Tuesday’s Caregiving Tip: Keep a journal of those special moments with your loved one.
To my fellow caregiving friends who are still in the hustle and bustle of caring for a loved one with dementia, be sure to take time to write down those special moments. I wish I had kept an actual chronological handwritten journal, but am so glad I blogged and took photos…and posted cute stuff on Facebook.
I moved in with mom for a period of about 9 months. It seemed long and tedious in the midst of it, but just a tiny blip on the radar of life in retrospect. I’m glad I posted this fun memory on Facebook and hope it will bring a smile to someone’s face today.
This is the third in a series of posts inspired by an article from Alzheimer’s TODAY called Tiny Gifts That Are TREMENDOUS, where Mary Kay Baum shared a helpful A-to-Z list of caregiving suggestions Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey.
Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey. [Click here to read the original article].
Fear not if I take a break from commotion.
We were celebrating a birthday at our house. Mom sat at her place at the table and enjoyed watching the festivity and seeing a few of her great-grandchildren. Though she didn’t contribute much to the conversation, my heart was warmed by her smile as she watched the birthday boy bask in the attention. After the candles were blown out and the cake was served, mom quietly stood up with the help of her walker and then scootched down the hall the short distance to her room. She was done with company. And that was okay.
On a previous occasion, when mom was living in a senior apartment, the residents were hosting Trick-or-Treat for the neighborhood kiddos. During our city’s Trick-or-Treat hours the residents gathered in their activity room and waited for the steady stream of costumed guests. I thought mom would enjoy seeing all of the kids and handing out candy with all of the other seniors in her building. She stayed for a few minutes, then went back to her apartment; it was just too much for her. I had invited a few kids from church to come to the event. When they arrived, I invited them to visit mom in her apartment. Mom enjoyed the smaller gathering so much more.
During this phase of her journey with Alzheimer’s it became my mission to keep her engaged by inviting people to see her. One or two people would join us for lunch; another day someone might come over to say hi and work a puzzle or engage with her by sitting with her at the table coloring. One family from church brought us pizza for supper one evening, then stayed for a bit so the girls could sort through a jar of buttons with mom.
Go with me and others on quiet nature walks.
Truth is, in the later stages of dementia, most days it was nearly impossible to get my mother outside of the house for a little fresh air. It was a treat when it happened.
If the weather was nice and I could coax mom outside, I’d get her seated in a wheelchair and push her to our neighborhood park.
She enjoyed watching the children play at the splash park, seeing dogs being walked along the pathways, and would occasionally engage a perfect stranger in conversation.
We didn’t stay long, as the charm of our outdoor excursion would soon be replaced by the fear of being able to find our way home. By the time I got her back in the house, she had already forgotten our little trip. Even though it was forgotten, the benefits of the fresh air and the infusion of joy would linger in her demeanor.
One day, out of the blue, mom wanted to “check the mail,” so I let her go outdoors with her walker. She enjoyed that little trek down to the curb and back.
Since she was in a good mood, dressed decently, and it was nearly dinner time, we decided to put her in the car and go for a drive to the nearest Culver’s for supper.
She thoroughly enjoyed every bit of it…especially the frozen custard.
Once my mom made the move to assisted living memory care, getting her out of the front door was even more rare. This photo shows one of those sweet occasions when her great-granddaughter Violet managed to get her outside to sit on a shaded patio.
As Alzheimer’s continued its relentless march claiming bits and pieces of my mom’s brain, it was evident that mom’s world was shrinking right along with her memory. All too soon there came a day when the world outside of Mom’s front door became too scary of a place for her to venture.
That was the day when “go with me” became “be with me.”
As a kid, there was one ride at a carnival or theme park where you would rarely see me:
bumper cars
I hated them.
Sorry, I don’t have a personal photo to illustrate this paragraph; if I did, I would be the terrified looking kid (or adult) stuck in the corner with everybody crashing into me. There was nothing fun about it.
I can probably count on one hand the number of times I have allowed myself to be in a bumper car. Each of those times my participation was only under great duress from a friend. The last time was when my kids were small (and super cute), with big eyes and sweet voices that pleaded, “Puhlleeeze, Mom!” So, I acquiesced and ended up in another corner – this time my own kids taking devious joy in crashing into me. I can smile about it now, but back then I couldn’t wait to get out of that car!
You might be wondering why I even bring up this crazy aversion related to bumper cars. Something I saw in my momma’s world today reminded me of my scary experience with bumper cars. Let me tell you about it.
