Alzheimer’s – Page 19 – Barefoot Lily Lady

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 and granddaughter Violet, 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.

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.

Intruders in the Night

“This is Charlotte Boyles! I need help!”

That was the 4-something a.m. frantic call of Momma, who had spent all night keeping an eye on the intruders in our kitchen. My sister Vivian, on overnight “mom duty” at the time, answered from her upstairs bedroom, “I’m coming Mom!” Vivian listened to Mom’s report of suspicious activity coming from the kitchen, attempting to assure her that all was well and our home was secure. Mom was convinced beyond any shadow of doubt that there were thieves hiding in the kitchen’s pantry; she had seen them with her own eyes and had heard what they were saying. Vivian did a walk-through of the kitchen, opening and closing the pantry cabinetry and its swing-out interior doors to check inside. Nothing unusual there, but Momma still believed ‘they’ were here hiding in there somewhere.

Momma said she had a phone in her purse, and she wanted Vivian to call the police. The phone was actually the remote control for the TV. She had other emergency items packed in her purse…just in case, including a pair of scissors she would use if she had to jab her way to safety. Vivian escorted our frightened Momma back to her room, closing the draperies on the windows and doors. She stayed in the chair beside her, bringing an extra measure of security.

During all of this excitement, I slept peacefully in my bed upstairs. It was nice to have my sister on duty for this one. Both my husband and my bleary-eyed, sleep-deprived sister told me all about the adventure when I woke up.

My brother had a dental surgery appointment that morning, so I would be busy taking him to and from that appointment. While I waited for him in the surgeon’s waiting room, I made arrangements over the phone with mom’s doctor to have her urine tested to check for urinary tract infection, the usual cause for hallucinations of this magnitude. Sure enough, a few hours later, the doctor’s nurse called with the results and to let me know they had called in a prescription for me to pick up at my pharmacy.

Sleep should be less eventful for Momma in a day or two. I hope.

This pretty mug usually contains coffee…but always holds a memory of my dear friend Melinda.

I try to look for “joy” in the midst of these sometimes challenging caregiving days. Admittedly, it’s sometimes hard to find the joy on days like this. But it was there nestled in something my sister showed me later in the day. She said, “Oh, Mom had this in her purse too. She wanted to save it from the robbers for you.” Viv held out a coffee mug. Not just any coffee mug. Momma had commented on the beauty of this particular mug a few days prior. I had told her it was a gift from a very special friend. As I took the Polish pottery mug from my sister’s hand, I was astounded that my mother would remember that this mug was so special to me. And even more flabbergasted that she would seek to save it from the very real (to her) robbers in our home.

My sweet Momma.

Honoring Your Parents: Nursing Home or Your Home?

Caring for my Momma in our home was a relatively easy decision, although the path toward making that decision was anything but as it took many twists and turns along the way. From the earliest days of traveling back and forth between Fitchburg and Milwaukee, to moving her closer to us, God has always been faithful in shedding light on the next step we need to take in our caregiving journey.

At first, we wanted to make an addition on our home for her – a first floor granny suite. Our local senior center’s social worker, along with our elder care law attorney, both agreed that this sort of building project was an appropriate use of her financial resources. Should we ever have to “spend down” her resources in order to satisfy Medicaid guidelines, they assured us that the expense would be allowable and justifiable. So, we did a little homework by getting an estimate for making an accessible one-bedroom plus a bath addition. To say we experienced “sticker shock” would be an understatement.

I was disappointed. Very disappointed. I cried…a lot.

Having nixed the expensive addition idea, we decided that keeping Momma in her nearby senior apartment under our close supervision was still the best option. With the assistance of family, an occasional friend, 11 hours of professional caregiving a week, and well-placed wi-fi cameras, we made it work. Then, about five months into this arrangement, a recurrent battle with a urinary tract infection resulted in hallucinations, alarming behavior, and plenty of evidence that Momma needed more care.

It seemed impossible to keep her at our house. So many questions and not enough answers. Where would she sleep? Our bedrooms were on the second floor. What if she wanders in the middle of the night? A sunken-living room became a potential fall hazard. How would she bathe? We only had a small half-bath on the first floor; it would barely be walker-assisted navigable.

There were just too many obstacles, so I moved in with her to help with daily needs.

moms room — Our dining room turned bedroom

Well, after 8 months of that, Momma took an ambulance ride to a nearby hospital and life changed once again. As I stayed with her in her hospital room, painfully aware that she couldn’t go back to her apartment, I prayerfully turned the various options over in my heart and mind. My husband was doing the same thing. When we sat down to chat about it, we realized we were on the same page. We were going to make room for her in our home. We would make it work by turning our dining room into a bedroom for her. You can read more about that here.

As I continue to blog and share my journey in caring for my mother, I am learning that I am not alone in making difficult decisions related to caring for an aging parent. I have a number of friends who are caring for one or both parents. Some have decided that their loved one would receive better care in a retirement home, assisted living, or skilled nursing facility. I support them in that decision, knowing it was reached prayerfully and with great deliberation.

As a daughter seeking to provide compassionate and God-honoring care for my mother in my home, I found the biblical insight of a podcast I listened to today to be very helpful. The realization that I may need to make a decision in the future that would mean my mother would no longer be cared for in our home becomes more intense with each day that passes. I thought I’d share the link to Desiring God Ministry’s “Ask Pastor John” series on the subject of “Retirement Homes and Caring for Aging Parents.” The information he shared confirmed in my heart and mind that I am doing the right thing for the right purposes and, should her needs change, I will not be dishonoring my mom by placing her in a facility where she will receive appropriate care.

