Before I Forget: Sharing my love for God, family, gardens and my sweet Momma
I love sharing about my barefoot gardening adventures, hence my blogger name. As I write, some of my other passions might spill out -- like fun with grandkids, baking and sewing endeavors, what I'm studying in Scripture, and the like. My readers will notice that one of the primary things I write about is Alzheimer's. May what I write be an encouragement to anyone who is a caregiver for someone they love with memory loss.
How do you say ‘goodbye’ to a loved one with Alzheimer’s? I’m not talking about the final goodbye at this moment, but the daily goodbyes when you have to leave your loved one.
I usually spend a few hours with my mom each day. She really doesn’t like to see me leave and, much like it may have been when I was a toddler and she left me with a babysitter, she can get a bit sulky and fussy. I’m discovering there is an art to making those daily goodbyes a little less stressful.
The number one thing I have learned is never say, “I have to go home now.” Saying the word “home” is an involuntary trigger for her to feel unsettled, as she constantly wants to “go home” too.
I have discovered that it’s really important to give her a reassuring hug and tell her that I love her, but sometimes that’s not enough. Here are a few other tactics which help make daily goodbyes less stressful for my mom:
I don’t mention how long I’m going to be gone. Instead of “I’ll see you tomorrow,” I say, “I’ll see you a little later.” Even if I’m going to be gone for a few days, it’s really important to offer her the hope that I will be back soon.
If she asks where I’m going, I sometimes say, “I’m going to work, but I’ll be back later.” While I don’t really go to a job, I am not straying far from the truth because I really DO need to go home and get some laundry and housework done.
If at all possible, I try to leave when she is resting comfortably in her bed. She may look for her family when she wakes up, but she will be looking for me expectantly, rather than feeling like I have abandoned her.
Momma’s comfort item is her dolly. I try to make sure she has it in her lap and is occupied with “Dolly” when I slip away.
Snacks help. I sometimes leave a cookie on mom’s windowsill. Even if she sees me walking to my car (her window faces the parking lot), the next thing she will see is her special treat and then all is well.
Loving and gentle touches help her relax. You know how it feels when someone plays with your hair, or runs a brush through it? It’s an amazing feeling. I try to be there when mom finishes her twice weekly shower, as she is usually not a particularly willing participant in that activity. The minute she sees me after she is wheeled out of the shower room, she looks SO relieved. I take those post-shower moments to blow-dry her hair and gently brush it.
“So, are you still doing that radical wheatectomy diet thingy?”
That’s a question I was asked just this week. The short answer is yes. I have continued to eat wheat-free and have essentially been eating gluten-free since early October. If you didn’t see my first two posts on this subject, you can read them here and here to find out why I began this journey.
Now, here’s the reason I plan to continue avoiding gluten in my diet. My muscles and joints are no longer screaming at me. In fact, after a long hiatus, just this week I felt well enough to resume going back to the gym. I’m easing into it, but I’m back and loving the feeling of a different kind of pain.
It has been an interesting journey as I began paying more attention to food labels and have started playing in the kitchen in order to revamp some of our favorite recipes and transform them into gluten-free alternatives. This new dietary discipline has helped me develop a more consistent routine related to meal planning and preparation. Home-prepared salad lunches have become my daily standard fare, with me preparing a scrumptious salad each morning before I leave the house to go to the gym then off to visit with my sweet mom.
My conclusion: gluten definitely plays a significant role in creating an inflammatory response in my body. The effort involved in shopping, cooking and eating gluten-free is definitely a good investment in living a life with much less pain.
Momma still likes to exercise her own independence when moving about. It is her right to do so, but it does sometimes result in a fall. Momma had a “doozy” of a fall a few months ago. No one is exactly sure what happened; they just heard her calling “help me” and found her lying on the floor on her side, trying her best to right herself. Thankfully, with a little help, she was able to get back into bed without emergency intervention. In the days following, she was sore and showing signs of having bruised or fractured her tailbone and ribs. I opted not to have her x-rayed, as the results might give us a diagnosis, but would not change the treatment plan. At this stage in her illness, Momma’s plan is for comfort measures only.
Mom was in a considerable amount of pain following the incident. Hospice recommended we start giving her some stronger medication to help manage the discomfort and quiet her anxiousness. A low dose of morphine was started, but wasn’t particularly effective; plus, mom seemed to have an allergic reaction. Once switched to hydromorphone, she was very sleepy, but pain was much better managed. Before long, Momma was back to tooling around in her wheelchair visiting with the other residents and “borrowing” seemingly abandoned baby-dolls and stuffed animals to care for in her room. That was the “upside” of administering narcotics.
The “downside” is that narcotic medications cause constipation. With an injured tailbone, constipation can become a formidable and painful foe.
Another “downside” is that the medication also makes her more confused – so much so that her speech comes out in an incoherent, rambling, jumble of meaningless words and random thoughts. This confused speech is a condition known in the world of dementia as aphasia and is often referred to as “word salad.” Usually a symptom first noticed in earlier stages of the disease, aphasia makes finding the right word very difficult. It grows progressively worse as the disease marches on, complicating oral and written communication, making interpreting someone else’s words in a conversation or reading a sign frustratingly difficult.
The most frustrating “downside” is non-stop chatter. Usually fairly quiet and non-conversational at the dinner table, the medication caused Momma to talk non-stop. She barely came up for air between one string of jumbled words and another. Mom’s usual table mates at lunch grew very weary of her nonsensical babbling, with one of them growing impatient enough to take a frustrated swipe at mom then slam her fist down on the table demanding, “Please! Someone just make her be quiet!” Thankfully, the impatient neighbor (not the one pictured below) missed in her effort to lash out at her too-gabby neighbor, and I was able to move mom out of arm’s reach and help her focus on eating her lunch.
Narcotic medications were not necessary to bring on the word salad of aphasia, as it was already rearing its ugly head along with other symptoms which signaled the progression of Alzheimer’s. The medication just tossed the salad, so to speak. If you would like to learn more about aphasia (and 3 other A’s: amnesia, apraxia and agnosia), I highly recommend reading the article “The 4 A’s of Alzheimer’s Disease.
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.