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.
The final week I spent with Momma is now a blur; the days and nights run together in my head. What I do clearly remember is an overwhelming feeling of gratefulness. Each day and night that I spent with her illuminated the many reasons I had to be so grateful; many of those “reasons” wore scrubs and a nametag. It did not matter if they were a nurse, a personal care or nursing assistant, or owner of BeeHive, it was obvious that each had a role in providing care, and they all loved my Momma.
Keeping vigil at my mom’s bedside during that final week, I had the privilege of watching each one of mom’s amazing caregivers at BeeHive, together with her hospice team, do their best to make this last part of my sweet mom’s earthly journey as comfortable and pain-free as possible. Every few hours they would check to see if she needed to be changed and reposition her to prevent bed sores and to ease her struggle with terminal respiratory secretions. Medications were administered to keep pain under control and help dry up some of those bothersome respiratory secretions. If there was any sign of pain or discomfort, they were on it, adjusting her medications or finding that “sweet spot” in positioning her. Since Momma couldn’t swallow to drink anymore, they used swabs to soothe her parched lips and keep her mouth hydrated and clean.
Even though BeeHive is a busy place, as the caregivers worked with her, they never seemed to be in a rush. Gentleness was in their touch whenever they moved her. Each person involved in mom’s care spoke to her just as if she could hear and respond. As each one left the room after performing daily cares, they left behind a kind word of care and endearment.
It could have been my imagination, but as her body weakened and she slipped into a non-responsive state, I sometimes felt as though she was peeking through almost closed eyes, searching to see if I was there. Otherwise, in all of this, momma gave no real indication that she was aware of anyone being in the room with her. I honestly didn’t know if she could hear me, but I talked to her anyway. Even though Momma was quite hard of hearing, I oftentimes placed my phone on her pillow next to her ear and played her favorite hymns while I sang along with tears playing in the corners of my eyes. When I sensed that she was agitated, I stroked her forehead to soothe and quiet her, tracing her forehead and nose with soft touches, much as she did for me when I was a child. When I could do nothing else, I just held her hand.
On Saturday night, I noticed Momma making kissing sounds. Her eyes were closed, but her head was raised off her pillow and she was definitely kissing the air. Her kisses were insistent, so I thought perhaps she wanted to give her Dolly a kiss. Momma loved that Dolly, taking care of her (and a host of other dolls) as if they were her children. I put Dolly’s cheek to Momma’s lips and Momma gave her little butterfly kisses. I thought that was so sweet, so tucked Dolly back in with Momma.
But Momma kept making kisses. So I put my cheek to Momma’s lips to receive her kisses. Momma kissed my cheek a few times and I kissed hers. Momma stopped kissing and relaxed her head on the pillow.
It was then that I knew those butterfly kisses were for me. My sweet Momma knew I was there and she was trying to give me a goodbye kiss. Perhaps Momma knew that heaven was drawing near and that she would be with Jesus in the morning.
My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.
What signs did you see that made you suspect that your mom was experiencing memory loss?
One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:
Repeating stories multiple times at the dinner table.
Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.
Mummy-wrapped banana peel from Momma’s purse
Asking the same question over and over again.
A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.
Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)
Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
Hiding her checkbooks.
Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
Repeating stories. Oh, I think I already said that.
Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
A diminished desire to attend church or get together with her friends.
Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
Multiple cans of Coke begun, but not finished.
Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
Inordinate amounts of junk mail.
She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
She kept renewing her magazines, even if she had YEARS left on the subscriptions.
Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
Hiding valuables and claiming they were stolen.
Growing frustration with using a telephone or a once-familiar remote control.
When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).
Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.
Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?
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.
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.
“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.
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.
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.
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.
As a kid, there was one ride at a carnival or theme park where you would rarely see me: bumper cars. I hated them. Sorry, I don’t have a photo to illustrate this paragraph; if I did, I would be the terrified looking kid (or adult) stuck in the corner with everybody crashing into me. There was nothing fun about it. I can probably count on one hand the number of times I have allowed myself to be in a bumper car. Each of those times my participation was only under great duress from a friend. The last time was when my kids were small (and super cute), with big eyes and sweet voices that pleaded, “Puhlleeeze, Mom!” So, I acquiesced and ended up in another corner – this time my own kids taking devious joy in crashing into me. I can smile about it now, but back then I couldn’t wait to get out of that car!
You might be wondering why I even bring up this crazy aversion related to bumper cars. Something I saw in my momma’s world today reminded me of my scary experience with bumper cars. Let me tell you about it.
As I mentioned in one of my last posts (you can read it here), mom has been closing her eyes to the world around her. Perhaps she is just tired, but I think it is her way of shutting out some of the confusing stimuli. Living life with her eyes closed may offer a measure of control over her world. In combination with her inability to hear, closing her eyes may bring peace and control to her chaotic world of life with Alzheimer’s. Nowadays, she eats most meals with her eyes closed; a bit messy and effectively shuts out any interaction with her table-mates. When she is offered the medications she takes, Mom often refuses by closing her eyes tight. In effect, she makes the unpleasant things in life disappear, much like a child who thinks you can’t see them if they cover their eyes and can’t see you.
Mom’s latest eyes closed activity has been fiddle-footing around in her wheelchair with her eyes closed. Watching her bump into walls and other obstructions in her path reminds me very much of driving a bumper car with her eyes closed. Over and over again, she’ll try to propel herself through a doorway, not bothering to open her eyes to see that she is hung up on the door frame. As afternoon anxiety seeps into her consciousness, she will bump-bump-bump her way around her room, sometimes getting stuck in a corner and then whimpering that she is stuck. When offered help, she often refuses and continues to whimper about her stuck-ness, rather than accept help from someone who cares about her.
As I watched my mom struggle with this today, I was reminded of another person who has similar self-imposed blindness.
How many times do I keep bump-bump-bumping into obstacles to growth in my life without bothering to open my eyes to my need for help?
In an effort to encourage us to apply the truth of God’s Word in our lives, our pastor likes to give us homework at the close of his sermons. I try very hard to complete at least one of the three suggested assignments each week. This week’s sermon really challenged me (you can hear “Declaring War in 2020 – Part 3” here), and one of his suggested assignments really resonated with me. So here’s the assignment I’m prayerfully considering this week: