What Do I Know?

Things are changing once again in Momma’s world. In the past week or so, she has been having increasing difficulty using her legs, especially in the evenings. I can see her willing her right leg to move in front of the left, but her legs just won’t listen.  I have to come alongside her and coach her in how to walk, sometimes assisting her as one would assist a child. Other friends who are caring for loved ones with Alzheimer’s tell me that this comes along with the territory in this later stage of the disease’s progression.  We’re adapting to this change, making the best of it, but I can’t help but think about what lies ahead. The unknown can be scary.

I’ve been parked in the book of James lately, preparing to lead a Bible study for a few ladies from my church. In the first chapter, James addresses the reality of trials in life. They’re going to happen to all of us. No one is exempt. My life is getting a little uncertain right now and I am a bit perplexed as I consider what might be the next step I must take in caring for my mom. But right there in the third verse of that chapter are the three little words, “for you know.”

I ask myself, “What do I know?”  I can know that this trial has purpose. That this testing of my faith will produce steadfastness and that God is using it to perfect and complete me – to make me more like Him. And, crazy as it sounds, “count it all joy” that I have this opportunity to grow.

James 1

For this reason, I think it would be wise for me to shift my focus from what I don’t know to what I do know. 

I know my God is truly amazing! He has led me each and every step of the way so far, and He will continue to be faithful in leading me on the next step of the journey. He knows what I need in order to care for my Momma before I even have a chance to pray about it. Just like the chorus of one of my (many) favorite songs says:

You’re parting waters
Making a way for me
You’re moving mountains that I don’t even see
You’ve answered my prayer before I even speak
All You need for me to be is still

Still by Hillary Scott beautifully expresses the wonder of God’s everyday miracles. This song could very well be my daily anthem. Listen and be blessed.

I am not alone

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.

James 1I 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.”

Are You the One in Charge Here?

Lately, my sweet mother has been more than a bit confused about her living accommodations, referring to our home as “this facility” and “this place.” Not long ago, she swept her hand out in gesture as if encompassing her living space and said, “Are you the one in charge of this place?” I told her yes it was our home and that Wayne and I both welcome her to live here. “Oh,” she replied, “are my meals and laundry included?” I assured her that they were. To which she replied, “Well, they haven’t fed me all day, and I think they’re stealing my laundry. I can’t find it anywhere.”

Not long ago, she was telling Wayne that “someone who works here” had given her some pills. She wasn’t sure who it was, but figured they knew what they were doing, so she took them. It was Tylenol, and it was me giving them to her just moments ago. Oh, and the “people who clean this place” and do the gardening around here just aren’t doing their job. The floors are always dusty. The gardens have so many weeds. “You should talk to them,” she insists.

I can watch Momma’s nighttime activity on a WiFi video monitor that sits on my nightstand. That’s a blessing because I know when she needs something…and a curse because sleep is interrupted quite often. On a few occasions, I’ve come down in the middle of the night to check on Momma because I could see on my monitor that she was crying. Sometimes it’s just confusion about where she is, but oftentimes it is her worrying about how she is going to pay for this place when she can no longer work and earn money. She’ll sometimes tell me that “they” are going to kick her out when her money runs out. On those occasions, I’ll sit with her for awhile and reassure her that she is loved, that she is retired and has plenty of funds, and that we will always take care of her no matter what.

One of Momma’s blue pots

Momma can make you smile with her wild tales about how she came to live here. On Saturday, a friend from church and her two young daughters spent the morning with Momma so that I could attend a Bible Conference with my husband. They had a delightful time, but, oh, the stories Momma told them while I was away. She enjoyed telling how this house was hers and that she shared it with us, describing how we had divided it up into her side and our side. And, of course, she had planted the gardens, adding to them over the years. (Mind you, she has only lived here since May!) She even shared with the girls that she had made her three blue flower pots when she was in kindergarten!

