For a very brief window of time, it seemed something Mom had lost had been restored. Mom always loved reading books. I thought Alzheimer’s had stolen my mother’s ability to read.
Imagine my delight when she picked up a devotional book, paged through it, then read from its pages for about 30 minutes. Unbelievable. I’m so grateful. It hasn’t happened again since then, but it was sweet in the moment that it happened.
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.
After lunch today Momma asked me to trim her fingernails. I had been refused several times lately when it had been my suggestion. Today it was hers, so I dropped what I was doing and took care of that request.
As she happily admired her shorter nails, I asked if I could please wash her hair.
“Again? You want to wash it again,” she mildly retorted.
Now that her hair is growing longer, she enjoys twirling the ends around her fingertips, adding a little 60’s flip to her hairdo. So I countered, “Yes, it has been awhile and you’re losing your pretty curls.”
It worked. A few minutes later she was humming a contented tune while I was blow drying her pretty silver locks.
Today I’m thankful that this little thing made her happy for this little moment in time.
My hubby has been gone for ten days on a short-term mission trip in Dehra Dun, India. Ten days. I know, in the greater scheme of things, that’s not very long. If all goes well with travel plans, he should be pulling in the driveway in time for lunch today. His absence has made me keenly aware of all the little things he does for me that make it possible for me to care for my mom in our home. I am blessed and grateful.
More than ever, in the time that he has been away, I have also discovered how very blessed I am with friends and family. They’ve helped me clean my house, mow my lawn, and brought me dinner and companionship. These beautiful people have spent a little time with my mom so I could go to the gym, grocery shop, run a few errands, work in my garden, celebrate my birthday with my family, or take an unhurried bath. After a Facebook post about my sleepless nights, a couple of friends carved time out of their busy lives to take care of mom for a few hours, allowing me time to take a nap. One sweet friend even spent the night so I would be assured of at least one night of uninterrupted sleep.
We caregivers are made of some pretty strong stuff. But, sometimes, some of what appears to be “strength” is just a facade – a false wall of competence that gives others the impression that we’ve got it all together and that we don’t need any help. That facade is a form of pride which causes us to struggle to accept help when it is offered.
I have been hesitant to hit the “publish” button on this blog post, because I realize many of my fellow caregivers struggle with finding people to support them and give them a little respite. My heart goes out to you. As I pull my thoughts together into words to write, I am praying that God will bring into your life people who can help.
I think it is safe to say that most caregivers have heard someone say, “How can I help?” Or perhaps it sounded more like, “If there’s ever anything I can do to help, just give me a call.” This little missive is primarily written for you. I must admit, I have heard myself reply on far too many occasions, “No, thanks. I’m okay. But, thanks for offering.”
Here’s my tip – If someone offers to help, never turn them away. Don’t put off saying “yes” for a time when you really need it. You really need it now.
I would love to hear how some of you have been helped as a caregiver, or given help as a friend. Please share your ideas and thoughts in the comments below.
“Aaaarrrgh! She keeps asking the same question over and over again. I’m going to go crazy! How can I handle this?”
Caregivers everywhere know full well that repeated questions are a common symptom of dementia and a frustrating, nerve-wracking, mind-numbing daily reality.
Dr. Natali Edmonds, PsyD, APBB of Dementia Careblazers has some wonderfully helpful YouTube videos which address many helpful topics for those she calls “Careblazers” – those caring for a loved one with dementia disorders. Dr. Natali addresses the problem of repeated questions here, but let me add a few tips from my personal experience related to dealing with my mother’s repeated questions.
One of the best ways to handle the problem is to patiently answer the question and remind ourselves that it is the disease causing the loved one to repeatedly ask the question. I must admit, the everyday battle eats away at my patience and drives me bonkers, with my mother’s hearing loss adding another level of crazy. My husband and I are so accustomed to having to use our loud voices to communicate with her that we sometimes don’t realize when we’re shouting at someone who may be visiting us in our home.
One of the smartest communication tools we have purchased is a simple lap-size white board and a few Expo markers. This little investment has brought great returns in helping answer the questions looping around in Momma’s brain. Yesterday’s question of the day was, “Where am I?” After verbally answering her question a few times, I just pulled out her whiteboard and wrote down, “I live with my daughter Cindie and her husband Wayne. This is our home.” Momma read the answer aloud on several occasions and seemed calmed by having her answer.
One of mom’s most often asked questions is: “What am I doing today?” I often use the whiteboard to inform her as to what is happening on a given day, writing this down for her in “to-do list” fashion. For example, if I plan to wash her hair, I’ll write it down as an item on her check-list. Also on the list are tasks she still enjoys doing, like folding laundry and drying dishes. Writing those tasks down on the whiteboard gives her the satisfaction of being able to cross off the task once it is accomplished.
Momma loves it when guests come to visit, but is visibly agitated when she can’t remember their names, repeatedly asking, “What is your name?” Writing names on the whiteboard helps her relax a bit (name tags help too). If children are part of the mix, we have their parents prepare them ahead of the visit for the fact that Mrs. Boyles will ask them the same questions over and over again. Kids always seem to “get it” and are very patient and kind, talking loudly to her and flashing their big comforting smiles at her each time they answer one of her many questions.
