Sometimes I wrestle with whether or not I should write about something related to caring for a loved one with dementia. Some things just feel too private, too personal. In writing about an especially sensitive topic, I wonder if I will dishonor my mother in some way. I’ve wrestled earnestly with today’s topic for these reasons and more. However, as I speak with others who are caring for a loved one suffering from memory loss, many of them are dealing with the same thing. So, for the sake of those who need to know they’re not alone, here’s the topic:
As Mom’s battle with Alzheimer’s dementia intensifies, so does the bad language and harshness of the tongue. Those who help provide her care each day assure me she is still incredibly sweet – they love, love, LOVE her to pieces. They tell me that when her tongue gets sharp, she almost immediately apologizes and layers on the salve of kindness.
Before Alzheimer’s, Momma would never swear at someone. In a moment of frustration, she may think a curse word in response to a frustrating situation, but she would never say it out loud. She would quickly reign in her frustration and replace it with graciousness.
With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken. With arms flailing, out come the curse words when her caregiver tries (sometimes in vain) to help her shower or get dressed. She’ll even blurt out curse words at me, the one who provides daily love and care for her.
It hurts my heart to hear her swear and say ugly, mean-spirited things.
Before Alzheimer’s Momma’s tongue held kind words, not critical and harsh ones. Her tongue reflected her actions and her love for her Savior; she was gracious and benevolent with both. She’d never blurt out what she thinks. She’d just smile and keep her thoughts to herself.
I know it’s the result of this disease. But, I also see very clearly that the curse of the sinful nature we are all born with is uncovered and revealed by this relentless and wicked disease. I know in my heart how much my mother loves Jesus. And I know how immersed she was in the Scriptures and what a prayer warrior she was before this disease stripped her mind of the ability to recall the things she has learned.
I always hoped that she would defy the odds of this disease and never forget the Scriptures she has learned. But now, it seems, she cannot understand what she is reading and tells me that the Bible I keep on her nightstand isn’t hers, even though it is filled with her own handwritten notes, prayers and thoughts.
I always hoped that music and the great hymns of the faith would be a help and stronghold for her in her later years. But she is usually quite ambivalent to it – although her poor hearing might play a role in that.
I always hoped she wouldn’t forget that she is a child of the King. On this last unfulfilled hope – she has forgotten, but God has not. She is His child and He knows it. He remembers her and will never forget – never forsake.
Someday, when all is made new, music will be restored and she will sing a new song in heaven. Best of all, she will meet the One she read about in Scriptures and has trusted by faith – Jesus – the living Word.
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.
The Wheatless Experiment continues in earnest in Fitchburg. Almost a month has gone by now, with only a few accidental slips (and one purposeful taste). I have kind of hit my stride, finding it easy enough to stick with my plan and say “no” to temptation.
The best news is that I can still honestly report that the arthritis-type pain in my hips, legs, knees and thumb joints is gone. I do still have a persistent clicking in my left knee (which I’ve had since I was a teen), but no more ache-til-you-wanna-cry pain.
I thank God for this result. Really. I can’t thank Him enough for helping me make this discovery about one major source of inflammation for my body.
And I’m thankful for the various cooks who’ve posted wheat-free recipes on Pinterest, where I’ve been gathering “pins” in search of good substitute recipes for some of our favorite things that we enjoy at Thanksgiving. Pumpkin pie, in particular. I’ve got my first experimental crustless pumpkin pie in the oven right now. Here’s the recipe I gleaned from Amee on her blog called “Inspired Housewife.” Click here for the recipe (including a tutorial video).
Only one change: I substituted 1/4 c pure maple syrup for half of the raw honey. I used evaporated milk for the cup of milk called for in the recipe.
So, here it is, cooling on the counter. I plan to serve it chilled with some sweetened whipped cream tomorrow evening to those attending our small group Bible study.
Now for the hard part…keeping hubby out of it until then.
I recently figured out how to use Libby – an app that allows me to borrow audible books from the library. (I know, I’m late to the party…but I made it!) I spend a fair amount of time sitting with Momma when she needs company, but doesn’t necessarily want to talk, so I’ve begun listening to books. It has been a great way for me to keep my brain stimulated, to learn new things, and to find enjoyment when doing solitary things like gardening, sewing, or household cleaning.
Today, I thought I’d share my review of two books I read earlier this month: “Wheat Belly” by William Davis, MD, and “Grain Brain” by David Perlmutter, MD. I picked these two off the virtual library shelf because I’m interested in learning more about how today’s genetically modified wheat purportedly contributes to inflammation in our bodies. I’ve been having a great deal of arthritic-type pain in my hands (and swelling to the point where I can no longer wear my wedding rings). The pain in my legs (especially my knees) makes me feel like a little old lady, limping and gimping along. And don’t get me started about how much my hips hurt. If something doesn’t change, I’ll be using a cane (or a walker) very soon.
