Alzheimer’s – Page 8 – Barefoot Lily Lady

Playing in the Dirt Again

It feels good to be outdoors playing in the dirt again. In a day when COVID-19 has us squirreled away indefinitely in the relative safety of our own homes, spending time in my garden this week has been a welcome repose and heartsome encouragement.

Crocus are already showing off their comely petals in shades of purple, and a few white ones too. Blue muscari brings teeny-tiny punches of the deepest, bluest blue in patches scattered here and there. Brilliant, sunshine yellow clusters of daffodils dot my Schumann Drive landscape, with tulips promising to take their turn in the next few weeks.

As I pull back the winter blanket of leaves and mulch in one bed, then another, I’m seeing hints of more beauty yet to come. Peonies have poked their little red tips about an inch above the ground and I’m already dreaming of their beautiful petals in reds, pinks, white and a very special yellow one too. The foliage of my beautiful daylilies is already several inches high and seem to whisper their promise, “Summer is coming.”

My spring garden whispers, “There’s beauty yet to come.”

Some flowers are spilling out of the bounds I had imposed on them, so I begin digging up a few of the plants nearest the garden’s edge. Some go in my compost bin, a few are transplanted elsewhere, but most are placed in a big plastic tub marked ‘Free Perennials’ and placed at the curb end of my driveway where they are offered to those passing by in the neighborhood. Each offering of future beauty is placed in its own plastic or paper bag, with any information I can offer about the plant scribbled on the bag. The bin is usually emptied in a day or two. I find it a lovely thought knowing that little bits of my garden’s loveliness will soon be springing up in other neighborhood gardens.

Today, as I plunged my garden trowel into the spring-softened dirt to scoop up one of the plants for my driveway offerings, I was delighted to find a sleepy toad still nestled in the dirt on my trowel. I breathed a sigh of relief that I didn’t injure him; it’s an honor to find toads, as I know they will do me countless favors in the months to come as they feast on slugs and snails and other garden pests. I pried my little plant offering from the dirt, then tucked the toad back in under a blanket of dirt where he could continue his slumber before awakening as my garden helper.

Today’s discoveries included unearthing a bunny nest and getting to see the cute little bunny butts within (I know I will regret thinking they are cute when I start seeing tops of my plants nibbled off as bunny fodder). Unlike toads, bunnies are not known for their propensity for helping in the garden.

While I will not refuse offers of human help in my garden, I rather like the solitude it offers. It’s a time to pray and to reflect on life’s blessings. Any frustrations I might be feeling seem to disappear into the soft earth as I work it. This solitary time in the garden is also a great time to sing (or hum) in praise to God. With the discovery of my little garden friends, it seemed fitting that my mind went to a song I learned when I was 11 or 12 years old, very early in my Christian walk. We don’t sing this hymn much anymore, but I recall learning the song in a club for kids called Awana. Not very long ago, I taught the song to the kids in our Sunday School so they would have it in their hearts too. It would be my pleasure to share the lyrics in the hopes that you would be blessed by them, and that your soul would find rest in the thought of all the wonders He has wrought.

This Is My Father’s World | Maltbie D. Babcock
This is my Father’s world,
And to my list’ning ears
All nature sings, and round me rings
The music of the spheres.
This is my Father’s world:
I rest me in the thought
Of rocks and trees, of skies and seas—
His hand the wonders wrought.
This is my Father’s world:
The birds their carols raise,
The morning light, the lily white,
Declare their Maker’s praise.
This is my Father’s world:
He shines in all that’s fair;
In the rustling grass I hear Him pass,
He speaks to me everywhere.
This is my Father’s world:
Oh, let me ne’er forget
That though the wrong seems oft so strong,
God is the ruler yet.
This is my Father’s world,
The battle is not done:
Jesus who died shall be satisfied,
And earth and Heav’n be one.

My Mother’s Hands

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.

A Special Moment

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.

The Decline: Falls & Playing on the Floor

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 is safe. I am blessed.

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 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:

“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 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.

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!