A sweet friend and aspiring blogger once asked me to guest write on her fledgling blog. I was happy to do so, as I was trying to get my own blogging endeavor off the ground and thought exposure to someone else’s audience might be helpful. As we all know, life doesn’t always follow our plans. God had other plans. My friend’s life filled up with the other good things God had planned for her life, and the blogging endeavor went by the wayside.
I almost deleted the article I wrote as a guest, because it remained unpublished in my draft folder for years. Before hitting “delete,” I re-read it and decided to hit “publish” before another year passes. It is my hope that this post will encourage another caregiver. I hope they find that no matter where life leads us, with God’s assistance, we can live by God’s grace and for His glory.
If you are a caregiver for a loved one with dementia (or some other form of life-altering illness), there may come a day when you realize you need to consider other options for providing the best care. Perhaps the post that follows will be helpful as you wrestle with that important decision.
I walked alongside my mother in the part of her life where Alzheimer’s dementia was her daily companion. I’m grateful for that time spent with her and learned so much as we traveled those years together.
She’s been enjoying heaven for three years now —freed from the bondage of failing mind and body. In these three years, I’m gradually learning to enjoy the freedom to spend moments (more like hours) of joy playing in the dirt in my garden.
If you were to visit my garden (and I hope you will), you might notice little splashes of purple objects d’art sprinkled throughout the flowerbeds. Second-hand curtain and drapery rods, trellises, and various chairs have all taken on a coat or two of purple spray paint.
Why purple? It’s both in memory of my mother (who loved that color), and also my quiet nod to Alzheimer’s awareness.
I’m joining Cathy at Words and Herbs for her annual ‘A Week of Flowers’ meme. It’s Day #2 and I’m happy to take you on a little reminisce of some pretty spring and early summer days in my garden. Let me introduce you to a few of my favorite peonies.
Rewind of a Facebook Note written sometime in 2015
I made Momma cry today.
Somewhere near the intersection of my trying to be helpful and Momma’s trying to remember, she snapped at me, shooed me away with the wave of her hand, blurting, “Get out of here! Leave me alone! Let me just try to think about one thing at a time!”
With more hurt and frustration in my voice than I intended, I retorted, “Alright Momma, I’ll leave you alone!” Retreating to the solitude of my former bedroom, I felt the door slam behind me, hot tears stinging my eyes, ready to gush at a moment’s notice. I really wanted to throw myself on my bed, bury my face in my pillow, scream and bawl, then drift off to sleep, leaving the nightmare of Mom’s advancing memory loss behind.
Mom in her favorite chair–surrounded by great-grandkid love (circa 2012)
Instead, I stood there in the middle of the room and cried out to God. I was only in prayer for a minute or two, maybe even only a few seconds of time. But in that small measure of time, I felt God’s presence. He was speaking to me. Not in an audible voice, but in that place in the very core of your being where all of life’s decisions are made and emotions are felt. That place where you love. The heart.
God was reminding me He was there and that we would get through this together.
Gingerly opening my bedroom door and peeking down the hall, I spied my sweet Momma at the other end of the hall. She was right where I left her minutes ago, sitting in her favorite chair in the living room, quietly dabbing away her tears of confusion with great big wads of tissue.
Humbled in heart and quieted by the Spirit, I went to Momma, knelt in front of her, then wrapped her in my arms and said, “I’m so sorry, Momma.” My sweet mom put her arms around my neck in a motherly hug and laid her tearful, trying-to-remember weary head on my shoulder.
“Momma, Jesus will help us through this.”
“I know. I know,” acknowledged Momma with gentle, reassuring pats on my back.
One major item that has been near the top of my list for several years now has been to cut down two diseased and unsightly spruce trees in our front yard. I was out pulling weeds one day earlier this summer and noticed there were tree trimmers working in the neighborhood, so mentioned it to my hubby. He surprised me by immediately walking down the street and engaging in conversation with a young man on the crew–the son of the owner of the company. A few minutes later, they came for a look-see and before I knew it we had a contract and the trees were felled by the end of the day.
Now that the spruces are down, we have a brand new full-sun garden space, and I am enjoying choosing what to plant in that space. First order of business, however, was to deal with the weeds that had gotten a foothold underneath the spruces. We also needed to relocate some of the shade-loving hostas to a more wooded location in the backyard. For the most part, I’m able to divide some of my existing sun-lovers from other flowerbeds, so I moved in a few daylilies and a trio of Allium ‘Millenium,’ an ornamental flowering onion that literally blooms all summer long.
Even with this good start, this new flowerbed was the perfect excuse for a trip to our local garden center. I knew I wanted to add a flowering tree, so Monrovia’s Magnolia ‘Elizabeth’ now graces that flowerbed. I look forward to its giant, tulip-shaped, creamy yellow blossoms in the next year or two. I’m also quite in love with hydrangeas these days, so two of them hopped in my shopping cart and now anchor the front side of this flowerbed (I really wish I had bought a third).