Of course, all of this is very real in Momma’s mind. That’s just a little taste of the confusion and disorientation that happens with the progression of Alzheimer’s. Not only is Mom confused about her accommodations, but also about the relationship of people to her.

“Mr. Winquist” and yours truly

Most days, she still knows us. Wayne is often referred to as “Mr. Winquist” – her term of endearment for him. Other days (mostly in the evenings), in her mind, I’m her sister Carolyn. As we look through picture albums or recall stories from her childhood, she tells tales of her youth as if I had been there too, sparing me the details with, “Well, you know. You were there too.”

My sister has been coming every other week or so to stay with Momma for a few days so I can get a little down-time. A few hours before each visit, I remind her that her daughter Vivian is coming. Sometimes she’ll give me a quizzical look and ask, “So, help me remember. Is Vivian my daughter? Or is she your daughter?”

On one of Viv’s recent visits, Momma came out of the bathroom and was looking for her Mom. Rather than remind her that her mother has been deceased for many years, Viv just went along with her and said, “Your Mom is not here right now. Can I help you with something?” Mom replied, “I just need to find my Mom.” I peeked my head out of the laundry room door and waved. Momma spied me and said, “There she is!”

So, in my mother’s mind right now, I’m her mother. That’s okay by me. She took good care of me for many years. Now, in this circle of life, it’s my turn to take good care of her.

 

“So, how many names should I put in the pot?”

The phone rang on Saturday morning. I answered, already knowing it was my dear mother, and I could almost guess what she would ask. She had a hair appointment every Saturday morning and would go grocery shopping on her way home. “So, how many names should I put in the pot?” That was mom’s way of asking us to come over for dinner.

It was our family tradition most Saturday evenings when our children were tweens and teens. Sometimes we’d hop on our bikes and pedal the 3 miles over to my parents’ home. Other times we’d pile the kids and the dogs in our car or mini-van and make the short drive to Mom and Dad’s place. Our Cocker Spaniels would be hanging their heads out the window, long ears flapping in the wind, their little nugget tails a waggin’, sniffing the air, and dancing with excitement when they sensed we were to Grandma’s street. Sometimes we’d purposely drive by the 105th Street turn-off and the dogs (one dog in particular) would cry and whine until we made a U-turn and turned on the right street. Momma would always have a treat for those granddogs…and they knew it. Sometimes just a dog biscuit or two (my dad always lost count of how many dog biscuits he’d toss them), or a little rawhide chew, other times a pig’s ear for each of them (their favorite)!

And Momma always had something delicious for us. Her barbecue spare ribs were fall off the bone scrumptious, and she made a homemade potato salad that became one of her most-requested recipes. She sometimes made a casserole we all liked; usually something she called Yumasetta (said to be an Amish recipe), or a taco-ish dish covered in Frito’s corn chips, or “Hearty Beef N Potato Casserole,” a recipe that was served at a Christmas luncheon at her church in 1986. On a hot summer’s eve, she made this seafood pasta salad that was better than any I have ever had. Oh, and her potato soup. Oh, my! Her creamy potato soup was SO good that our daughter Beth wanted it on her 15th birthday menu – along with crescent rolls (from a can), deviled eggs, and cherry juice!

Sometimes I’d bring a side dish or a dessert, but Momma usually told me I didn’t need to bring a thing. “Just bring yourselves,” she’d say. I think the kids preferred when I didn’t bring dessert because they knew they could count on Grandma having a favorite treat in her freezer – a Klondike ice-cream bar, which can best be described as a huge chunk of ice cream covered in a thick shell of chocolate. And if Grandma was out of ice cream, Grandpa Boyles could be counted on for a cookie (he always kept a stash in a Tupperware by the back door to share with the kids in the neighborhood, who sometimes affectionately called my kind-hearted dad “Cookie Monster.”)

We’d usually just watch a favorite television show or two together. I can’t remember what all we watched, but recall “The Dukes of Hazard” and “Dr. Quinn, Medicine Woman” being part of the line-up at one time or another. I mostly remember the lovely feeling of coming home to the house I grew up in, and being thankful that our children had grandparents close by – something I didn’t have when I was growing up.