Truth be told, the scariest problem I’ve been noticing lately is foggy thinking. I have noticed great difficulty in my ability to concentrate on reading or writing. Staying focused on a task was becoming noticeably harder. This scares me. Given my family history of Alzheimer’s, it scares me a LOT.
I have read that inflammation is at the root of many physical ailments. Research has suggested it is involved in diabetes, arthritis and even Alzheimer’s. I was already aware that over-consumption of sugar was involved in so many inflammatory health conditions. Could there be something to this premise that the consumption of wheat also contributes to inflammation?
I listened to “Wheat Belly” first. I actually listened to it twice because there was so much to absorb in this book. I read “Grain Brain” because Dr. Davis referenced it in his book. After ingesting the information they both provided, I concluded that what they were suggesting was worth an experiment in my own diet. I decided to cut wheat out from my diet for a period of one month and see what happens.
I changed my morning breakfast ritual. I stopped eating my slice of whole-grain toast with peanut butter and jelly each morning. Instead, I substituted a smoothie which I made with spinach, frozen berries, and a bit of protein powder.
I stopped eating the “protein meal replacement bar” I had been consuming almost every day at lunch. I started making myself a salad with a bit of protein in the form of chicken, tuna or an egg, and a small handful of raw walnuts for a dose of healthy fat.
I made a habit of saying “no thank you” when offered the complimentary bread basket at our favorite neighborhood restaurant. If I ordered a sandwich, I’d ask for a lettuce wrap or ask them to omit the bun. At the local pizza buffet, I would eat a slightly larger salad, then choose one piece of chicken and one piece of pizza – removing the skin on the chicken and eating only the delicious toppings on the pizza.
I began scrutinizing the ingredients listed on food labels, looking for wheat (in all its forms). Check out this article for a good list of what to look for on labels. I went through my pantry and quarantined anything with wheat.
I’m being careful not to eat gluten-free this and that’s just because they are gluten-free. I could literally pig-out on the GF donuts, breads, cakes, pancakes, cereals, muffins, bagels, protein bars, pizzas, desserts, and myriad treats that are available in my grocer’s specially dedicated aisle. To do so would spell over-indulgence and certain disaster in any efforts of mine to lose weight and thus reduce the load on my old knees.
So, you ask, “How’d it go?” Well, I’m glad you asked! I must report that I began noticing subtle changes in how I felt within a few days. My legs were less achy and the puffiness around my knees seemed diminished. I wondered if it was working, or just a fluke…or a figment of my imagination. Now that three weeks have passed, I don’t think those changes are placebo. I think they’re very real and significant.
I have more energy and ability to focus on tasks.
My fuzzy brain has cleared up significantly. I’ve even begun blogging again.
My headaches have disappeared.
I wish I had measured my knees at the start, but I can tell you that the puffiness has gone WAY down.
My left knee still clicks, but my legs and knees don’t hurt. I can walk and use stairs without pain. This is a very significant and welcome change because, quite honestly, they hurt to the point of tears.
The excruciating pain that I experienced when getting in or out of a car is gone. Not just better. Gone.
It literally hurt to pick up my coffee cup. I had to use two hands, or risk dropping my mug. I am encouraged to note that I can move my thumbs and grasp a coffee mug without pain again.
Interestingly enough, I can zip the jeans that were hard to zip, and less of me seems to be spilling out over the top of those jeans.
While I have had some good results and undeniably dramatic reduction in the pain I believe to be associated with inflammation, I’m not totally convinced that “radical wheatectomy,” as Dr. Davis calls it, is right for everyone. In fact, he purports that all grains are suspect in the inflammatory process and should be eliminated. There are plenty of articles out there (written by physicians) which warn that this diet is not healthy. Here’s a link to just one of many that are worth consideration. This particular author believes that the Wheat Belly/Grain Brain diet is just a backdoor approach to the old Atkins Diet.
So, here’s my conclusion: It is my personal theory that it is the over-consumption of carbs in the form of grains that is primarily suspect. Once I began taking a closer look at food ingredient labels, it was clear to see that wheat is hidden in SO many foods. Add that to all the breads we knowingly eat, we very unintentionally over-consume wheat and stress out our bodies. Another consideration – when I deliberately cut out wheat, I also dramatically reduced my sugar consumption, and a host of unpronounceable chemicals and additives found in the food I eliminated. Definitely not a bad thing.
So, what am I going to do with this information? For now, because my body is feeling better, I will continue my wheat-free diet to give my body a chance to heal. Somewhere down the road, I will likely reintroduce wheat – in moderation, of course – to see how my body will respond.
