The Decline: Bumper Car Wheelchair

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.

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 (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:

Who have I invited to help me grow spiritually?”

The Decline: When Birthdays Are No Longer Celebrations

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.

I didn’t remember to take a picture of my cake, but found this photo and a recipe similar to mine.
Photo credit: https://www.keyingredient.com/recipes/3782245034/ding-dong-cake/

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 it.

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.

The Decline: Eyes Closed to Her World

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.

Mom shutting her eyes to her world when she is talking to me.

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.

Touching Lives: Bessie's Note

Every now and again, someone will share a sweet story of how my mom touched their lives in some way. I love to hear the stories and decided I should really take a few moments to write them down so that I can continue to be reminded of her kindness and generosity.

One such story came via Facebook Messenger from my friend (and Mom’s) Janet Farley. Many moons ago Mom, Janet and I served together in our church’s ministry in a club for kids called Awana. I was the director of the girls’ club, mom was my club secretary, and Janet was one of our faithful Awana leaders. Janet’s daughter Bess was one of the clubbers in this ministry to kids in grades 3-6.

Mom sporting her own millinery creation for ‘Crazy Hat’ night in Awana

Janet shared with me that her daughter Bess recently came home with her husband and baby Charlie for a visit. While Bess was at home, she decided to go through some of her old things. Janet shared, “Among them was this kind letter from your mom. Your mom has changed so much, but this note is how most of us think of her. She is a wonderful lady.” Janet shared these photos of the note and I have permission to share it with you:

If you take time to read the notecard you will surely see that my mom made the card so personal. Janet made this observation about the card sent to her daughter,

“I think it is special that this note to a young girl is not just a rushed short card but is full of details and caring.”

Janet Farley

My mother had a good example in both her mother and her grandmother, who faithfully took time to write wonderful letters. Her grandmother, also named Bessie, set aside time each evening to write one long letter and one short note. As her eldest great-granddaughter, I was privileged to receive several of her letters.

Receiving thoughtfully written letters and cards via postal delivery has all but been replaced by email and memes. My sweet momma enjoys reading (and re-reading) the cards she still receives, but Alzheimer’s has advanced to the point where she can no longer compose her own letters. I’ve “inherited” her large stash of stationery, cards and postage stamps. Now it’s my turn to continue this letter writing legacy by picking up a pen and writing to someone who needs encouragement and a little bit of love in an envelope.

The Decline: Getting 'Home' Before Dark

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.

Taking Mini-Breaks for Creativity

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!

Continue reading “Taking Mini-Breaks for Creativity”

The Decline: When God's timing seems slow

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.”

Photo credit: https://biblia.com/bible/esv/Hab2.3

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.