Facebook occasionally reminds me of things I wrote in my pre-blogging days. It’s hard to believe that six years have passed since I wrote “Caring for the Caregiver,” a post born out of my personal experience in being the primary family caregiver for my sweet mother.
It is my prayer that this photo-filled memory of mine will inspire many to look for ways to love on caregivers “with actions and in truth.”
Mom is so focused on her coloring. I’ve been sitting at the table with her as she colored for the past few hours. I just stood up to move a bit and she looked up and said in a tone of surprise, “Oh hi! When did you get here?” Sad, but sweet. Today I’ve been her mom. When I told her it was time to put her coloring away and get ready for bed, she stalled and pouted just like a child. “But I’m not tired! You always make me quit when I’m having fun!”
Cindie’s Caregiving Journal, February 11, 2018
There are those who wonder why caregiving children speak to their memory-challenged parent like they are a child. Some also believe it to be a bit demeaning to provide child-like things for them to do as activities.
I get the concern. I’ve had that concern in the past too.
Not anymore.
Now that I have journeyed alongside my mother (who had Alzheimer’s), I totally get it.
As Alzheimer’s claimed more and more of her cognitive abilities, it seemed that mom traveled backward in time to a time when she was much younger. Toward the end, she became very childlike. She often thought I was her mom. There was no use in fighting the role reversal—it was part of the disease progression.
Like a child, mom enjoyed coloring. When I first introduced adult coloring books, her coloring was magnificent and her eye for color was impeccable. She stayed within the lines and had the art of “shading” down pat. Now, as I look through her coloring books, I can see the obvious regression in ability. In the beginning, mom would use all of her colors; toward the end, she settled in on yellow and green. In the beginning, mom’s color choices would closely approximate the true color of the object she was coloring. As the disease advanced, the coloring books I purchased for her were simpler, in keeping with her diminishing artistic abilities and instinct for color. Ultimately, in the last few months of her life, much like a child who colors everything in their favorite color, she would color everything yellow or green.
Correspondingly, mom’s behavior changed. She’d have times when she was unhappy about something and would throw a childlike tantrum. Tears, pitiful pouting face, crossed arms and all. Mom reverted to baby-like play on the floor, preferring to crawl about on the floor, rather than tootle around in her wheelchair. Like the child running out into a crowded room butt-naked, inhibitions over inappropriate public behavior goes by the wayside too.
On those days when mom thought I was her mom, I soon learned it was in mom’s best interest if I would just play that role. Putting on the soothing “mom voice” was part of it. Likewise, when encouraging her to do what needed to be done (like changing her clothing), it was necessary to communicate with her as I would with a young child or (sometimes) like a toddler, using what I’ll call “simple speak.”
So, dear reader who has never experienced the role of caregiver, please be gentle and understanding with the caregivers you know. Your caregiving friend is living in an upside-down world juggling sippy-cups, adult-size diapers and discreet diaper bags, mealtime feeding issues, and lack of good sleep. Believe me, your prayerful encouragement and friendship would mean the world to them.
I work a few days each week as a baker of all things sweet at a beautiful assisted living and memory care home – the very same place where my dear mom spent her last year on earth. The people who reside here are placed for various needs, most of them needing more help than family can provide with matters related to living life with short-term memory loss. In my short time there as an employee I am getting to know and love each resident, but I do have a few favorites. One of those favorites is as sweet as she is feisty. One minute she can be doling out compliments and kisses, the next she’s telling me to stick my mixer where the sun don’t shine.
But I love her to pieces.
I think she holds a special place in my heart because she reminds me in small ways of my mom (pictured here), who also had some bad days as she wrestled with Alzheimer’s in her later years of life.
In the years before Alzheimer’s, my mom was never one to use foul language; the worst I ever heard come from her mouth when I was a kid was an under her breath, “Shhh-ugar!” Yet, in the throes of the later stages of Alzheimer’s, my mom would occasionally make me blush with her language. If she were in her right mind, she’d be truly embarrassed.
Not long ago my new friend had a really bad day — I knew from the minute I walked in the door that morning that it was going to be a doozy when she began swearing at me for just saying, “Good morning.”
