I’ve seen this meme floating around on social media a bit lately.
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.
You’ve put years of your life on “pause” so that you can provide the care your loved one deserved during the worst years of their life. Then, all at once, it seems, what you’ve known would happen all along finally happens.
Yet, when it comes time to hit the “play button” and get on with your life, you discover you’re not the same person you were. The all-encompassing caregiving experience has changed your life.
So, you may ask, what has changed?
In addition to knowing more about Alzheimer’s than I ever dreamed possible, I have a whole new skill set. I work with certified nursing assistants and am continually amazed at how much of what they have learned in their training I learned by necessity.
I’m much more assertive than I was prior to caring for my mom. I learned this by being an advocate for my mom and my brother with their physicians and healthcare insurance providers. I learned to speak up for what was right while making countless phone calls to people and organizations who were preying on mom and helping her spend her modest pension and Social Security income. My newly acquired boldness helped me to relentlessly insist upon a refund from the companies taking hundreds of dollars from her every month.
Another thing has changed too. My eyesight. My physical vision is changing due to a pair of cataracts, but the vision I’m talking about isn’t physical.
It’s an internal ability to see the caregivers around me more clearly than ever.
Not long ago, my hubby took me out for lunch. I saw the caregiving granddaughter sitting in the corner with her memory-challenged grandma. While others probably tuned it out, I heard her gently answering her grandma’s myriad questions — over and over again. I heard this precious granddaughter sharing and resharing the “news” of her pregnancy and the baby who would arrive in July – to the beautiful and heartrending delight of that baby’s great-grandma. I could see that granddaughter rewinding bits and pieces of her conversation: that she lived just down the block from her grandma, the names and ages of her children, what they were doing in school, and all of the details about which her grandmother was curious.
With caring for Momma behind me, and eyes that are now wide open to the world of dementia caregivers, it’s my heartfelt desire to press life’s “play button” again—this time purposefully engaging with and caring for the caregivers I encounter all around me.
I am a caregiving daughter forever changed by Alzheimer’s.
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.”
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.
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.
One story my mom told of her childhood sticks out in my mind today, but is a bit fuzzy around the edges — how I wish I had paid closer attention and written down the details while I had the chance.
Mom told of an aunt and uncle who owned a restaurant. When mom would visit, this auntie would let mom explore the former bookstore on the other side of the building she owned. When her aunt unlocked that door, mom had personal access to all of the books that were still nestled on each shelf of that now abandoned bookstore. A whole new world opened up to her as she fingered the pages of each book that she read. It is no wonder that mom carried the love of reading with her throughout life, until Alzheimer’s would overshadow her ability to read in her last year of life.
In 1964, a new branch of the Milwaukee public library opened up on Capitol Drive, in a neighborhood very familiar to my parents. Just a handful of years earlier, I had been born in the Capitol Drive hospital (where mom was a nurse) just a few miles east down the road, and my parents had lived in the house just behind that hospital for the first years of my life. Looking back, it’s no wonder my mom would be one of this library’s early patrons, or that some of my earliest memories are of her helping me choose books from its shelves. What a wonderful feeling it was when, a few years down the road, I received my very own library card, giving me my very own access to countless adventures in books, plus the resources I would need for school research down the road a few years.
Yours truly in kindergarten, the year my adventure in reading would begin. Note: mom was much better at helping me choose books to read than she was at cutting my hair.
Fast forward to 1969 when another library opened up to me. This library of just 66 books was contained within one greater volume. Yes, the Bible. It was during the 12th year of my life when I, by faith, met the Author of this book. In the very moment that I placed my trust in Christ, His Spirit came to dwell within me, unlocking and giving me full access to the truths within the pages of my Bible.
I learned a verse during that year which helped me understand the importance of this Book of all books in my new life as a believer and why it continues to speak to my heart and change me from within each and every time I spend time within its pages.
All Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness, that the man of God may be complete, equipped for every good work.
