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.
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 personal 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.
Myself.
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 and one of his suggested assignments really resonated with me. So here’s the assignment I’m prayerfully considering this week:
I have all sorts of excuses for why I’ve been a little hit-or-miss in the blogging department. The best reason I can proffer is that I’ve been taking little breaks for a bit of creativity of a different sort.
First up, a very special sewing project. My son sent me a text one night asking if I would make a Christmas stocking for a teen who is staying with them. I had made a stocking for each of my grandchildren prior to their first Christmas and he was hoping Danni could have a similar stocking too. I was so very glad he asked because I had it in my heart to do something for her, but wasn’t sure what she would enjoy. This would be fun!
With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken.
Sometimes I wrestle with whether or not I should write about something related to caring for a loved one with dementia. Some things just feel too private, too personal. In writing about an especially sensitive topic, I wonder if I will dishonor my mother in some way. I’ve wrestled earnestly with today’s topic for these reasons and more. However, as I speak with others who are caring for a loved one suffering from memory loss, many of them are dealing with the same thing. So, for the sake of those who need to know they’re not alone, here’s the topic:
Swearing.
As Mom’s battle with Alzheimer’s dementia intensifies, so does the bad language and harshness of the tongue. Those who help provide her care each day assure me she is still incredibly sweet – they love, love, LOVE her to pieces. They tell me that when her tongue gets sharp, she almost immediately apologizes and layers on the salve of kindness.
Before Alzheimer’s, Momma would never swear at someone. In a moment of frustration, she may think a curse word in response to a frustrating situation, but she would never say it out loud. She would quickly reign in her frustration and replace it with graciousness.
With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken. With arms flailing, out come the curse words when her caregiver tries (sometimes in vain) to help her shower or get dressed. She’ll even blurt out curse words at me, the one who provides daily love and care for her.
It hurts my heart to hear her swear and say ugly, mean-spirited things.
Before Alzheimer’s Momma’s tongue held kind words, not critical and harsh ones. Her tongue reflected her actions and her love for her Savior; she was gracious and benevolent with both. She’d never blurt out what she thinks. She’d just smile and keep her thoughts to herself.
I know it’s the result of this disease. But, I also see very clearly that the curse of the sinful nature we are all born with is uncovered and revealed by this relentless and wicked disease. I know in my heart how much my mother loves Jesus. And I know how immersed she was in the Scriptures and what a prayer warrior she was before this disease stripped her mind of the ability to recall the things she has learned.
I always hoped that she would defy the odds of this disease and never forget the Scriptures she has learned. But now, it seems, she cannot understand what she is reading and tells me that the Bible I keep on her nightstand isn’t hers, even though it is filled with her own handwritten notes, prayers and thoughts.
I always hoped that music and the great hymns of the faith would be a help and stronghold for her in her later years. But she is usually quite ambivalent to it – although her poor hearing might play a role in that.
I always hoped she wouldn’t forget that she is a child of the King. On this last unfulfilled hope – she has forgotten, but God has not. She is His child and He knows it. He remembers her and will never forget – never forsake.
Someday, when all is made new, music will be restored and she will sing a new song in heaven. Best of all, she will meet the One she read about in Scriptures and has trusted by faith – Jesus – the living Word.
Some of the signs of advancing memory loss can be seen most easily when viewed in retrospect.
Several years ago, when mom was still living in her own home in Milwaukee, I noticed that she wasn’t making it to her weekly “lunch bunch” restaurant gathering with a few friends. If I’d ask her about it, she would have a plausible reason. It wasn’t until I stumbled upon an envelope where she had written down the names of her friends in this group that I began to understand. Mom was in an earlier stage of memory loss – a very difficult stage where she knew her memory was failing. In this stage, mom had many strategies in place to help her remember things, including creating little “cheat sheets” for herself. One can only imagine her angst in forgetting the names of her good friends. As I looked at the envelope, I could see that, as the names came to mind, she would write them down – over and over again, as if willing herself not to forget.
