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.
Mom has been closing her eyes to her world a lot lately. From what I read, it is further evidence that she is entering the last stage of this disease. Mom can’t hear real well, so I think that it is also her retreat – a safe and quiet space – closed off from the sights and sounds of the world around her which grows less familiar each and every day.
I believe this may be mom’s final winter of life trapped in a body and mind afflicted with Alzheimer’s. This stage morphs wildly from good to bad daily – sometimes several times a day. Mom will take a huge downward step one day, then surprisingly recover the next day – sometimes all within a day.
One day she’ll see me arrive and clap her hands together in joy while announcing to anyone within earshot, “Oh, good! My mother is here!” and the next day (sometimes that same afternoon) there will be a vacant look and not even a glimmer of recognition or joy in her eyes.
One day she’ll be sitting at a table with two of her friends enjoying her lunch in the dining room (and maybe sneaking things off of a nearby plate of a table mate too), and then the next several days she will only eat her meals from her bedside. On those days, she usually eats with her eyes closed. These steps downward are more frequent these days, and times of recovery are increasingly brief.
This may sound crazy. My heart hurts at seeing this happen to my mom, but is strangely comforted by the fact that it is happening too.
Sadness mingled with joy: that is what I feel. Sadness in knowing that she is going through so much pain and confusion, yet I know full well there are harder days ahead. Joy in knowing that her long journey is coming to an end here on earth and that the beautiful and long-awaited day is drawing near when she opens her eyes in Heaven.
The indignities of the later stages of Alzheimer’s are many, and it is hard to watch my mother wrestle with them. As I sit with her on her rough days, I pray for her and ask God to “take her gently Home” in His perfect time. I confess praying too that God would somehow spare me from this oftentimes familial disease.
A few days ago, Momma was having a very rough day. It broke my heart to see her in such pain and mental anguish. As I sat with her and tried to be of comfort, I thought about something my sweet mother-in-law used to pray. Quoting from a poem that was dear to her heart, her prayer was, “God, in your time, please let me get home before dark.”
By God’s providence, I came upon the prayerful poem that Shirley had typed out and prayed by faith for herself. Today, I make this my prayer as well.
Let Me Get Home by Dark
by J. Robertson McQuilkin
It’s sundown, Lord. The shadows of my life stretch back into the dimness of the years long spent. I fear not death, for that grim foe betrays himself at last, thrusting me forever into life: Life with you, unsoiled and free. But I do fear. I fear the Dark Spectre may come too soon – or do I mean, too late? That I should end before I finish or finish, but not well. That I should stain your honor, shame your name, grieve your loving heart. Few, they tell me, finish well… Lord, let me get home before dark.The darkness of a spirit grown mean and small, fruit shriveled on the vine, bitter to the taste of my companions, burden to be borne by those brave few who love me still. No, Lord. Let the fruit grow lush and sweet, A joy to all who taste: Spirit-sign of God at work, stronger, fuller, brighter at the end. Lord let me get home before dark.The darkness of tattered gifts, rust-locked, half-spent or ill-spent. A life that once was used of God now set aside. Grief for glories gone or Fretting for a task God never gave. Mourning in the hollow chambers of memory. Gazing on the faded banners of victories long gone. Cannot I run well unto the end? Lord, let me get home before dark.The outer me decays – I do not fret or ask reprieve. The ebbing strength but weans me from mother earth and grows me up for heaven. I do not cling to shadows cast by immortality. I do not patch the scaffold lent to build the real, eternal me. I do not clutch about me my cocoon, vainly struggling to hold hostage a free spirit pressing to be born.But will I reach the gate in lingering pain, body distorted, grotesque? Or will it be a mind wandering untethered among light phantasies or grim terrors? Of your grace, Father, I humbly ask… Let me get home before dark.
I’m a little behind in my posts concerning my journey alongside momma and her traveling companion: Alzheimer’s. I wrote this a few weeks ago, so am posting today in hopes of helping interested friends and family catch up on how things are going.
I guess my sweet momma has been not-so-sweet in the evenings lately. When I arrived for a recent visit, two of her nurses were glad to see me, as they were discussing “what to do about Charlotte.” They shared with me that, around 8 pm, anxiety sets in and momma becomes a different person – extremely hard to handle, won’t sleep, wanders into other residents’ rooms, won’t stay seated in her wheelchair, gets down on the floor and plays with wires on her alarm mat, talks incessantly and loudly, and demands attention if she feels you’re not paying attention to her.
Cries of “Help me! Help me!” are common now. When help comes, she doesn’t have enough language to be able to articulate what she needs. The staff do their best to guess what she needs, but she sometimes aggressively resists those attempts to help her. She really needs help with all matters related to personal care and getting dressed, but often gets angry and combative when staff try to assist.
I have noticed hints of similar behavior when I am there for lunch. Staff will tell me she refused care in the morning and preferred to sleep over coming out for breakfast. I am usually able to get her up for lunch (we sometimes have to make it a double-team effort), and she’ll sometimes show up in her pajamas, but she will usually eat a hearty lunch (the caregivers put extra food on her plate knowing she won’t ask for more and that it may be her only meal that day).
Some abilities are pretty much gone for good; others seem intermittently absent. On any given day, she may not have a clue as to how to eat what is on her plate. By the following day, she may be eating with relish, including snitching from the plate of a nearby resident who wasn’t interested in their food. One particularly difficult day, mom ate her lunch, but needed coaching for each item on her plate. Some days there was no way she was going to take a shower; then there was the recent rare day when she was super cooperative and blessed her shower attendant with profuse thanks for helping her.
