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.
If you’ve read my blog for any length of time, you may have noticed that I have been candidly sharing what is happening in my mom’s world living with the diagnosis of Alzheimer’s. The story has been a few years in the telling; parts of her story are not easy to tell, other parts are sprinkled with joy and little bits of humor. The part of her story that we are in right now is very hard to write about, but telling her story has been important to me because I know there are others traveling on this path and perhaps our experience can shed a little light on the path of those traveling behind us, and comfort and companionship for others.
In addition to blogging about mom’s story, I have been finding great comfort in listening to audiobooks while on this somewhat solitary part of mom’s journey Home. Books are great companions. As a wanna-be writer, I enjoy seeing how various authors tell their stories, develop characters, and weave their story lines. One of my friends likes to jump ahead to the last chapter of books and read how the story ends before she decides whether the book is worth reading. If she likes how the story ends, she’ll read the book. She explains, “Knowing how the story ends doesn’t ruin the story for me.” For my friend, there is enjoyment in knowing where the plot is headed. She loves noticing how each character is introduced and how the little twists and turns in the story line fit into how the story will ultimately end.
A phone call I received on Sunday night makes me feel like I’m about to skip ahead in mom’s story. My phone rang at 7:09 pm and lasted only one minute. The call was Kate from BeeHive calling to tell me that they believed my mom had suffered a significant stroke. Kate’s voice was filled with compassion. She didn’t have to say it, but we both knew that this new twist meant that we were most likely in mom’s final chapter of life.
I told Kate I would be there in a few minutes and then hurriedly tossed a few changes of clothing in my backpack, grabbed my Bible and my favorite pillow, then headed toward BeeHive.
I am so thankful I already know the end of the story. Alzheimer’s loses. God wins.
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.
Today was a mostly eyes closed kind of day.
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.
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:
Mom turned 86 years old yesterday. I think I have been saying this for three years, but I honestly believe this may be the last birthday she will celebrate on this side of heaven. Nonetheless, I baked a cake especially for her and brought it to share with her friends at BeeHive.
In my heart, I knew the birthday cake probably wouldn’t matter to her. But it mattered to me. My mother’s life is worth celebrating.
As expected, she enjoyed eating the cake, but her birthday didn’t phase her. She didn’t seem to understand or believe it when I told her it was her birthday, and the greetings of her friends and caregivers were met with disbelief and a blank expression. She looked quite confused (and maybe a little mad at me) while her friends and caregivers sang ‘Happy Birthday’ to her after lunch. She didn’t want to blow out the candle on her piece of cake, but she enjoyed eating the cake.
She didn’t want to open the cards from friends and family, or the present her brother sent her. She didn’t seem aware of the sweet gift of balloons and a cute little teddy bear that one of the staff purchased for her – but I basked in their love for her on her behalf. I opened the cards and gifts for her and set them up where she could see and hopefully enjoy them.
The birthday display didn’t seem matter to her, but it mattered to me. My mother’s life is worth celebrating.
As we sat in her bedroom that afternoon, she would talk to me, but her eyes would be closed, or open just a tiny sliver. She would scootch around in her room a bit in her wheelchair, but with eyes closed and directionless. I could tell she really wanted to go to bed and sleep, so I asked the staff to help me get her in bed.
Mom shuts her eyes to her world when she is talking
Today was the first day the staff needed to use a Hoyer lift to help her get out of her wheelchair and into bed. The fact that it was her birthday wasn’t lost on me. This contraption is a gift; a gift which will keep mom safer as she transfers. This gift will also keep those who care for her safe from injuring their own backs as they assist her. Part of me wanted to cry knowing that mom was at the stage of care where this device was even necessary; but the other part of me smiled knowing that it was a blessing.
As I celebrate this woman’s extraordinary life, I pray for those who are caring for her. They are a blessing to me, and a gift worth celebrating too.
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.
Credit for all photos in this blog post goes to: Kathleen Zelinski, BeeHive Activity Director
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.
[Please watch this video if you’d like to learn more about BeeHive Homes of Oregon, WI.]
Each day after lunch, Mom and I usually sit quietly together in her room watching all the goings-on outside of her window. There is so much to see: cars and trucks as they drive in and out, people who come and go, the construction happening next door and (best of all) the birds at the feeders just a few feet away.
Today sweet Carol stopped by for a little after lunch visit. Without a word, Carol took me by the hand, urging me to rise from my chair and take a walk with her. I have taken many such walks with Carol, so gave Momma a quick hug and told her I’d be right back. Carol gave my hand another insistent tug and off we strolled hand-in-hand. As I left the room Momma suddenly addressed our friend Carol in an obviously jealous tone of voice blurting, “Hey! That’s MY Momma!”
Here’s a photo of a sweeter moment for Momma and her friend Carol.
Did you ever lose a favorite recipe? You know the kind I mean: the recipe card that has been in your recipe box for years and is now a bit tattered and stained from years of use. Well, I recently wanted to bake a batch of cookies I’ve been making since my kids were little, but couldn’t find that handwritten recipe card anywhere. It was one of those recipes copied from someone else with my own “tweaks” scribbled in the margins.