The road to communication is a two-way street. Mom will sometimes use the whiteboard to ask a question or make an observation. Other times she’ll write down her thoughts, giving me a little window into her concerns. Many times she will write down something she is thankful for, such as the picture you see below. In this picture she is writing a little note of thanks for someone whose visit she had enjoyed.
Well, that’s my tip or suggestion for this week. I’d love to hear a few of your great communication tips! Please feel free to share them in the comments below.
I’m trying to like dark chocolate. Trying, but I’m not there yet.
Not even close.
While others love it and say, “It’s healthier for you,” it still tastes rather bitter to me. Now, wrap that bittersweet dark chocolate morsel in a whole lot of milk chocolate and I’d be one happy girl.
That kinda describes my day today. A chunk of bittersweet life wrapped in layer upon layer of the sweet stuff I truly love.
My bittersweet morning began around 3:00 am with Momma waking me out of my slumber with a lot of talking and groaning. A quick peek at the video monitor showed me she was confused, asking herself questions and trying to figure out where she was. She had left her walker and shoes on the opposite side of the bed from where she usually keeps it. Just that ‘little bit of different’ totally disoriented her from being able to find the bathroom just a few feet away. Willing my sleepy head off my comfy pillow, I headed downstairs to reunite her with her walker and gently point her in the direction of the bathroom. I sat in the chair in the corner of her room bleery-eyed and awaiting her return. She needed a little extra help with navigation for the return trip, but was soon tucked safely back in bed.
As I smoothed the covers over her, she looked around the room then asked me, “Am I in the hospital?” I assured her she was at home in her own bedroom and that I would be making her a yummy breakfast in a few short hours. It took about an hour for her to settle into sleep again, and then a little more time for ME to drift off into sleep once again.
The sweet layer on my bittersweet start to the day came a little later in the morning. My granddaughters Mia and Noelle, and Natalie, a sweet girl Mia’s age that I dubbed my ‘honorary granddaughter,’ worked on an art project together.
[Actually, the sweet layer began a few weeks ago when my daughter rescued a roadside treasure from the curb and delivered it to my doorstep. My Beth is well known for her ability to turn someone else’s trash into treasure.]
Yesterday, I set the girls up with all the supplies they needed to turn that discarded chair into an artistic treasure. First, I had them sand the old finish off of the chair and then give it a coat of primer.
Later they added a lovely coat of turquoise paint. Today they worked their collective artistic magic on the turquoise beauty as they embellished it with dainty painted flowers, curly vines and beautiful butterflies. I plan to clear-coat the elegantly appointed chair and place it in my garden as a lovely support for one of my pretty plants.
I had the girls paint outside under the shade of a nearby tree where their great-grandma could watch from the comfort of her chair at the kitchen table. I hoped she would enjoy the art show. But, no. Instead, she fussed about them getting paint on them and wondered aloud (over and over again), “What on EARTH are they doing?!”
As difficult as it was to listen to my mom repeatedly worry and fret, my grandmotherly heart was full to the brim with sweet joy as I watched my grandgirls have fun painting something that I will treasure for years to come.
While I tended to the after-supper kitchen cleanup, Momma watched through the kitchen window as my husband, our son, and a sprinkling of grandgirls were having a silly water balloon fight. She tapped her fingers on the kitchen table in a futile attempt to tell them that they needed to stop that foolish craziness. My daughter Beth tried to calmly reassure her grandma and help her understand that they were having fun, that everything was okay – to no avail.
For me, the bittersweet sadness in my mom’s anxiousness was wrapped in a lovely, sweet layer of my own contentment having my grandgirls and both my son and my daughter here at the same time. I relish the moments when we eat and play together as a family.
To help Momma relax, the water play was moved to the front of the house. Still, Momma worried aloud, “Where are all my kids?” With the exception of one granddaughter, all of them will leave tonight. Yes, my mom will anxiously wonder when they’re coming home. That makes me sad. It’s the bittersweet dark chocolate center to a lovely morsel of time wrapped in the milk chocolate sweetness of my being able to enjoy special moments with my grandkids in the midst of my caregiving responsibilities.
There are many times when I walk into my mom’s room and she has this befuddled look on her face. I watch as her eyes wander slowly around the room, studying each piece of furniture, the window, and the doorways. Her eyes will land on pictures of once familiar people and a blankness has slipped over her eyes like a mask – no light of recognition.
In these moments Mom will often ask,
“How did I get here?”
I no longer answer by explaining, “Well, about two years ago I moved you from your home in Milwaukee so that you could live with me and I could help take care of you.” I don’t tell her she has Alzheimer’s. Unless she specifically asks, we don’t dwell on the fact that she can no longer handle money, make decisions, cook, drive, or take care of herself.
That’s too much information.
The answer that brings her the most comfort goes something like this:
“You moved in with me because I love you.”
Just sharing a short thought that came to mind today. I can’t imagine doing life without my husband. I know that someday one of us may walk the road of life alone – for we know not what a day will bring forth. But today, as we quietly celebrate our 42nd wedding anniversary, I give thanks to God for this man with whom I share my life.
Man is made of dreams and bones. (The Garden Song)
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