The simple blessing of being able to attend my sweet granddaughter’s symphonic band concert on Wednesday night was not lost on me. My husband and I could both go to the concert. Together. We didn’t have to take turns going to these special events anymore. We didn’t have to hire a caregiver or ask a friend or family member to come spend a few hours with my mom. We could just go.
As we waited for the concert to begin, I looked down our row of seats in the high school auditorium and was caught up in a beautiful moment of realizing I was sitting here with my daughter and her family. I could sit next to grandson Charlie and give his back a scratch while we waited for the concert to begin. I could ask him during the concert what his favorite instrument was – percussion, if you’re wondering too. During the concert, I watched Henry, seated at the end of our row, totally taking in the music. I remember comparing Henry’s silhouette with that of his mother seated next to him – how fun to notice the similarities in their facial features. It made me smile. Even sitting next to wiggly George and helping him cover his ears during the loud or “scary” parts of the music was a special blessing to my grandma-heart.
Our flautist. (Such a strange word.) How fun to see Violet seated next to Izzy, her friend since kindergarten.
Of course, I relished watching Violet play her flute. When did she grow up to be such a poised and beautiful young lady? The obvious enjoyment she had in making music with her friends just thrilled my heart. The music was amazing – I could not believe this band had been practicing together for only two months.
Being able to attend this concert was a grace gift – a hidden blessing of having my sweet mom in memory care. My heart was reminded that I need not regret our decision to place mom in assisted living memory care earlier this year – it was an act of love – for her, for me, and for my family.
is something special about climbing trees. When I was little, I liked climbing
trees and even built a tree house as a teen. Our son was also a tree climber.
He scared his mom with his tall tree adventures. And our granddaughter Violet
liked to climb trees and was especially fond of climbing our leaning crabapple
tree even before she was tall enough to do it safely. I added a rope to the
tree so that she could pull herself up on her own.
climbing seems normal for children, but when adults do it (if they aren’t tree
surgeons or tree trimmers) it can be peculiar or even questionable behavior.
But sometimes you must climb to accomplish a task. If you are lost or in
danger, climbing a tree might give you a vantage point to see something you might not otherwise see on the ground or allow…
A few summers ago – 2015, I think – I was sitting on the ground pulling weeds from my front flowerbed when a sweet kitty crawled into my lap. Kitty had me from its first contented purr as I pet his head in response to his gentle head-butting insistence.
The next day, kitty showed up again while I was sitting on the porch glider taking a rest from puttering around in the garden. He hopped up on the glider and then crawled into my lap, kneaded my gardening apron, then did that circular little dance kitties do when they’re about to claim their favorite sleep spot.
I remember thinking, “I think this kitty just chose me as his person.”
One morning I woke up and saw kitty sleeping on the glider. That didn’t look very cozy to me, so I put a folded blanket on the glider for him. Later, I opened the front door to go sit with kitty and noticed that kitty had left a little present on our welcome mat. It was small, furry, and had a tail…but didn’t have a head anymore. It was obvious kitty had chosen us as his family, and had given us the gift of his leftover prey as a token of his devotion. He would continue to give us similar presents several times a week.
Wayne fell for the benevolent kitty too and began leaving food for it on our porch. People food and kitty food weren’t his favorites; Kitty much preferred his food…ummm, fresh.
Now Wayne had a very devoted fur-buddy, who literally followed him everywhere in the yard. Unfortunately, Wayne is very allergic to cats, so we couldn’t bring this stray kitty into our home. Kitty didn’t care – in fact, he seemed to prefer romping around in the great outdoors. He just kept showing up on our front porch, peeking in the front window meowing at us to come out and pet him.
The neighborhood scuttlebutt was that this stray cat had once belonged to a nearby neighbor on the street behind us. Word had it that they moved back to India to be closer to family and left kitty behind.
We named our new porch kitty Smokey because his pretty gray fur had little white stripes that resembled little whisps of smoke. We sometimes called him a “her” because we didn’t REALLY know. If you read my Facebook posts about the cat over the past four years, you’ll see I bounced back and forth calling it a he or she, him or her, and spelling its name “Smokie” or “Smoky,” or “Smokey.” The cat never seemed to mind my indecisiveness, but our veterinarian friend later confirmed it was a neutered male, based on what he didn’t see…and because he had a broader face and deeper ‘meow’ more typical of male cats.
Our family got in on the kitty lovin’ too. Our daughter gave us a rabbit hutch she was no longer using. Wayne painted it the same color as our front door. It fit perfectly in a sheltered corner of the front porch right by the front door. I filled it with old towels and blankets and our Smokey moved right in.
I stopped at Goodwill and bought the kitty a little divided food dish. But, the next thing we knew, we were buying things on Amazon for the cat. Food, of course, as he had now been won over to having most of his meals coming out of a bag. Since he would be an outdoor kitty, a heated pad to keep him warm in his little house during Wisconsin’s nippy winter weather was next. Of course, he also needed a heated water bowl too. And a brush.