I have a few of Momma’s favorite recipes filed away in my recipe box. I can almost duplicate her creamy potato soup, but have never come close to duplicating her potato salad. Nowadays, Momma no longer cooks, as I wrote about in my story, “When the Good Cook Can’t” some time ago.

Yes, the table has definitely turned. Momma now lives with us and enjoys meals at our table. My children are all grown up and have homes and families of their own. Now they pile their own kids in their own mini-vans (no dogs, though) and come over and cook for her too, as they have opportunity. We are so thankful that we can do this for her as she wrestles with memory loss related to Alzheimer’s.

Momma, now it’s our honor and privilege to return the abundant blessings you lovingly showered upon us. May we be as gracious, open-hearted, and generous as you.

The Night I Scolded Momma

I’m sick and tired.

I feel really bad. Not just because I’m truly sick (as in a horrible head cold with dizziness) and tired (as in haven’t had a great night’s sleep in what seems like forever). I feel really bad because last night I scolded Momma and sent her to bed. I actually scolded my Momma. I treated her a bit like she was a little child.

To be honest, she was acting like a little child. Coming up with every childlike excuse in the book as to why she was sitting in the kitchen at 1:00 a.m. She had pulled an all-nighter in the kitchen the night before, with me getting up four or five times to check on her. But tonight, I’d had enough. I needed some rest. I told her, perhaps a little too gruffly, that I was sick and I needed some sleep. I told her that she needed to go to bed so that I could go to bed.

“Well, you go on to bed,” Momma chirped, a little too brightly for 1:00 a.m. “I’m not a child. I’ll go to bed when I am ready.” With that, she picked up a book and feigned reading (she didn’t have her glasses on and there wasn’t enough light on to see what she was reading).

I planted my hands on my hips. “No, Momma. You need to go to bed NOW.”

“I need to go to the bathroom and brush my teeth.” Momma was stalling. She had already done both of those things.

“Okay, Momma. Go ahead. I’ll set your toothbrush up for you, but let’s do it right away so that I can go back to bed and know you’re safely in your own bed.”

Momma continued to stall for what, in my ill state, seemed like an hour. There is just no point in reasoning with someone who lives in an Alzheimer’s world. She doesn’t understand my concern for her safety. She doesn’t realize that I’m afraid she might fall or wander out the front door. She has no idea that she has Alzheimer’s and that she is now suffering from Sundowner’s, a symptom in Alzheimer’s best described as an upset in the internal body clock which makes her mix up her days and nights.

Somewhat exasperated, I scolded, “Momma. You need to go to bed NOW. If you have to pee and brush your teeth, that’s fine. I’ll wait for you in your room.”

A few minutes later, she scootched into her room with her walker. She didn’t stop in the bathroom, so I asked her (with as much gentleness in my voice as I could muster), “Do you need to use the bathroom and brush your teeth?”

“No, Cindie! I’m not a child.” Momma plopped on the bed, obviously mad at me, then slipped her shoes off and pulled her legs up into bed.

“Goodnight, Momma. I love you more than your realize right now. Thank you for going to bed so that I can get some sleep and get to feeling better.”

With that, I turned off her lamp and closed the drapery that serves as her bedroom door, and then took a different route back to the kitchen so I could turn off the light over the kitchen sink, hoping that the darkness would make it less likely for her to be lured back in there a few minutes from now.

Fighting another dizzy spell as I laid my head on my pillows, I pulled the blankets up over my tired body, then laid on my side and watched Momma on the wifi monitor I keep on the nightstand. She wasn’t sleeping. She tossed and turned and I could hear her grumbling. But she was in bed…at least she was in bed. I picked up my phone and clicked on my Bible app and listened to the narrator read from the Psalms until I drifted off to sleep again.

Why do I share this with you?

