Keeping loved ones with dementia disorders such as Alzheimer’s engaged during the hours when you’d like them to be awake is a key to combating the dreaded, but all too common disorder called Sundowner’s Syndrome. Sleep is vital, not only for our loved one, but for those of us who provide their care.
My mother never seemed to develop a traditional hobby. Following her retirement from nursing, she tried her hand at cross-stitch and dabbled with making earrings, but “crafting” just wasn’t her thing. Our family wasn’t much for sitting around the kitchen table playing cards, working puzzles, or coloring either.
My Mom took over gardening duties when Dad was in his final battle with cancer. I’d say she was a natural at gardening, enjoying spending time “scootching around” on the ground tending her plants and actually enJOYing pulling weeds. Nearly every inch of dirt seemed to burst forth with floral splendor. When we found it necessary to move her out of her home and into a senior apartment, we brought along her favorite blue pots so she could enjoy tending a few of her favorite flowers on her little patio.
But, her favorite past-time by far was serving God by serving people. One of the hardest things about her journey with Alzheimer’s was watching her having to give up her various ministries and activities. One by one, as her driving became limited, so did her opportunities to serve. As her knees and arthritic hands gave out on her, the desire to garden fell away. When her memory faded, so did her ability to have meaningful relationships with her friends. Faded memories were slowly replaced by compulsive behaviors common to those with dementia. Pacing back and forth. Rummaging through drawers and closets. Sorting through her purse. It soon became evident that we needed to introduce something enjoyable so that we could redirect her attention from these compulsive behaviors to something encouraging.
We ordered a few coloring books; at first she didn’t have much of an interest. So I would sit at the dining table and color in her books. Sooner or later, out of curiosity, she would join me. Before long, she was coloring on her own. Now, when children come to visit, she loves to have them color with her and will oftentimes take on the role of “coloring teacher” as she instructs her students on the finer points of choosing the appropriate colors, staying within the lines, and shading and outlining.
The gardener in her loves flowers and butterflies, so many of her coloring books feature a plenitude of these these creatures. Because Momma is a woman of faith, we have found that coloring books with Bible verses are especially meaningful to her. [For a link to one of her favorites, click here.]
Wayne bought her this lovely set of Thornton’s colored pencils in a zippered binder-type case. It was a game-changer! For some reason, she is partial to greens and yellows when coloring, but she loves sorting the many pencils in this case. If you should stop by for a visit, you can also be sure that she will take great delight in offering its colors within and an invitation to sit down and color with her.
This Tuesday’s Caregiving Tip: To calm, encourage and distract the anxious Alzheimer’s mind, try coloring.
The more I write about my journey as a daughter and Alzheimer’s caregiver, the more I realize I am not alone on this bumpy road. Since I began journaling on Facebook two years ago, and now on my blog, I have been amazed by the number of friends, family and readers who have shared that they have been or are on a similar journey in life.
I shouldn’t be surprised. When I open the pages of my Bible to the book of James, I am reminded in the very first chapter that “trials of various kinds” are to be expected. They are, in fact, necessary in the growing process of producing a steadfast faith.
James even says that I am to “count it all joy” when these trials, testings and troubles in life come my way. Now, I don’t think James was necessarily talking the laugh until your sides split kind of joy, but the inner confidence that radiates from within knowing that, with God, I’m going to make it through this and be stronger in the end. It’s the complete trust that this trial or test will give me an opportunity to grow, to stretch my faith, to seek His wisdom, and to demonstrate to a watching world by my actions that my religion is not vain or worthless, and that my God is nothing short of awesome.
I am further reminded in 1 Corinthians 10:13 that “no temptation has seized me, except what is common to man.” My Bible study companion these days has been Dr. Joseph M. Stowell’s book, The Upside of Down, subtitled, “Finding Hope When it Hurts.” He tells me that the word “temptation” in this verse comes from the same group of words as the word “trials” in James 1:2, and that it could also be translated “troubles.”
My “trouble” or “trial” in life at the moment is being a caregiver to my mother who struggles with Alzheimer’s. It would be foolish for me to think that I am alone on this journey. In addition to having the Lord with me, there are countless others who have been here before me. I need only look in the “comments” section of my blog or on Facebook, or to the private messages I receive from those who do not want to comment in public, to know that there are many others who even now are on the road with me. A plenitude of websites and Facebook pages are devoted to those who are facing the trial of caring for someone with dementia. I currently am part of a support group at www.myALZteam.com, whose stated purpose is to provide a social network for family and friends caring for a loved one with Alzheimer’s. I write about my journey for them – and for those who are yet to sojourn here too.