Adding a stone borderA happy group of blue ColumbineMagnolia ‘Elizabeth’
Inspired by Butch and Pam over at Everyday Living, whose annual plethora of gorgeous zinnia photos caused great envy, I planted more than my usual packet or two of zinnia seeds this year. My husband bought a big canister of Renee’s Garden heirloom zinnia seeds for me while we were on vacation in June. I lost no time in scattering the seed when we returned home. Wowzers! They did not disappoint. Look at all that amazing color!
A rainbow of colorDwarf ‘Limelight’ HydrangeaMomma’s blue flowerpots
If you’ve read my blog for any length of time, you know that my sweet mother passed away in 2020 after a valiant battle with Alzheimer’s. You might spot two of her blue flowerpots in the photo above. Those flowerpots sat on the front porch of our family home for several years. When dementia took its toll, I moved her to live closer to me, bringing those blue flowerpots along as a connection point to her past. Oh, the stories she told about those pots! I planted some annual ‘Hawaiian Punch’ hibiscus in them this year and set them toward the front half of the new flowerbed. I think mom would have approved.
If you ever had the pleasure of knowing my mom, you would probably describe her as one of the kindest and most caring people you have ever met. Her sweetness was a predominant character quality, even as Alzheimer’s claimed more of her memories and abilities. I’ve written about her loving care for doll babies, and about how the nurse came out in her so often in her last year of life in assisted living memory care. Here are a few photos of her sweet self.
Sometimes, however, momma wasn’t so sweet. She’d take a swing at my head when I was kneeling in front of her trying to help her tie her shoes. She once threw a frozen dinner at my brother when he was sick in bed and started screaming at him. We theorize that she was just so very frustrated that she couldn’t remember how to work a microwave anymore–she wanted to help him, but didn’t know how. In assisted living memory care, a mean streak would occasionally surface when someone was assisting her with a shower. Mom wasn’t one to use profanity, but would very occasionally let angry words fly when someone was just trying to help her.
It wasn’t mom. It was what Alzheimer’s was doing as it ravaged her brain.
It can be very stressful for the caregiver when someone they love suddenly becomes combative and aggressive. Sometimes there are physical reasons why a loved one is lashing out – like pain, or a urinary tract infection, or frustrations over not being able to physically do something (like tie her own shoes, or stand without assistance).
Timing
For my momma, it was sometimes the timing of what she was being requested to do. We learned very early on that it was futile to awaken her for a meal or a shower—that was just begging for angry outbursts and uncontrollable tears. Sometimes she’d refuse food at mealtimes. We learned it was best to just let her be—she would often forget she was mad and be sweet as pie when you reintroduced the same plate of food a few minutes later.
Speaking of pie, we also learned that if we would “lead with sweet” by serving mom’s dessert at the beginning of her meal, she’d eat her dessert and then just keep going. It also helped to let mom bring Dolly with her to meals. Dolly didn’t eat much, but sometimes needed her face washed after meals.
Fear
Sadly, my mom oftentimes became very agitated and fearful at the prospect of taking a shower. This is VERY common. I first noticed it in the moderate stage of dementia. If a shower was suggested, she’d have every reason in the world not to do it now. She generally used stall tactics, like, “Later.” Or, “I already showered before you got here.” As the disease progressed, there would be no question about it—mom would NEED a shower. One of the wisest things I ever did as a caregiver was to hire help for bathing. I was extremely thankful for the aides who came to assist with this need. Their training prepared them for the ups and downs of performing the necessary hygiene tasks, and each aide had tricks up her sleeve as to how to help alleviate mom’s fear and anxiety.
There were times when even the aides were unsuccessful. Sometimes the best we could do was give mom a bed-bath or a quick wipe-down. I found it really convenient and helpful to use these disposable washcloths–they could be warmed in the microwave, which mom found very soothing.
My heart goes out to you caregivers who are dealing with combative and aggressive behavior with your loved one. Every situation is different, but I hope my experience with mom will help someone else get through this. If you’d like more information, you might want to check out this informative and helpful article, “Dealing with Aggressive Behavior”.
I confess that I haven’t read any of this author’s books, so am not sure of the author’s context for this quote. I do know that his philosophy of life leans toward encouraging simple, minimalistic living. Its something to which I aspire, especially since I have reached the summit of decade six and am now careening at breakneck speed toward number seven. However, each time I read, “Be a curator of your life,” something strikes me as being untrue in my life. While I do make choices each and every day to simplify my life, I’m not so sure I am (or even want to be) my life’s curator.
God is a better Curator of my life.
As I look back over the past several years, I see things in it that I wouldn’t choose, but He allowed. I’ve seen family relationships crumble — not something I orchestrated or desired, but even that hardship passed the muster of His divine curatorship in my life for my ultimate good and His glory.