Looking back now, I think it was just easier on her ego and heart to just stop going. My heart was sad when she stopped having lunch with her sweet friends…and even sadder when she stopped going to church altogether.
Looking back in the rear-view mirror of life, I can now clearly see that pulling away from the friends she loved was one of the huge signs of her advancing Alzheimer’s. As much as she loved these ladies, she can no longer remember their names – even with prompting. But I remember and am thanking God for these ladies. May I be the kind of friend to someone else that you were to my sweet mother.
What a blessing to receive a little ‘hello’ in the mail. I know I’ve told you about my friend Suzy who sends a beautiful handmade card each week. At first her cards were addressed to my mom (but always meant a lot to me too). About the time Momma moved to BeeHive, Alzheimer’s began to chip away at her ability to read and appreciate her mail. Suzy asked if she should discontinue sending the cards. I hesitated in answering because I loved them so much. The very next week, Suzy began addressing those encouraging notes to me. Each note always brightens my day, but this particular note was extra-special. Suzy chose to inscribe an encouraging quote from one of my favorite authors:
Life is hard.
God is good.
Glory is coming.
Therefore, stand firm in His grace.
John Piper
It is amazing to observe how many times my friend’s weekly ministry of written encouragement and exhortation “just happens to be” exactly what I need on the day I receive the mail and zip open the envelope.
The day I received this ‘hello’ included several personal challenges for me and even harder physical challenges for Momma. God, in his goodness, allowed me to better understand just how hard life is for my sweet mother, and how incredibly blessed she is to be in a place where she is so loved and so cared for. I could definitely see His goodness in the midst of this hard day.
When one wrestles with the thought of placing a loved one with memory loss into assisted living, many questions come to mind while making that life altering decision. Thankfully, there are many good books related to caring for a loved one with memory loss (and I’ve probably read most of them). If I could only recommend one, it would be Jolene Brackey’s, Creating Moments of Joy. [I wrote a little book review about this book here.]
I love this page. I live this page.
It’s important to have realistic expectations concerning assisted living memory care.
It has been almost four months since we moved Momma into assisted living at BeeHive Homes of Oregon, WI. She has made a great transition – not without its hiccups, but BeeHive is definitely a gift from God for my sweet mother. In these four months I have fallen in love with each resident who lives there with her and each one responsible for her care.
There are 16 rooms at BeeHive. At any given moment you might find my dear mother in any one of them, although she has her favorites. She loves to nap in Carol’s room, enjoys the sunny window in Caroline’s room, and can often be found rearranging pillows and tending to every one else’s babies in her neighbor Kathi’s room.
On any given day, my mom might be wearing her favorite outfit, or might be looking cute as can be in another lady’s pajamas. The other day I noticed mom wearing her nearby neighbor Roy’s watch; she also had his remote control and he had hers. I’m really not sure who has her colored pencil set, it’s been on the lam for a few weeks, but know they’ll turn up some day. She probably put them in someone else’s drawer for safekeeping on one of her daily adventures tooling around in her wheelchair.
Momma is a gatherer. If something is missing from someone else’s room, it can reasonably be assumed Charlotte probably has it for safe-keeping in her purse, or wrapped in a blanket and tucked away in a drawer in her room. Toilet paper is irresistible. An unattended doll or stuffed animal won’t be lonely for long if she can help it. She even managed to pick up an unattended cell phone that belonged to one of the hospice staff. I half-jokingly remind the staff that if something is missing, just check Charlotte’s purse and drawers–it’s probably there.
Only one of these dolls belongs to Momma – but they are all equally cared for and loved. [Photo credit: Kathleen Zelinski]
Slowly, but surely, I’m learning whose stuff belongs to whom (most of it is labeled). I spend the first few minutes of my daily visit returning things she has borrowed and retrieving things she has tucked into places where they don’t belong and returning it to the right place.
One thing is for sure — Momma belongs and is in the right place.
Barefoot Lily Lady 