If you are suffering through a trial, rest assured, what you’re going through is common to others. You can find someone else who has been there. My trial is the sometimes brutal and heart-rending task of taking care of Momma, a trial which pales in comparison to the trials of many others I know. Yours might be the devastating loss of a child, or estrangement from a spouse of many years. Perhaps it is the fear of the unknown due to a job loss, a scary medical diagnosis, or a financial upheaval. Or, just this week in the news, the many who suffered a sudden tragedy or loss at the hands of someone whose mindset was diabolically evil. No matter what your trial might be, look for someone who has been there before – someone who brought glory to God in the end.
Maybe you’re the one who is already on the other end of that trial – already experiencing the joy in seeing how God was at work in your life – securely resting in the knowledge that the trial was for your good and God’s glory. If that’s you, please reach out to someone who is still trudging forward in the muck and mire of their personal journey with pain. Put your hand on their shoulder and tell them that you understand. You’ve been there. For you, my friend, are the one who can honestly say from your heart, “Let’s talk. Let’s pray about this together. We’ll get through this together, by God’s grace and for His glory.”
This morning Momma emerged from her room carrying a photograph and a ballpoint pen. She had an all too familiar look of confusion on her face as she shuffled walker-less to her place at the kitchen table. As she gingerly turned herself and plopped hard in her chair she lamented, “I just can’t remember anything today. What day it is, what time it is, who am I, why am I here? It’s all so confusing. And who is this in this picture?”
I took a peek at the picture to see if I could help. It was one of the pictures my sister had been wondering about. The photo, along with a handful of other pictures of Viv’s children in their growing up years, had mysteriously disappeared during her last visit with Momma. Knowing Mom’s propensity to hide things, Viv had texted asking me to keep an eye out for the photos. I had found the others, but had missed this one.
“That’s your grandson Scotty when he was a boy. He’s a daddy himself now.” Momma sat silently studying the picture for a few moments, willing her mind to remember, but obviously drawing a blank. “Oh, no! I wrote on the back of it!”
Momma’s handwriting was definitely on the back of it, and the picture had been ruined by the tell-tale ballpoint markings. Momma had used the photo as if it were a piece of scrap paper, copying what she had read off of the face of the clock in her bedroom. Momma tried to reconcile what she had written on the photo with what she saw on the clock on the microwave. “No, it’s supposed to be 7:13, not 7:30!”
There was no point in trying to explain that time changes by the second. This was one of those moments in Momma’s changing world of Alzheimer’s where I could almost feel another piece of Momma’s mind slipping away.
I asked Momma if she remembered her name. She assured me she knew it, but wouldn’t say it. I prompted, “Of course, you know you’re Charlotte Peet Boyles.” She looked relieved at the reminder of what her name was as she nodded her head in agreement. I smiled at Momma in an effort to encourage and calm her, but on the inside, I cried knowing she was fearful of what was happening to her.
I find comfort in knowing I am not alone in this phase of life. I follow a blog called “God’s Grace and Mom’s Alzheimer’s.” The author’s own Mama had gone Home to be with Jesus in December of 2016, after a long battle with Alzheimer’s. Cheryl had been there with her through it all. Now, her mother-in-law lives with her, traveling a similar path in life. Today’s post met me where I am. I share it (click on the link below) for those of you who are in a similar place in life right now – in need of a reminder of God’s grace in the midst of a seemingly impossible trial.
As I take care of Momma, the familial aspect of Alzheimer’s disease sometimes scares me. That fear isn’t all bad, in that it helps me realize that it is true that my lifetime is just a “few handbreadths,” a “mere vapor” that will pass before I know it. What I do with my days really does matter. Continue reading “Life: Just a Few Handbreadths”
Wayne and I recently checked one more thing off of Momma’s to-do list mentioned in the following story posted on Facebook in 2016. We met with our local funeral director and pre-paid Mom’s funeral. It’s nice to have that one out of the way. There are so many financial planning and legal matters to attend to when it comes to caring for a loved one who can no longer care for themselves. I hope by sharing this information, light is shed on someone else’s journey.
Facebook journal entry – February 4, 2016
- Power of attorney documents
- Original copy of her will (along with a copy)
- Cemetery and burial plot titles and documentation
- Mom’s wishes related to her funeral service – including the hymns and scriptures she would like to include
- A list of people mom would like me to notify concerning her home-going
- A list of legal tasks I will need to complete.
Admittedly, this reference binder is more for me, than for mom. When God chooses to call my mother home to heaven, my job of honoring her final wishes will be much easier. On this side of Glory, we will enjoy our time with mom and rejoice in knowing our summer of checking things off her to-do lists brought her great peace of mind.