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.
Today I complete another trip around the sun. Most people get a little forgetful as they age – you know, the searching for the glasses perched on top of the head sort of thing. As I now approach the middle of my sixth decade of life, I am keenly aware that I am spending a tad bit more time looking for mislaid things, and much more time trying to figure out the names of people whose names I should remember. My sweet mom had Alzheimer’s in her later years of life, so I will confess that my own little forgetful moments cause me to think about what may be down the road for me. I suspect the day is coming when my memory will fade, and perhaps gradually vanish.
I write this post for any of my readers who are faced with loving and caring for someone they love who has heard their physician say “Alzheimer’s” when delivering a diagnosis. My dear family, I especially write these words to help you in the event that I someday hear my doctor say that dreaded word, or any other diagnosis which spells memory loss and dementia. You will likely need to make many hard decisions on my behalf – like taking away my car keys and deciding when it is time for me to live somewhere else. You were there when I made those difficult decisions on behalf of my mom and likely remember how hard that was for me. Take heart, God will give you wisdom for each decision and shed light on every step you need to take.
If I get Alzheimer’s, don’t ask me to remember; instead, reminisce and tell me stories from our past. What do you remember that we did together? Tell it again and again to me.
If I get Alzheimer’s, and I perchance do tell you a story from my past (or yours), you might want to write it down or record the story I’m telling you. I may tell you that story over and over and over again, just like your grandma did. Do you remember her talking about how she made her blue flower pots when she was in West Virginia, or how she dug the purple tablecloths out of the trash, or the stories about her wedding day? Just remember that the day will come when I will tell my story for the very last time and you will one day wish you could hear me tell it once again.
If I get Alzheimer’s, I might stubbornly refuse to bathe. The fear of bathing is the sad and stinky reality of this horrible disease. There might be a lot of fussing and crying, so let me tell you right now that when this time comes, you might find that hiring someone to help a for a few hours a day or two a week will be just the thing.
Tip: You might also find that dryer-warmed towels, blankets and clothes will calm my anxiousness. If all else fails, those disposable washcloths you can warm in the microwave are wonderful.
If I tell you I am cold, more than likely I truly am cold. In Alzheimer’s, the part of the brain which regulates body temperature and thyroid function goes kerflooey. Rather than subject yourself to turning up the furnace year-round, when you help me get dressed, start with a soft sweatshirt, then add lighter layers and keep soft blankets and throws handy.
If I get Alzheimer’s, I probably won’t remember to brush my hair. Will you please do it for me? Please use a detangling spray when you brush my mane of hair. I use a detangling brush, working from the ends and then all the way up to gently coax the tangles out. I like my hair long, but cut it short if you must. I might be mad at first, but will likely soon forget what once was.
By the way, if I tell you my hair hurts, I am not confabulating or telling a fib. When my hair gets dirty, my scalp truly hurts. It feels like bruises on my scalp, so please try to keep my hair clean. Perhaps a weekly trip to the hair salon for just a wash will be just the thing.
If I get Alzheimer’s, it might be challenging to keep me occupied, so here are some ideas for you to try. Gardening is my happy place, even if it’s just my own blue pot or three, encourage me to play in the dirt as much as I possibly can.
Donning Momma’s Gardening Hat
I also really love to work on puzzles, and might enjoy working on one with you.
Oh, and I like crafts. I once helped my grandkids create things with beads and paint; maybe, in time, it’ll be their turn to help me.
Baking was a joy to me when my mind was clear, so I might enjoy helping you in the kitchen. Even though I am old, remember that my mind is becoming child-like. What can a child do to help? Perhaps I can stir the batter, whisk the eggs, or pour in the bag of chocolate chips.
I could set the table, dry the dishes and wipe off the countertop. It won’t be perfect, but I will feel like I have made a contribution. It’s very important to feel useful.
If I get Alzheimer’s, remember that I’m a blue-jean wearing momma who likes pretty knit tops – ones with interesting details like ruffles on the sleeves and pretty buttons and lace. When you buy clothing for me, I suggest you buy two of each of my favorites. This will help you cope with me when I insist on wearing the same shirt over and over again. Unless you’re handy with a sewing machine, you might even want to buy two in the next size down, as those with Alzheimer’s lose interest in food as time goes on.