I encourage you to click on the link above to access the podcast, but let me leave you, dear reader, with a tiny bit that was especially encouraging to me.

Are we ready to make sacrifices for our parents? Or are we resentful that they are becoming a burden? That’s the real test. All of this may or may not mean that the parents come to live with us or near us. There are innumerable variables that make one situation right for one family and another situation right for another.

After Midnight Search

Sometimes life is just clearer in retrospect.

I know now that I should have responded to the video monitor’s prompting much sooner. Perhaps I would have been able to get more sleep if I had gone to Mom’s mental rescue sooner. It was after midnight, and Momma was having yet another bad night struggling with sundowning. I watched and listened in on the monitor as she yanked the chain on her bedside lamp and sat up in bed talking to herself. Nothing new; the same questions she always asks – those questions that never go away, even with an answer. I heard the familiar “zip” of her purse as she went through the contents of her purse over and over again. Between each examination of the contents, she would carefully hide the purse beneath her bed sheets. Then, in delighted surprise moments later, “find” the purse and go through the unzip and search motions again.

In the wee hours of the morning she decided to get out of bed. I pushed my head deeper into my pillow and watched from my own bed via the video monitor as she “furniture-walked” without her walker, opening and closing each drawer in her room, rifling through the contents and rearranging everything to her liking. She seemed to be looking for something. Momma was safe enough, just restless and confused. She left the room twice to use the bathroom, but always came back to her bed promptly.

I felt guilty just lying there watching, but I felt utterly exhausted and was in a bit of pain. You know that feeling you have in your leg after a middle of the night leg cramp? Well, I haven’t had a muscle spasm, but I’ve been having that type of “after pain” in my right leg all day. Add in a brewing migraine headache and a mom who just won’t go to sleep, and you have an equation that equals not enough sleep.

At two thirty, I got up to take some more ibuprofen, then drifted off into a state of semi-sleep, still listening, still peeking to see what Momma was up to. By four in the morning the tone in her voice changed to one of frantic agitation, so I made my way down to her bedroom to see if I could help, or at least redirect, so we could both get some rest.

Not wanting to startle her, I flipped on the hallway light so she would see me coming, rather than just have me appear out of nowhere in her room.

Bleary-eyed, I said in my loudest sleepy voice, “Momma, you really need to get some sleep.”

“Well, I’m not going to bed until I figure out who the guy in this picture is.” Momma held out a photo she normally carries in her purse. It was a picture of her with my Dad. I told her, “Well, that is you and Dad.” I could see her beginning to process that information and quickly realized that she was processing the word “dad” and couldn’t make the transition in her brain from my dad to her husband. I added, “Momma, that is your husband, Jerry.”

“Oh, Jerry Robert! Well, now that I know that, I can go to bed,” declared my sweet Momma as she crawled into her bed and nestled her weary from wondering head into the pillows I had fluffed for her.

It was a little disheartening to know that she was struggling to remember her husband’s name, and that I had let her struggle with that search for so many hours, rather than helping her fill in that piece of information so she could feel more settled. How scary that must have been for her.

I sleepily climbed the stairs and went back to my own bed with a prayer in my heart for Momma and me. This time, sleep came easily. Four and one-half hours of sweet sleep.

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 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.

Source: Trusting in God When Mountains Crumble

Fidelity Viewpoint – Managing Cognitive Decline

This is a helpful reminder for those who are helping family members with cognitive challenges and for those of us who might start to struggle at some point in the future. I am thankful that my wife’s mother recognized that she needed help and then accepted help. Her financial “advisors” were not doing a good job and they were charging her for the work they were doing. We made changes together while she was still able to make decisions regarding her future. Now she is no longer able to do that. She was wise to act when she could and set in place the right legal documents with her attorney’s help.

Read this article for more helpful information:

Managing cognitive decline

Life: Just a Few Handbreadths

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”

Junk Mail Queen

Wayne and I would encourage everyone with an elderly family member to keep a close watch on their loved one’s mailbox (and checkbook and credit card statements). This world is so full of organizations unscrupulously preying on the heartstrings of the elderly and frail, many of whom are feeble of mind and unable to understand the ramifications of the checks they write or the information they provide.

I’m taking a moment today to reshare this Facebook note I previously published on July 10, 2016. As you know, since publishing this a little over a year ago, we have moved my mother in with us and have a much better handle on what mail she sees, but my heart still goes out to all of those elderly victims of junk mail abuse. Please click on over to my blog to read (or re-read).

Continue reading “Junk Mail Queen”

Alzheimer’s: It’s not “a walk in the park”

a walk in the park

something that is very easy to do, and usually pleasant:

He’s used to hard physical work – this is a walk in the park to him. (Cambridge Advanced Learners Dictionary and Thesaurus)

Momma and I took a walk in the park at the end of my block today. Actually, I did the walking as I pushed her in a wheelchair through the park, around a little pond, past a Splash Pad play area, and home again. I tried to make it interesting as I pointed out various trees, flowers and critters along the way. Though she enjoyed it (especially seeing the children joyfully playing at the Splash Pad), the walk was peppered with worry and fretful questions.

Continue reading “Alzheimer’s: It’s not “a walk in the park””