When any of our residents are having a bad day, I can’t really help much, as I’m “just the baker” and not directly involved in resident care. However, there is always one thing I can do. As my hands keep busy at the work of baking desserts, I can pray for those caring for the special needs of the residents. On that morning, I prayed for everyone involved in doing what was best for her, each one doing so with compassion and grace. All the while, I fought back tears for this dear woman who was living out one of my biggest fears for my future. You see, I struggle with the fear that Alzheimer’s may one day strip the filters from my tongue and that I might use uncharacteristically foul and abusive language.
So, how should caregivers deal with the foul language issue in their loved one with dementia? To answer that question, let me share a link to a super-helpful article from Very Well Health which discusses this problem and lists many suggestions. You’ll also find some internal links to explore on related issues: Relationship Between Foul Language and Dementia
My personal go-to tactic is the one in this article called “Redirect and Distract”. Where my mom was concerned, I would say something like, “Are you hungry? Would you like me to fix you a sandwich?” My mom loved sandwiches, so I kept a little stash of halved sandwiches in the fridge.
Other times I would distract her with an activity. I’d just walk away from her angry outburst and grab her coloring books and colored pencils and begin coloring. Nine times out of ten, she’d join me in a few minutes.
Coloring cards Momma received in the mail each week from her friend (and ours) Suzy.
Another thing I did on many occasions was to grab my collection of buttons and pour them out onto a towel on the kitchen table. I’d just quietly start sorting the buttons into color groupings, or line them up in rows. Mom could not resist this little sorting activity. Before long, she’d be calm and would join me.
Sorting buttons was a favorite calm-down activity for my mom
I wrote about these two and several other activities in my post Dementia Friendly Activities. The key thing was for me to be quiet and resist the urge to argue or add defensive words. Talking during one of her outbursts would only add fuel to the war of words raging uncontrollably in her head.
My friend at work has a similar calm-down button: her sweet tooth. I can sometimes redirect her downward spiral by offering her a cookie.
Since I’m the baker, I’ll sometimes say, “I need your help. Could you taste test this for me?” My friend also likes a slice of buttered bread with a cup of milk. Paying attention to what she enjoys and asks for in her calmer moments equips me with ideas for dealing with the tense moments.
While I dread the thought of ever having Alzheimer’s, I do trust the Lord with my future knowing that He will provide what I need should this be in His plan for me. It is my prayer that the Lord will keep my tongue sweet and gracious, and that the “law of kindness” will always be on my tongue. (Proverbs 31:26)
Being a night-owl, it’s not often that I am up and at ’em early enough in the day to witness the beauty of a sunrise. If I do happen to awaken at that uncharacteristically early hour, I’m blessed to see the glow of early morning light streaming in our east-facing bedroom window. I have every intention of getting up and taking an early morning walk, but sleep usually wins out over my good intentions.
My hubby is always up at that hour, early morning person that he is. Once his eyes open from sleep, he can get up and start his day. In the quiet of the hours before I awaken, he enjoys a cup of coffee or tea while he reads his Bible, prays, and works on his computer on various writing projects and teaching responsibilities.
One morning, not so long ago, I awakened to the early morning sunlight streaming in my window. I could hear Wayne in the kitchen making a cup of coffee and washing the dishes left on the countertop the night before. I can usually fall asleep again when I awaken that early, but not on that morning, so I got up and headed downstairs to make my own cup of coffee. As I passed our gathering room, I noticed a photo that seemed to have a spotlight shining on it.
It was a favorite portrait of the two of us from a few years ago. I probably see it several times a day in passing, but on this morning, illuminated by the sunrise’s lovely rays, I stopped to appreciate it and pray a prayer of thanksgiving for one of God’s grace gifts in my life: my loving husband, Wayne.
This post was written for Five Minute Friday, a group of encouraging writers, with this week’s word: SUNRISE. Our weekly goal is to write for just five minutes, with no real editing or proofing. If you’d like to read other writers’ sunrise posts, click HERE.
Early on the morning of December 30, 2020 my phone pinged to alert me to a message. Picking up my phone from the nightstand, I saw this cheery message:
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.
A long over-due continuation of the story of my life-changing teaching trip to India.
More than a year has passed since my life-changing teaching trip to India. I promised to write about it when I returned, but have struggled with finding words to express the impact this trip and the people I served have had upon my life.
If you’d like to read the backstory about what led up to this decision to teach in India, please click the links for these posts: Willing and Enlarging My World.