Perhaps you have noticed that I practically live in an apron. I wear one in the kitchen, while I’m cleaning, or when I’m gardening. If I get Alzheimer’s and the day comes when I become ‘messy momma’ at meals and perhaps need a bib, you might spare my dignity and try an apron instead. If I need to graduate to a bib, please make me some pretty ones…with lots of flowers.
If you can’t get me out of my pajamas in the morning and I stubbornly refuse to get dressed, just put on your pajamas and declare it “Pajama Day”! Conversely, if at day’s end I refuse to put on my pajamas, please remember that there’s no harm in wearing my clothes to bed. Unless the clothing is soiled, it truly isn’t worth the battle.
Dear family of mine, you know that I love the Lord with all of my heart and go to church every Sunday. If it is within God’s providential plan that I get Alzheimer’s, may I ask you to please take me with you to church for as long as I am able? It will do my heart good to gather and worship with my family and friends. One day you may find that I fidget too much or speak out of turn, then you will know it’s time for me to stay home with a caregiver while you go praise and worship our Lord, fellowship with your friends, and feed your soul. I’m God’s child and He will be near, whether I’m at church or at home, so don’t feel as though you are leaving me alone.
If I get Alzheimer’s, help me stay in touch with friends, be they old or new. I loved to have family and friends come for dinner. Much like your grandma did, I would probably enjoy company, but may get overwhelmed with crowds, so make it just a few. They may not understand what is happening to me, so gently explain before they come.
Remember how I used to take a photo of your grandma with her guests (or snag one off of Facebook), then give her the card to hang onto when her guests arrived. I would add their names and how she knew the people, then laminate the cards. It helped her remember their names. Maybe it would help me too.
If I get Alzheimer’s, please get me outside as often as you can. I always enjoyed walks in the park, so you might try that again. Push me in a wheelchair if you must, but let me enjoy nature and a bit of fresh air for as long as I’m able (and willing).
If I get Alzheimer’s, one day, you may find, I’m terribly unwilling to leave the house where I live. Going outside may become a terror, rather than a joy. If that day comes, try to create a comfy spot where I can sit near a window and enjoy the beauty of flowers and trees planted nearby, or a grandchild-painted birdhouse within view where a sparrow family might keep me occupied with their comings and goings.
Mom’s Little Patio Garden
Momma happily engaged in coloring
If I get Alzheimer’s, you might like to know that I love to listen to music and would enjoy Christian radio. But if I’m anxious, you might find instrumental piano or guitar will help me to relax. I especially enjoy listening to great hymns of the faith. You’ll find what I enjoy on my Spotify and Amazon Prime music collection.
If I get Alzheimer’s, please remember my children and grandchildren are especially dear and I hope they will visit when they are near. If they can’t come to love on me, please tell them to send me cards and sometimes include a photo for me to treasure.
If I get Alzheimer’s, I might like to carry a purse even though I don’t carry one now. When memories no longer stay tucked away in my mind, a purse might give me a handy storage space where I can pull out special memories any time I like. You might want to tuck a few of my treasures inside: little photo books filled with family (be sure to label who is who), something to color and an array of colored pencils, little books of flowers and butterflies to help me enjoy the things God made. Oh, and finding milk chocolate or a cookie in my purse would be especially nice.
If I get Alzheimer’s, the day may come when watching television is my thing. I really enjoy mysteries, but nothing super scary. Put on a gardening show or gentle children’s programming and I think I’d be content. I don’t like to watch television alone, so would you occasionally sit with me?
One more very important reminder. If I get Alzheimer’s and ever forget your name, please know that my heart still loves you and someday (sooner than you realize), the day will come when God will take me Home and make all things new, including my memory of how special you are and how very much I love you.
It’s a glorious September morning here in Wisconsin, with just a hint of autumn in the air. Entirely too gorgeous to be spending it indoors.
It would be a great day to take a walk in the park or perhaps get a little gardening done in the cool of the morning. I definitely have a mile-long to-do list of gardening tasks I could be doing outside on this day off of work. Alas, my all too often used excuse ofI will do it laterpushed the thought of outdoor activities out of my mind, so I nestled into my comfy chair and opened my laptop to begin working on a PowerPoint presentation for this week’s Sunday School lesson. Just as I got started, my phone rang.
“Hi, Cindie! This is Rita. I’m over at McKee park. What are you doing right now? Would you like to join me for a walk?”