Bummer!
I searched a few of my recipe books and found a similar recipe. It had all the right ingredients, so I mixed up a batch and baked them for my mom’s friends who live with her in assisted living memory care. The cookies baked up a bit thin and crumbly. The ingredients were right, but were obviously not in the right proportions. My friend Lola’s husband is one of the residents who REALLY liked the not-quite-perfect cookies. She heard my lament about losing my recipe card and went home and searched through her cookbooks in an effort to find the recipe for me. Imagine my delight when she surprised me yesterday by bringing in a church cookbook with a recipe that looked to be closer to the ingredient proportions of my tweaked recipe. Unlike my lost recipe, this version had nuts and didn’t have chocolate chips in it (but that problem is easily remedied).
YAAY! I couldn’t wait to give the recipe a try.
Now, imagine my excitement this morning when I stumbled upon a forgotten blog draft I had created back on July 9th when I had last baked the cookies for my friends at BeeHive. Someone had asked for the recipe, so I had actually typed out my tweaked recipe with the intent of posting it on my blog.
Well, here it is!
Best-Ever Cookies
Ingredients –
½ c. butter (1 stick, softened)
½ c. shortening (or another stick of butter, which I prefer)
½ c. corn oil (or canola oil)
½ c. coconut oil (I use solid, but oil would work too)
1 c. brown sugar
1 c. granulated sugar
3 c. flour
1 t. salt
1 t. cream of tartar
1 egg
1 T. vanilla extract
1 ½ c. regular oats
1 c. flaked coconut
2 c. Rice Krispies
2 c. semi-sweet chocolate chips (variation: use a combination of semi-sweet, milk chocolate, dark chocolate, butterscotch chips)
Directions –
In a large mixing bowl, combine butter, shortening, corn and coconut oils, brown sugar and granulated sugar. Beat with electric mixer until creamy. Beat in flour, salt and cream of tartar, adding egg and vanilla extract until well combined.
Stir in oats, coconut, cereal, and your choice of chips. Stir until blended. Chill dough for a couple of hours. Scoop chilled dough (~ 1 T of dough) onto ungreased or parchment-lined baking sheets, leaving room between cookies for dough to spread a bit.
Bake at 350 ℉ for 12-14 minutes – until lightly browned on edges. Let set on baking sheet to cool for 10 minutes – cookie will continue to bake and set-up a bit. Remove from cookie sheet to cool completely, then store in air-tight storage container.
Note: the dough freezes well. I place the rounded scoops on a cookie sheet, then place in the freezer until hardened. I then put the frozen dough balls in a ZipLoc bag and freeze until ready to bake.
There is a lesson for my life in here somewhere. Sometimes my life contains all the right ingredients: church, family, personal Bible study, friends, prayer, ministry, housekeeping, gardening … and the like. But oftentimes the proportions are just not quite right. When I start feeling a little spread too thin and “not quite right,” nine times out of ten, I find the time spent in personal Bible study and prayer have diminished over time. Putting those ‘ingredients’ in the proper proportions in my life allows all the other priorities to meld together into a life that is truly satisfying and sweet – God’s ‘Best Ever’ for me.
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.
Momma has had trouble for a number of years now finding the bathroom. Even the last year or so that she lived in her own home (since 1962), it was often “invisible” even though it was located right across the hall from her bedroom. She had a little better success finding the necessary-room when we moved into her senior apartment, but was still perplexed in finding it if she happened to get up on the side of the bed that was not facing her bathroom. With her back to the door, she could not see the bathroom, so it stood to reason that it just didn’t exist.
Later on, when we moved Momma in with us, our tiny half-bath became her bathroom. Even though she passed it oodles of times per day in her trek between the bedroom and kitchen, its location still eluded her. We came up with a very helpful solution by placing a sign above the bathroom door which could be read no matter whether she was seated in the kitchen at her usual spot at the table, or seated on the edge of her bed. [I wrote about that sign here.]
Momma now has a beautiful ensuite bathroom and shower combination at BeeHive, her home over the past several months. Even though her bathroom is just steps away from her bed, she oftentimes still does not “see” it. It’s understandable that she might be confused because the toilet itself is tucked away in the corner and all she can really see from her vantage point on the other side of the door is the walk-in shower and sink. So, I decided to try painting another sign that she could read from just about anywhere in her bedroom.
Wayne cut an appropriate length of board, primed it for me, then put some little hangers on it. I got out my paintbrushes and acrylic paints and had a little fun decorating a “Charlotte’s Bathroom” sign to hang over her bathroom door. I borrowed a ladder from the staff at her assisted living and hung it up for Momma just after lunch today. Mom sat on her bed watching me. As I “tap-tap-tapped” with my little pink hammer driving in the first nail, she read the sign over and over again. “Charlotte’s Bathroom.” She said it was a pretty sign, so I told her that I made it especially for her and was glad she liked it. She thanked me for making it for her and again read the sign as I reached for the second nail.
As I was pounding the second nail into the wall, Momma made me laugh when she said (with great urgency), “Now, where’s the bathroom?”
Barefoot Lily Lady 