What happens when you want to remember something, but absolutely know you won’t? You write it down. For the individual experiencing short term memory loss, lists sometimes become a source of frustration. A caregiving daughter shares her view on helping her momma remember, while guarding her fragile dignity.
Journal entry from June 7, 2016
Quite often these days, Momma will ask me to buy her a notebook the next time I go to the store, declaring that she can never find any paper on which to write her lists. I know for a fact that she has umpteen notebooks and pads of paper squirreled away all over her apartment home.
Mom is at what her doctor calls the “moderate stage” of dementia where she is keenly aware that she is losing her ability to recall information and is trying her hardest to keep random pieces of information that won’t stay filed away in her brain in a place where she can easily retrieve them. Her lists are her safety net helping her capture not only her to-do list, but the stray thoughts, ideas, and necessities of life.
Once in awhile, mom asks me to take her shopping. Shopping excursions to Walmart or Walgreens invariably result in Mom tossing a new package of legal pads or a brightly colored spiral bound notebook into her shopping cart. She insists she is all out of them and there is no convincing her otherwise. Rather than bringing a sense of order to her world, the multiplicity of lists bring chaos to her sense of order as she tries in vain to gather her thoughts into one place.
I have since gathered most of those notepads/books into one cabinet in her apartment. One thing is certain–she has no need for more notepads. Rather, under her watchful eye, I acquiesce to mom’s request and jot down a note for myself on a shopping list, assuring her I will purchase a notebook for her on my next trip to the store.
You may be wondering, why not tell her the truth? Why the charade? Why not just tell her that she has plenty of notebooks? Right or wrong, I believe I am honoring my mom when I later “find” one of her notebooks and we can cross the “notebook for Mom” off my list. It gives mom the fleeting pleasure of having one of her requests granted, and I receive the gratification of pleasing my mother and guarding her fragile dignity.
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 – M. Today I am sharing my thoughts about “N” and will add my own “O,” since the article did not address that particular letter. Thanks for stopping by to read my blog – the “likes” and “comments” of my readers feed my motivation to write.
N – Note that I take your words literally, so avoid teasing and sarcasm.
In the early stage of memory loss, mom would sometimes take “just kidding” comments quite literally. Likewise, when mom reached what was thought to be the stage of “moderately severe” memory loss, it seemed that her ability to understand and appreciate sarcastic humor and irony disappeared too. This was especially noticeable in social “table talk” situations.
Teasing and sarcasm are part and parcel of family gatherings such as Thanksgiving. We like to tell stories on one another and kid each other about silly things we’ve done lately. We sometimes use tongue in cheek jesting during our bantering around the table. Mom always had a quiet sense of humor–she would appreciate a good joke, but usually was not the one to tell it. She’d smile at the kids. But now, while she herself could often say something witty, there was no understanding of the “punch line” to someone else’s joke and a blank look at any attempt at humor.
Turning off the humor at the table isn’t the answer, but understanding how our loved one with dementia might be processing the conversation can be helpful in making the conversation inclusive for them too. Our bigger family dinners (e.g. Thanksgiving and birthdays) were the most confusing for my sweet mom. She would sometimes leave the table and go to the quietness of her room. When that would happen, family would go in an visit her one on one. She enjoyed that experience much more.
Another helpful tactic was to do something mom enjoyed at the table. Working on a puzzle or coloring became a unifying factor in conversation for her.
O – Own up to your mistakes in caregiving, but don’t beat yourself up about them. Mercy is new every morning.
I freely admit to making a lot of mistakes in caregiving. I recall days when my voice carried more than a little annoyance in it and harsh words would fly. Days when I was anxious and weary and my facial expressions did not communicate Christ-like love and compassion. There were times when I would confuse mom by asking if she remembered something when I knew full well that she couldn’t–or, similarly, when I would expect her to remember something we had already talked about. One of the hidden grace gifts of Alzheimer’s is that momma wouldn’t stay hurt and mad at me for long. She would soon forget my blunders and I would have another opportunity for a do-over in caregiving.