Friends, you need to know, I didn’t just wake up one morning and decide I would accompany my husband on his next trip to India. The decision to accept the challenge of teaching conversational English as a member of the four person ministry team from our church was a process paved with many tears and much prayer. I do teach in our children’s ministries (AWANA and Sunday School) and an occasional women’s Bible study, but am not trained vocationally as an educator. This opportunity was way outside of my comfort zone. WAY outside. So far outside of my comfort zone that those who knew me best could see it. In fact, during one Sunday morning service, my pastor once asked the congregation to pray for me as I prepared to teach English in India, adding . . .
“You need only talk with Cindie for 5 minutes or less and you’ll see how much she is out of her comfort zone in preparing for her ministry in India.”
Pastor Jeremy Scott, Memorial Baptist Church, Verona, Wisconsin
My Pastor: seminary professor AND baby-whisperer
Hearing Pastor Jeremy say this made me cringe with a bit of embarrassment, but then smile and verbally acknowledge that I did indeed need the prayer support of my church family. The realization that I was giving off a vibe of anxiety and insecurity made me blush, but I knew he was right. While one part of me felt uncomfortable being in the prayer request spotlight, another part of me relished the thought of extra prayers going into my account.
I knew in my heart I needed Divine guidance in preparing for this mission. There was no formal training to take or standardized curriculum to use in this ministry. I traded texts and emails with Dawn, the dedicated woman who had begun this particular ESL program in India. One afternoon we spoke on the phone together and she gave me some good advice and a few tips, but no specifics as to what my focus should be on this trip. I was on my own to come up with a teaching plan and make it my own.
Actually, in my heart I knew I wasn’t really alone in preparing for this trip. God was answering prayer as opportunities for ESL preparation began falling into place.
I reserved a few books from the library which had been suggested by Dawn. I read each book cover-to-cover in an effort to come up with a workable plan.
Dawn suggested that I contact “Joey,” who would be taking a turn at teaching the class during the Spring session. Once Joey was home from his trip, he very willingly shared his insights with me, along with a PowerPoint of one of his lessons, which served to confirm that I was on the right track in preparations.
I spent time on Pinterest in search of English as a Second Language (ESL) “pins” and “boards” and came up with hundreds of good ideas. I created my own ESL board where I could “pin” those ideas for reference.
My Pinterest activity led me to a couple of ESL websites and introduced me to Jessica at Everyday ESL Language Resources. What a treasure trove of teaching resources – many of them free!
God helped me find a specific book which would help me brush up on my own grammar skills and greatly helped me in creating my own lesson plans. I told the story of that find here.
A lovely friend from church told me she had a little time to spare and offered to help me as I prepared. Wendy is one of those enviable people who exudes creativity in everything she sets her mind to, so I asked her to help me think of a fun “warm-up game” or “review game” I could play with the adults. She took that idea and ran with it. I will share more details about that in a future post.
I thought it would be beneficial to observe an ESL class in action, but local classes were winding down for the summer months. I mentioned that fact to my workout instructor at the gym and she got me in touch with a good friend of hers who co-teaches a kindergarten class of English/Spanish immersion. I was warmly invited to observe their class in action. Teaching adults would be a different ballgame, but would utilize similar game plans in a class setting where two or more languages are in play.
As I write this from the comfort of my own home well on the other side of my trip to India, I can honestly say that the greatest preparation for this trip was found in prayer.
Prayer for the lessons I was creating was often on my heart.
Prayer as I brushed up on my own understanding of grammar and punctuation.
Prayer as I created visuals and PowerPoint presentations (and back up plans for possible power failure).
Prayers for my husband and Pastor Jeremy as they prepared lessons on the seminary level.
Prayer for Don, another member of our team (also an India newbie) as he prepared daily devotionals.
Prayers for the students who I was soon to meet and come to love as family
Prayers for the ministry team scheduled to arrive just as we’re leaving to continue the teaching ministry.
Prayers of praise and thanksgiving to God for this amazing opportunity to help them prepare for ministry opportunities in their corner of the world.
Fall 2019
Ten days spent with these men and women of faith opened my eyes to the wisdom in strategic seminary level training of national believers – equipping them to teach, preach and share the Gospel in their own communities. This trip informed my prayers for this incredible group of men and women who sacrifice so very much in order to prepare for ministry opportunities in their corner of the world. God used this trip to open my eyes to a world that is bigger than I could possibly imagine – a world that needs Jesus.
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.
