and falling asleep in her wheelchair and then toppling out). If the staff sees her attempting to get down on the floor, they have learned she will become agitated if they keep picking her up and putting her in her chair or bed. It truly is best to help her get down there safely and let her hangout down there until it’s time for the next meal or activity.
As you can imagine, the sight of a frail-looking, elderly sweetheart crawling around on the floor is a bit disturbing to visiting family and guests who sometimes assume that the staff is just not paying attention.
To keep the staff safe from undue criticism, my granddaughter Mia helped me decorate a few little fabric signs for her back which help communicate that she is safe and happy. The staff pins the little signs to her sweater so she can play to her hearts content and everyone knows she’s okay.
Mom’s ability to communicate her needs is definitely on a course of swift decline. I know I say this a lot, but I am incredibly grateful for those who lovingly care for my mom. I couldn’t possibly meet mom’s needs as well and keep her safe if I were caring for her on my own. How wonderful that, through BeeHive Homes of Oregon, Agrace Hospice, and Bluestone Physicians Group, I have doctors, nurses, nursing assistants, personal care workers, a cook, a pharmacist, a social worker, and an activity director who ALL care about my mom so very much.