Likewise, in other relationships, there were times when I did not express my appreciation freely enough. I’m thinking of a time when I made my sister feel bad about how she handled a caregiving situation, rather than being gracious and knowing she did what she thought was best when she was taking a turn at caring for our mom. It’s sometimes easier to see the mistakes and failure of others than it is to see the same problem in our own lives.
It’s a wonderful thing for me as a believer in Christ to know that His steadfast love for me will never cease. Never. Ever. His mercy will never come to an end. Never. Ever. I praise God for His faithfulness in providing a daily (constant) supply of love and mercy. Knowing and believing the truth expressed in Lamentations 3:22-24 helped me through many times when I felt like a dismal failure as a caregiving daughter.
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” (Lamentations 3:22–24)
Written with love and great admiration for all those who are caring for a loved one who is facing Alzheimer’s or any other diagnosis that spells memory loss. I write from my experience of caring for my sweet mother in her later years with Alzheimer’s.
Here’s the next in a series of posts inspired by A-Z Caregiving Tips (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 tips on A – L. It seems I have a lot to say about “M,” so I will focus on that for this week.
Make new ways I can be of service to others
Mom was a nurse. A dedicated and amazing nurse. Even after she retired from her long career in nursing, she still practiced nursing in an unofficial way as she came alongside family and friends as they went through their physical trials in life. She was dad’s constant companion whenever he faced any of his cancers and surgeries. She served her friends as the requisite driver and responsible party when those friends faced day surgeries of various types. If someone was hospitalized, she was almost always one of the first visitors. Several of her friends had her come along to their surgeon’s or oncologist’s office when they were going to receive their scary diagnosis. Mom knew just the right questions to ask and how to help her friends through the difficult days ahead.
The time came when Mom was the patient with symptoms of short-term memory loss. I’m sure she knew something was amiss long before I started noticing memory blips. Who knows how many years she wrestled with that knowledge alone? Based upon dated notes and lists I found here and there, I would say for a few years.
Although Mom forgot many things, the experiences of her lifetime still served as a guide in her daily interactions. Even after mom moved in with me and then later into assisted living memory care, I routinely saw the nurse in mom present when she’d notice someone wasn’t feeling well and then do her best to make sure they were cared for appropriately.
She usually couldn’t remember she was my mom, but I saw the loving mother in her displayed in the way she cared for dolls. It was like a special window into her past which allowed me the privilege of seeing what she may have been like when she mothered me as a baby. (Mom and me in this photo.)
Let me share just a few photos of her doing things which made her feel useful during her years spent living with dementia.
I’m thinking now of a resident at the assisted living memory care home where my mom lived for her last 14 months of life. June was usually the first one up every morning. She took very seriously her job of raising the window shades at the start of the day. The staff would then present her with a large basket filled with freshly laundered clothing protectors (bibs) and towels. June took great pride in folding them.
My mom would do the same thing when she was living with us for a few years. She loved to fold laundry, especially when it was warm out of the dryer. The warmth felt good on her arthritic hands. She would also dry dishes for us. Her legs were unsteady, so I would set her up with everything she needed at her place at the kitchen table. Mom had also been into gardening, so I would occasionally try to get her outdoors to help me. She especially enjoyed deadheading and cutting back spent foliage. Her specialty, however, was sweeping. She couldn’t stand to see even one leaf on the deck or porch, so we’d arm her with a broom and she’d happily sweep for quite some time.
I can’t talk about this subject without thinking of Heather, an amazing blogger I follow who cared for her sweet mother too. Heather’s mum, Margaret, had been an artist, so Heather would play to her mum’s interests and strengths by creating art therapy projects for her to work on throughout the day. They even opened an Etsy shop in order to sell some of her ‘Made by Mum’ projects, donating a portion of their profit to the Alzheimer’s Society. Heather’s amazing website Creative Carer is filled with photos and tutorials, a link to her very helpful and inspiring blog, and oodles of practical ideas for caregivers who desire to keep their loved one meaningfully engaged.