To which I countered, “I’m just sitting on my duff in my comfy chair. I’ll put on my shoes and meet you there in a few minutes.”
Rita (a friend I met through our Fitchburg Garden Club) and I enjoyed talking about what has been going on in our respective worlds (and gardening, of course) and did a little meandering through and around the park. A walk in what I call “my happy place” turned out to be just the thing my heart and body needed today.
Our homes practically bookend the park – mine to the northwest and hers to the southeast, so we ended our walk by wandering through her garden together. September gardens are definitely fading in their summer glory, but we gardeners have the eyes to see the beauty that was and that which will be in the ebbing vestige of floral splendor. Even in its autumnal decline, I can see how my friend designed her garden spaces by layering trees, bushes, perennials and annuals to create a truly magnificent piece of paradise on earth.
Thanks, Rita! I’m so thankful you rescued me from my sedentary morning with just a phone call and an invitation to take an impromptu walk in the park.
Today I am joining the encouraging writing community over at Five Minute Friday for their weekly link-up. This week our common theme is Rescue.
I am truly blessed by God’s gift of being able to bake for my friends. While they will likely never recover from their illnesses and memory loss (on this side of Glory), I hope that my desserts and treats will help them recover a special lost memory of a yesterday and bring a little splash of momentary joy to their day.
I am blessed to spend three mornings every week baking for my friends. Each of these dear ones lives at BeeHive Assisted Living and Memory Care home due to some type of memory loss.
I am blessed to see my friends smile and wave at me as I measure my ingredients into my big mixing bowl. I love hearing the buzz as they talk amongst themselves about what I’m doing — guessing what will come out of the oven.
I am blessed to hear the ladies reminisce about how they used to bake for their families, or how their mom used to make what I am baking for them.
I am blessed when the aroma of something sweet baking in the oven wafts through the building and a dear one stops by the kitchen to ask, “What are we baking today?”
I am blessed when one gentleman scoots his wheelchair through the door and sits in the kitchen chatting in a language I cannot speak. My friend doesn’t eat sugary treats, but he likes to keep me company and watch me bake for awhile, then nods off in a little middle-of-the doorway nap. I hope his dreams are sweet.
I am blessed when one special lady-friend giggles and says (several times a day), “Since you started baking here, it’s getting hard for me to button my pants!” Just the smell of something baking in the oven has a way of making my friends smile and helps them anticipate their next meal.
I am blessed when I serve another friend her dessert before her meal – allowing her to start her meal with dessert means she will likely keep eating the rest of her meal. Her dainty little smile on her face as she savors her dessert blesses me.
I am blessed when I am able to take a little break from my baking to help one of my friends find her room (or her purse, or her keys). This friend is special to me because she shares my mom’s first name and reminds me of her in so many ways. I love it when this tiny little lady takes my hand in hers and draws it to her lips for a little kiss and says, “I will never forget your kindness.”
This post is part of the Five Minute Friday blog link-up where I join up with Kate Motaung and a community of writers and bloggers of all ages and stages who gather on Fridays around a single word prompt to free-write for five minutes. Kate’s word prompt for this week is {recover}.
We’ve been in rainy Louisiana this week enjoying more than “raindrops on roses,” but also enjoying whiskers on kittens (four cats) and the playful antics of three dogs (sometimes five) in the home of our friends and gracious hosts, Don and Melinda. Our little vacation started out sunny and beautiful, but most of the week has been more than a little wet…
yet still beautiful, as these photos of Melinda’s garden will prove.
A beautiful ‘Porch Begonia’ (aka: Angel Wing begonia)Raindrops on rosesA gorgeous orchid bloomed on the last day of our vacation
The rain hasn’t dampened our quiet fellowship. Together we have enjoyed Melinda’s amazing cooking (she truly loves to cook), a never-ending tea-time, the challenge of putting together two 1,000-piece puzzles, or our time spent binge-watching episodes of British tv’s “Pie in the Sky” and “Rosemary and Thyme” trying to see who can figure out whodunit before the detectives. Oh, and I must not forget the menagerie of critters!
As wonderful as every single minute of our vacation was, it was nice to pull up into our driveway tonight and be welcomed by lovely daffodils and tulips.
Our lovely “welcome home”
Thank you to Jon the Propagator for hosting this fun, around-the-world garden tour each week.
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:
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.
Barefoot Lily Lady 