On this day in 2020, my life took an expected turn which left me with more unexpected feelings than I ever dreamed possible. It was the day my momma met Jesus face to face. It was fully expected–I knew in my heart she would be leaving. When my sweet momma breathed her last, my role as her daughter, friend and caregiver suddenly ended. While the weight of years of caring for her was now lifted from my shoulders, I also felt an unexpected void that my “purpose” as mom’s caregiver had previously filled. Even in the midst of incredible grief, my sadness was wrapped in the grateful realization that my loving God had edited and rearranged my life in a way I could never have planned so that I could walk my sweet momma Home.
The heart of man plans his way, but the Lord establishes his steps.
Here’s the next in a series of Tuesday’s Caregiving Tips posts inspired by A-Z Caregiving Tips (an article in Alzheimer’s Today pictured below). A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. You can read my previous posts for my personal tips on A – O. Today I am sharing my thoughts about “P” and “Q.” Thanks for stopping by to read my blog. Readers, you are most welcome (and encouraged) to share your own tips and observations about dementia caregiving in the comments below.
If the generation before me said, “Mind your p’s and q’s”, it was usually said in a firm tone of voice. It meant be polite and mind your manners–it might also mean to watch your language. Today we have come to the letters ‘P’ and ‘Q’ in our alphabet-inspired suggestions for dealing with loved ones with dementia. Both letters speak to watching what we say–‘P’ encourages us to fashion our conversations in an encouraging way, and ‘Q’ reminds us to omit certain words in order to help our loved one avoid the embarrassment of not being able to remember a person or specific event. Both are equally valuable tools in the toolbox for good caregiver communication.
Please affirm what I contributed and still do contribute.
I feel like I’ve covered this in previous posts, but it probably can’t be overstated. For as long as my sweet Momma was able, it was important to let her tell and retell her stories of her years as a nurse. The day would come when she could no longer recount those stories. At that point, it became my turn to tell her the stories I remembered her telling me. One such conversation went something like this:
Momma, I remember when the whole city of Milwaukee was snowed in and you stayed at the hospital and worked three days in a row because no one could get to work on the deep, snow-drifted roads. Then someone gave you a ride home on a snowmobile. First, you had them take you to the grocery store so you could buy your family food to eat, then he took you the rest of the way home. I remember that, even though you were very tired, you fixed us supper, then slept for a very long time.
The story was actually a confabulation — a mixture of truth and her own version of the truth. As a nurse, she had always worn a watch with a sweep-second hand so she could take pulses the old-fashioned way. Momma still liked to wear the last watch she owned as a nurse. There came a day when neither story lingered in her mind. It was my turn to point to her watch and help her recapture that story, if only for a moment.
Oh, how my mom loved to work with children–her own and the children of others. In addition to being a very involved mom, she was also a leader of a local Brownie troop. Later, she would work for many years as the secretary for the Awana girls’ club. Her grandchildren adored her. No doubt the open-fridge policy had something to do with their love of spending time at their grandparents’ home, but their teenage years were nurtured and fed in more ways that food because mom and dad gave each of them a housekey and made sure they knew they were always welcome.
For my part, I loved to reminisce with mom about some of the special ways she blessed our family. I would show her photos of some of the fun times she had when working with kids in the Awana program.
One way I helped mom feel like she was still contributing something valuable was by inviting families with young children to come and share a meal with us. I would tell mom that the kids were hoping she’d teach them something about coloring, or help them with a hard puzzle. She delighted in those times around the kitchen table. As they colored, she’d proffer her wisdom in how to hold the crayon or colored pencil in such a way as to shade the color onto the paper evenly. If she was working on a puzzle with her little friends, she’d share a tip and demonstrate how to put puzzle pieces in color groupings to make it easier to find the piece needed.
Quit quizzing me with Who, What, Where and When questions. I would add Why to the questions we needn’t ask.
In the earliest stages of Alzheimer’s, mom seemed to struggle with the Who questions the most, followed by Where. Names which had been familiar would drop off her radar. As I spent more time with my mom, I learned not to ask her who she had lunch with on Sunday, or who taught the discipleship class she attended. As the names of family started to slip, I learned to slip the name of the person we were with into the conversation so that mom could be reminded of the name.
For instance, as her neighbor and friend, Gisela, was approaching to have a chat with mom in the front yard, I’d greet Gisela by name. Later in the conversation, I’d say something like, “So, Gisela, you and mom have lived in this neighborhood together for over 50 years, haven’t you?” Then the conversation could continue with mom and Gisela reminiscing about old times.
Minding our p’s and q’s in dementia caregiving helps ensure a smoother passage on the labyrinthian road in life marked by memory loss. Thus far in medical research, there are no fixes for this formidable detour of the mind. Caregivers with a well-equipped “caregiving toolbox” can bring roadside assistance and a little extra joy along the way.
In talking with other caregivers, I realize all the more keenly how incredibly blessed I was to have an amazing support system. In a recent post, I (re)shared with my readers how my loving church family came alongside me to help me in caring for my sweet mom. Today I am (re)sharing another note that I wrote and published on Facebook in 2017–which was the year mom’s Alzheimer’s disease dramatically advanced.
Barefoot Lily Lady 