Hubby asked me earlier this year if I wanted to travel with him to India where he and two other men from our church will be serving in a teaching capacity (I wrote a little more about that in Enlarging My World). I don’t think I answered right away, as I had just placed my mother in assisted living memory care. But there was definitely a tug of willingness and a sincere longing in my heart to travel with him and see firsthand this ministry.
After prayer about the ‘what-if’s’ related to mom’s care while I’m away, I decided to go. God had put the willingness in my heart. Momma was, is, and will always be in God’s very capable hands.
As soon as I said yes, I learned there was a job for me to do. I would be teaching English as a Second Language (ESL). I’ve been busy preparing for that ministry from the moment I learned what my responsibilities would be. There’s a passport to be obtained (check!), immunizations to be received (done!), shopping for appropriate clothing (dragging my feet on that one), and reading nearly every library book I can get my hands on related to ESL. Most days you’ll find me listening to experienced ESL teachers share their teaching tips on YouTube.
Even with this preparation, I have felt for a few weeks now like I’m spinning my wheels. My foot is on the gas, but I’m getting nowhere, and digging myself into a rut of negative thinking. When I find a great idea and try to incorporate it into a lesson plan, ten reasons why it won’t work pop up in my mind.
I have five lessons to teach while I’m there. Five hours to give the students a better grasp of conversational English. Five lessons and five hours — that’s all. I want to make them count.
I’m finding myself melting into a puddle of anxiousness as I wrestle with what to say, what to teach, and how to do this thing I’ve never done before. This wrestling match has driven me to spend more time praying about this ministry opportunity. I know that all of my willingness and preparation in the world won’t matter one iota if the plans that I’m making are my plans alone. I have been reminded once again that my heart must be willing to seek and rely upon the Lord’s wisdom and guidance.
Here I am, Lord. Please take my willingness to serve You and guide my steps of preparation in the way I should go. Direct my paths to the resources that will be helpful. Shield my heart and mind from that which discourages. Keep my mind focused on what you want me to teach. Your will, not mine.
Interesting how, once I released my tight grip on what and how to teach this class, the Lord directed my steps by allowing me to find the teacher’s edition of the English Grammar and Composition book I had loved using when I home-schooled my daughter eons ago. I thought the book was long since given away, but the Lord knew it was going to be helpful in the future.
Although I’m a little late to thelink up, this post is inspired by the writing community at Five Minute Friday. Each participant writes for just 5 minutes on a one-word prompt – last week’s prompt being “willing.”
My world has been relatively small the past few years, staying pretty close to home. Life has revolved very much around taking care of my mother as she battles Alzheimer’s. Over the years, I found myself growing weary and having to stop doing several things I love in order to be able to focus on her ever-increasing needs.
In late March, my sweet momma took up residence in a beautiful assisted living facility devoted to those with memory care needs. I still spend a few hours each day with her, but I can sleep throughout the WHOLE night in my own bed and am no longer fully responsible for her daily care. I’m beginning to feel more rested and able to resume some (but not all) of my former activities and ministries. I can take a little road-trip with my hubby, play in the dirt in my garden, or prepare a Sunday School lesson for the kids at church without interruption. It’s truly a blessing from God’s gracious hand.
With this new freedom, my world will enlarge even more in September when I accompany three of the men from our church (including my hubby) on a teaching trip to India. My responsibility during this trip will be to teach English as a Second Language (ESL) to the students who will be gathering for the purpose of enjoying some seminary-level training. I have never taught ESL, so this will be a huge stretch for me – something which will also enlarge my world as I help this group of adults whose first language is Hindi in their continued quest to become more fluent in their conversational English.
This is my hubby Wayne’s second trip to India (he’s the handsome, white-bearded guy on the lower left of the group photo above), as he traveled with our pastor and another friend on a teaching trip last year. This fall’s trip is a giant leap for me, as I’ve never been out of the country. [Well, unless you count the time when my hubby and I were honeymooning 43 years ago in a rented recreational vehicle and we drove over the Canadian border in the days before a passport was required.] This trip to India will be my first trip overseas, passport, visa, shots, long international flight, and all the cultural adventure that will surely come with that experience.
In the meanwhile, I will need much prayer support as I prepare for my role as a teacher on the other side of the world.
This post is written for the Five Minute Friday Writing Community. Please come join us! https://fiveminutefriday.com/
Barefoot Lily Lady 