This is some of the tough stuff that happens when you choose to provide care for someone with Alzheimer’s in your own home. It’s the reason why caregivers need a break from the responsibility from time to time. I’m thankful for the support system I have in my husband, our daughter Beth, our Friday night caregiver Kathryn, our Sunday morning caregiver Kathi, my sister Vivian, and a sprinkling of friends who help out from time to time. Without them, I couldn’t do this.

And I’m thankful this morning that, with Alzheimer’s, last night is forgotten. Momma still loves me.

 

Setting the Caregiving Stage

I love to get my hands and feet dirty. Try as I might, I can’t seem to keep my shoes or gloves on when I garden. I guess I’m a tactile sort of person who enjoys the feeling of the warm earth squishing between my toes or sifting through my fingers. I try my best to make things grow, but know in my heart that very little of it is up to me.

Landscape designer Tish Treherne wrote an article for Sunset magazine that I really enjoyed. Tish wrote about how she designed her personal garden space around their gorgeous waterfront home. She likes to keep things slightly wild looking by “loosely layering unfussy perennials.” I love her garden design philosophy and enjoyed reading her description of how the plants she chose nestle into one another like puzzle pieces to create a seemingly effortless whole. 

I start planning my garden in the dead of Wisconsin’s winter when the first seed catalog comes in the mail. I get out my Sharpie marker and circle the flowers that capture my attention in the catalog pages and dream about where I’d put them in the garden. I get out my garden journal and jot down a few notes about what I’d like to plant, what I want to move, which plants I’d like to dig out, and what I’d like to purchase.

Whether shopping by catalog, or cruising the aisles of my favorite garden centers, I pay attention to the description of each plant, determining whether I have adequate space or light, or whether I’m in the right planting zone. My dear husband fully supports my need for dirt therapy, allowing me to add to my cart whatever little lovely attracts my eye.

Bug-infested Roses

Even with careful planning, planting and faithful watering, not all of my plantings survive. I have lost count of how many failed butterfly bush and clematis vines I have planted. Likewise, each tulip and daffodil bulb I plant in the fall holds the promise of a gorgeous bloom to follow in the spring, but not all of the bulbs I plant make it. Winters can be harsh, Springs too wet or too hot, cute little critters eat my plants and bulbs, disease strikes, insects munch away. Like Tish said in her wonderful article,

“You’re setting the stage as a designer, but you don’t have total control over what’s going to happen.”  ~Tish Treherne

I often draw parallels for life from my garden, and Tish’s philosophy holds true on that front as well. As I seek to take care of my mother’s increasing needs for care, I am just setting the stage as a designer. With the help of our family, my husband and I turned our dining room into a lovely bedroom for her. She has a special spot at our kitchen table where she can watch the birds and view the gardens. We make sure she has meals that are reasonably healthy, treats that make her life enjoyable. I make sure she receives appropriate medical and dental care, and that she is adequately clothed and groomed. We try our best to ensure her safety by putting up baby gates, installing handrails, building half-steps, using video monitoring systems while she sleeps, and making sure someone is with her 24-hours a day.

I can design a stage for her care, but I do not have total control over what’s going to happen. She may take a fall. She will undoubtedly get a urinary tract infection and have hallucinations which will keep her (and us) awake. If this disease takes the usual sad course, she will lose the ability to walk, talk, swallow, toilet herself, or perform even the most basic of personal care. I have absolutely no control over her future. I have no idea what even this day will bring forth. But God does, and He will give me wisdom for the next step of Momma’s life journey…and mine.

In the meanwhile, we will enjoy the flowers that survived, each moment of restful sleep, the birds playing in the fountain, the September breezes, porch-sittin’ days, visits from family and friends, knees that are sorta working today, and all the other beautiful daily benefits that come from God’s storehouse of blessings.

 

Trusting in God When Mountains Crumble

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 I am, why I’m 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.

Source: Trusting in God When Mountains Crumble