Sundowner’s – Barefoot Lily Lady

Charlotte P. Boyles, RN

Momma was still in bed when I arrived for a visit earlier this week. I learned that she had experienced two nights this week without sleep and it seemed to be catching up with her today. She did NOT want to get out of bed and had already missed breakfast and lunch. The hospice nurse was there visiting and asked me if this sort of thing had happened while I was still caring for her in our home and, if it did, how did we handle it.

I told her that it did happen. It was usually just one night and full day without sleep, but that Momma could sometimes go for 2 or 3 days with little to no sleep. When sleep would finally come, she’d be much like she was today – out cold. I soon learned it was very difficult to awaken her and try to cajole her into doing something she didn’t want to do (like changing clothes or bathing). She would be so groggy and uncooperative. On those days – right or wrong – I would just adjust my schedule to hers.

“So, when she does wake up, what’s she like?” the nurse further queried. I told her she would perk up and she’d be like a different person. The kind and thoughtful Charlotte would replace the grumpier, exhausted Charlotte.

Sure enough, before the hospice nurse left the building, Momma awakened. She was sitting up, got dressed, was chatty and very hungry. Previously verbally unresponsive and only opening her eyes a sliver, she was now bright-eyed and complimenting the nurse on her outfit and telling her how nice her hair looked.

A night and day difference.

I decided that the crisis was over and it was time for me to go home. Momma had already wheeled herself out into the great room and was chatting with one of the other residents. As I exited the building, I threw a glance over my shoulder and saw that my mother had wheeled herself up to another frailer looking resident. There they sat wheelchair to wheelchair with my mother gently stroking the woman’s arm, asking her how she was feeling today and wondering if there was anything she could do to help her feel better.

Charlotte P. Boyles, R.N. was on duty. My heart couldn’t help but swell with love and admiration for my mother, the nurse.

Waking Up on the Wrong Side of the Bed

Sometimes my Momma gets up during the middle of the night and wanders around in her room – typical “sundowning” activity. From my comfy bed, I can keep an eye on her via camera on the monitor I keep on the nightstand. I’ll sleepily watch as she opens and closes drawers, switches the contents of one drawer to another, fiddles with knobs, looks through books and photo albums, and arranges and rearranges things in her purse. Once she is satisfied all is right in her world, she’ll generally go back to bed on her own and I can go back to sleep knowing she is safe. That having been said, if I see her walker on the left side instead of the right side of her bed, I’ll sneak down after she has drifted off to sleep and quietly switch it (and her shoes) over to the opposite side of the bed.

img_1028-1 The familiar idiom, “waking up on the wrong side of the bed” usually refers to someone having a bad day right from the start. In Momma’s world of Alzheimer’s, it is entirely possible to very literally “wake up on the wrong side of the bed.” It’s interesting how a seemingly teeny difference of throwing her legs over the opposite side of the bed when she awakens will cause her day to begin awry.

Waking up on the wrong side of the bed means she sees a different view and doesn’t know where she is at all, and will often cry out, “Where on EARTH am I?”

Waking up on the wrong side of the bed means she won’t know where her shoes are. She’ll fuss and fret and say repeatedly, “Where are my shoes? Who took my shoes?”

A very important door to be able to find.

Waking up on the wrong side of the bed means she will have great difficulty finding her way to the bathroom situated just a few steps away from her bed. Instead of being down the little hallway right in front of her, she’ll have to walk those extra steps around the end of her bed, causing her extra discomfort and pain in her already painful feet and knees, which definitely increases her risk of falling.

Moving her walker to the ‘right side’ of the bed is a very small kindness I can do to make her daily journey with Alzheimer’s a little more familiar, navigable, and comforting.

What small acts of kindness make your loved one’s world a little easier? Please do share in the comments section.

A Woman and Her Purse

In the world of Alzheimer’s, a woman and her purse (and a man and his wallet) aren’t easily parted.

Mom carries her purse everywhere she goes and sleeps with it under her pillow or worn on her shoulder and hugged tightly to her side under her covers.

Rummaging and rifling through the contents of her purse is a favorite Sundowning activity (for more information on Sundowner’s Syndrome, click here). I keep a baby monitor next to my bed and can hear and see her zipping and unzipping her purse at all hours of the night – over and over again. I can see her happily stumbling over the same piece of mail and delighting in reading it out loud as if for the first time.