The staff has been busy trying to find the best routine for her. Sometimes it’s tweaking which medications she takes, other times it’s adjusting the timing of medications to see if that will help. The two-fold goal is to keep her as pain-free as possible and help her relax and get some sleep in the evenings without making her too groggy in the mornings.
As hard as all this is, I need my readers to know that I am concerned, but not anxious about this. In fact, my heart is overwhelmingly thankful for the good care she receives from some pretty amazing caregivers. God is at work, even in the hard times.
Not long ago, I spent time in the old testament book of Habakkuk in preparation for teaching from that book in Sunday School. Now, I know I’ve read that book before whenever I came upon it in a “Through the Bible in a year” reading plan checklist. I have probably breezed through its three chapters in this way a handful of times, but I don’t think I’ve ever spent much time pondering it,; and I don’t think I have ever taught from it. This time I listened to it via my Bible app. Next, I read it. Then I listened to it again as I followed the words in my own copy of Scriptures – I always tend to pick up on more of the nuances of a passage when I use more than one sense. Finally, I read what Ray C. Stedman had to say about it in my favorite Bible commentary, Adventuring Through the Bible.
Habakkuk had some complaints for God. I found it comforting to realize that God listened to those complaints, and He answered. Habakkuk shared how hard it was for him to fathom why God allowed such bad things to happen in the world around him; it seemed that God did not care, that He was idly watching all the evil happening, that He was without mercy. The Lord didn’t chide Habakkuk for being a complainer; instead, He answered his complaints by assuring Habakkuk that He was working in the background on things which Habakkuk could not see or understand.
I identified with Habakkuk in his wondering what God is up to and wasn’t afraid to ask the “why” question. I look at what my mother is going through and I sometimes feel as though God is not answering my cries on her behalf…or her own cries for release. While it is not the same context or circumstance, I am reminded that Habakkuk’s God is my God too – and He works today in much the same way as He did when these words were penned: “If it seems slow, wait for it; it will surely come: it will not delay.”
I find myself in deep admiration of the prophet Habakkuk. He asks the questions I wish I was bold enough to ask. He then takes a good look at the perplexing things of life and compares them with what he knows about God, then applies his knowledge of those truths to the problem.
This process of walking alongside Momma on this final leg of her sojourn toward her heavenly home only seems slow to me. But I am confident that God is at work. He is “doing something in the background” of life. Based on what I already know of God, I know that whatever it is, it is good and His timing is perfect.
BeeHive is the name of the wonderful assisted living memory care where my mom lives. On Thursday evening BeeHive certainly lived up to its name with the buzz of excitement as families and friends of the residents and staff gathered at the hive for a Christmas party.
The gathering had all the makings of beautiful affair with great food, fantastic music, a little dancing, and opportunities to meet and greet the loved ones of the 16 residents I have come to love.
Momma couldn’t hear the fantastic music because she is really hard of hearing, but she had her fill of snacks and pleasant conversations. I think she and Dolly enjoyed themselves. They retired early, as crowds aren’t their thing. As is the way with Alzheimer’s, Momma won’t remember a thing about the party in the morning.
Sometimes there is only joy in the moment for our loved one, and memories we make together are ours alone to cherish and remember.
How do you say ‘goodbye’ to a loved one with Alzheimer’s? I’m not talking about the final goodbye at this moment, but the daily goodbyes when you have to leave your loved one.
I usually spend a few hours with my mom each day. She really doesn’t like to see me leave and, much like it may have been when I was a toddler and she left me with a babysitter, she can get a bit sulky and fussy. I’m discovering there is an art to making those daily goodbyes a little less stressful.
The number one thing I have learned is never say, “I have to go home now.” Saying the word “home” is an involuntary trigger for her to feel unsettled, as she constantly wants to “go home” too.
I have discovered that it’s really important to give her a reassuring hug and tell her that I love her, but sometimes that’s not enough. Here are a few other tactics which help make daily goodbyes less stressful for my mom:
I don’t mention how long I’m going to be gone. Instead of “I’ll see you tomorrow,” I say, “I’ll see you a little later.” Even if I’m going to be gone for a few days, it’s really important to offer her the hope that I will be back soon.
If she asks where I’m going, I sometimes say, “I’m going to work, but I’ll be back later.” While I don’t really go to a job, I am not straying far from the truth because I really DO need to go home and get some laundry and housework done.
If at all possible, I try to leave when she is resting comfortably in her bed. She may look for her family when she wakes up, but she will be looking for me expectantly, rather than feeling like I have abandoned her.
Momma’s comfort item is her dolly. I try to make sure she has it in her lap and is occupied with “Dolly” when I slip away.
Snacks help. I sometimes leave a cookie on mom’s windowsill. Even if she sees me walking to my car (her window faces the parking lot), the next thing she will see is her special treat and then all is well.
Loving and gentle touches help her relax. You know how it feels when someone plays with your hair, or runs a brush through it? It’s an amazing feeling. I try to be there when mom finishes her twice weekly shower, as she is usually not a particularly willing participant in that activity. The minute she sees me after she is wheeled out of the shower room, she looks SO relieved. I take those post-shower moments to blow-dry her hair and gently brush it.