Some people have a dog to greet guests at the front door. Not us. Our kitty startled many a guest by popping out of his house as they rang our doorbell. Our mailman LOVED our porch kitty and lavished lots of attention on him whenever he’d deliver a package. The grandkids loved to sit on the glider and brush or pet him. He even kept my sweet momma company when she’d occasionally sit with him on the glider and brush him, or talk with him through her bedroom window.
This past week, we noticed that Smokey didn’t eat his breakfast. No worries. His appetite has grown smaller as he has grown older – and he still sometimes prefers to catch a fresh meal once in awhile. Wayne went out to fill his dish at suppertime and found that his breakfast still hadn’t been touched. Now, that was a bit odd. Come to think of it, Smokey hadn’t been hanging out in his little home all day. I took some clean blankets and towels (fresh from the dryer) out to his house. Smokey usually comes running when I change his bedding and will hardly let me get the new bedding situated in his cozy house before he crawls in and makes himself at home.
He didn’t come. In fact, he didn’t come home all weekend. He’s still not home. Sadly, we know in our hearts he isn’t coming home again.
So, goodbye sweet Smokey kitty. We hope you found a nice cozy spot to lay down for your final sleep. We miss you already. We loved being your family. Thank you for choosing us.
Some of the signs of advancing memory loss can be seen most easily when viewed in retrospect.
Several years ago, when mom was still living in her own home in Milwaukee, I noticed that she wasn’t making it to her weekly “lunch bunch” restaurant gathering with a few friends. If I’d ask her about it, she would have a plausible reason. It wasn’t until I stumbled upon an envelope where she had written down the names of her friends in this group that I began to understand. Mom was in an earlier stage of memory loss – a very difficult stage where she knew her memory was failing. In this stage, mom had many strategies in place to help her remember things, including creating little “cheat sheets” for herself. One can only imagine her angst in forgetting the names of her good friends. As I looked at the envelope, I could see that, as the names came to mind, she would write them down – over and over again, as if willing herself not to forget.
Looking back now, I think it was just easier on her ego and heart to just stop going. My heart was sad when she stopped having lunch with her sweet friends…and even sadder when she stopped going to church altogether.
Looking back in the rear-view mirror of life, I can now clearly see that pulling away from the friends she loved was one of the huge signs of her advancing Alzheimer’s. As much as she loved these ladies, she can no longer remember their names – even with prompting. But I remember and am thanking God for these ladies. May I be the kind of friend to someone else that you were to my sweet mother.
I’ve been having a bit of trouble sleeping lately. I fall asleep just fine, then awaken about an hour later and have trouble getting back to sleep. Last night was one of those nights. Stumbling upon this blog post from a year ago served as a reminder that I am blessed to not have to juggle my occasional sleepless nights with Momma’s frequent all-nighters without sleep. I am so blessed that she is safely in the care of the wonderful staff at BeeHive. What a blessing.
I know now that I should have responded to the video monitor’s prompting much sooner. Perhaps I would have been able to get more sleep if I had gone to Mom’s mental rescue sooner. It was after midnight, and Momma was having yet another bad night struggling with sundowning. I watched and listened in on the monitor as she yanked the chain on her bedside lamp and sat up in bed talking to herself. Nothing new; the same questions she always asks – those questions that never go away, even with an answer. I heard the familiar “zip” of her purse as she went through the contents of her purse over and over again. Between each examination of the contents, she would carefully hide the purse beneath her bed sheets. Then, in delighted surprise moments later, “find” the purse and go through the…
What a blessing to receive a little ‘hello’ in the mail. I know I’ve told you about my friend Suzy who sends a beautiful handmade card each week. At first her cards were addressed to my mom (but always meant a lot to me too). About the time Momma moved to BeeHive, Alzheimer’s began to chip away at her ability to read and appreciate her mail. Suzy asked if she should discontinue sending the cards. I hesitated in answering because I loved them so much. The very next week, Suzy began addressing those encouraging notes to me. Each note always brightens my day, but this particular note was extra-special. Suzy chose to inscribe an encouraging quote from one of my favorite authors:
Life is hard.
God is good.
Glory is coming.
Therefore, stand firm in His grace.
It is amazing to observe how many times my friend’s weekly ministry of written encouragement and exhortation “just happens to be” exactly what I need on the day I receive the mail and zip open the envelope.
The day I received this ‘hello’ included several personal challenges for me and even harder physical challenges for Momma. God, in his goodness, allowed me to better understand just how hard life is for my sweet mother, and how incredibly blessed she is to be in a place where she is so loved and so cared for. I could definitely see His goodness in the midst of this hard day.