As I mentioned in one of my last posts (you can read it here), mom has been closing her eyes to the world around her. Perhaps she is just tired, but I think it is her way of shutting out some of the confusing stimuli. Living life with her eyes closed may offer a measure of control over her world. In combination with her inability to hear, closing her eyes may bring peace and control to her chaotic world of life with Alzheimer’s. Nowadays, she eats most meals with her eyes closed; a bit messy and effectively shuts out any interaction with her table-mates. When she is offered the medications she takes, Mom often refuses by closing her eyes tight. In effect, she makes the unpleasant things in life disappear, much like a child who thinks you can’t see them if they cover their eyes and can’t see you.
Mom’s latest eyes closed activity has been fiddle-footing around in her wheelchair with her eyes closed. Watching her bump into walls and other obstructions in her path reminds me very much of driving a bumper car with her eyes closed. Over and over again, she’ll try to propel herself through a doorway, not bothering to open her eyes to see that she is hung up on the door frame. As afternoon anxiety seeps into her consciousness, she will bump-bump-bump her way around her room, sometimes getting stuck in a corner and then whimpering that she is stuck. When offered help, she often refuses and continues to whimper about her stuck-ness, rather than accept help from someone who cares about her.
As I watched my mom struggle with this today, I was reminded of another person who has similar self-imposed blindness.
Myself.
How many times do I keep bump-bump-bumping into obstacles to growth in my life without bothering to open my eyes to my need for help?
In an effort to encourage us to apply the truth of God’s Word in our lives, our pastor likes to give us homework at the close of his sermons. I try very hard to complete at least one of the three suggested assignments each week. This week’s sermon really challenged me and one of his suggested assignments really resonated with me. So here’s the assignment I’m prayerfully considering this week:
With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken.
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:
Swearing.
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.
Not long ago, I pushed Momma in her wheelchair out to the commons area so she would have a change of scenery and perhaps engage with others and be distracted from her current woes. As soon as she saw the other people, she planted her feet so I couldn’t push her any further, then said, “Oh, no! I’m not going there! None of those people like me.”
Just then, I believe, God sent a lovely lady named Lola to gently engage Mom in conversation. After a bit of small talk, Momma asked Lola which room she lived in. Lola pointed to her husband Roy’s room just two doors away and reassuringly patted my mother’s arm and said she was very glad to be Momma’s neighbor.
The past few days have been especially wonderful. Even though it sometimes felt like I was always cooking, having our kids and grandchildren gathered here and being surrounded by family refreshed my spirit.
Three nights in a row of good sleep didn’t hurt either.
Yesterday, our children, along with our three lovely granddaughters, lovingly came alongside us in support of a decision that Wayne and I had already prayerfully made. A spot in a lovely memory care home has opened up for my mother. Together as a family, we acknowledged that my mom deserves to receive the 24/7 care I can no longer give her.
This has been an especially hard decision for me, as it has always been my desire to walk Momma all the way “Home” here in our home. Now that mom is under home hospice care, it seemed like we were almost there. But God has given our family wisdom and showered me with peace in the midst of my tears.
Last night, Mom was out of bed before our Friday date night caregiver left our home at 10:30 p.m. Bless sweet Kathryn’s heart, she tried so hard to get mom to bed and asleep before her shift was over. It was not meant to be. Sleep would not come for Momma until a few minutes before 5:00 a.m.
Today I’m feeling physically worn out and emotionally spent. The frustrations of my sleepless night and my groggy, bone-weary body served as confirmation that the decision we made as a family is the right one.
Nine days from now it will be different.
Round-the-clock care will be available to redirect my tired and anxious mother back to the safety of her bed while I am sound asleep in my bed a few miles away. There will be no more trips up and down the stairs between my bedroom and hers all night long. No need for cameras and a video monitor to keep tabs on Momma. No need for baby gates, a multiplicity of grab bars, wheelchairs, walkers and bedside potty chair. Someone else will vigilantly monitor and carefully dispense drugs, change and launder soiled clothing and bedding, cajole her into bathing (and washing her hair), and keep her from wandering away.
I find comfort in the hope of being able to attend school concerts, participate in church activities, go to the gym more regularly, travel with my hubby, take an unhurried bath, have impromptu play dates and sleepovers with my grandkids, and play in garden dirt whenever I want. The list of all the things I’d like to do now is very long indeed.
As much as I look forward to finding our new normal, I also understand the transition will not be easy–for her or for me. The tears which trickle down my cheeks without warning remind me that I will miss taking care of mom. It has truly been an honor and a privilege and the hardest thing I have ever done.
Barefoot Lily Lady 