The contents of her purse may vary a little bit, but I can count on a few things. She’ll probably have five or six combs, her glasses in a familiar blue case, a few colored pencils absconded from her coloring set, her favorite pieces of mail, three or four tubes of lipstick, and Kleenex…wads and wads of Kleenex. And, for good measure, there may even be a roll of toilet paper crammed in there. It’s a harmless security thing. Her purse filled with familiar objects brings her a little peace and reduces anxiety.

Some church and community service groups even provide “rummage bags” or “rummage boxes” for memory challenged residents of local nursing homes, as the act of rummaging through the contents of the bag provides a sense of calmness and occupies them for hours (see related article filled with ideas here).

The paranoia associated with Alzheimer’s causes her to believe with all sincerity that people will try to steal her stuff. So precious is her purse, Mom will hide it to keep its contents safe. Now that she lives with me, I know where her favorite hiding places are located. When she still lived in her apartment or in her own home, sometimes she hid the purse really well. Really, REALLY well. For times like that, we found a handy little device called a Tile which helped us locate her purse using an app on our phone. We give it our highest endorsement and heartily recommend it for anyone dealing with an elderly parent…or someone like me who misplaces her car keys more often than she cares to admit.

Back to purses…

Sometimes my mom is hilarious. This was one of those days. Not long ago, I posted this on Facebook. I hope it brings you a smile too.

Alzheimer’s and Money Worries

One of the things that keeps Momma up at night during her Sundowning episodes is wondering whether she has enough money. She’ll go through her purse countless times in search of cash, a checkbook, a credit card…something. Anything that tells her she is okay financially. Continue reading “Alzheimer’s and Money Worries”

This Too Will Pass

I am fondly remembering when my children were small. So much energy and love went into making sure they were dressed, well fed, clean and safe. I mothered my children back in the days before baby monitors and wifi cameras helped monitor the safety of a sleeping child. I remember hesitating to even walk outside into the backyard to hang my laundry on the clothesline to dry, always wanting to be within listening distance of my sleeping babies.

Mealtimes with my little ones could be fun but, if I turned my back for an instant in our teeny-tiny kitchen, one of my children could spread his meal all over himself and the floor beneath before I could count to three. The other child made highchair sitting into a baby Olympic event going from being seated in her highchair to standing on the tray in record time.

Little stinkers.

I remember making an effort to make bedtime routine, but special. The process of getting ready for bed was the same every night for our two little kiddos. Baths. Jammies. Brush teeth. One favorite book (each child picked a book) and a Bible story. Then tuck each one into bed with plenty of kisses and hugs.

This weary mommy looked forward to bedtime, but our kiddos didn’t always stay in bed. Someone was thirsty, or hungry, or scared, or had to pee. “Can we read ONE more book, Mommy?”

There was always something.

Now, in this circle of life, it’s my sweet mother’s turn. Meal times can be a bit messy and challenging. She cannot be left unattended. And bedtime ritual is just as important for her as it was for my children. Soothing ritual brings a small measure of security to her sometimes frightening world living with memory loss.

I try to get mom to wind up her coloring and activity about an hour before I want to settle in for the night. I get her toothbrush ready for her and make the suggestion that she brush her teeth and use the bathroom. I get her tucked into her bed and say our goodnights, “I love yous,” and turn off the lights.

Before I can settle into a movie with Wayne or a project on my laptop, I hear Mom’s walker scootching and clunking down the hall. In fact, right now, as I write, she’s up again even though she went to bed not more than five minutes ago. This will go on four or five times (sometimes more than that) before she’ll settle in for the night.

Sometimes she’s hungry. Sometimes she’s just confused and wondering what she should be doing now. Other times she’s worried about where her money is or when she will have to move some place else.

It’s always something.

Just like the young mom caring for a little one who just can’t stay in bed, the caregiver of an elderly parent gets weary too. But tonight I’m remembering how sweet it was so many years ago to wearily carry my pajama-clad little ones back to bed, and give them one more hug and one more assurance of my love. As exasperating as it may have been, the very last time I carried each child back to bed came when I wasn’t even aware it was the last time. It so soon passed.

As a daughter and caregiver, I am fully aware I am now doing the same thing for my sweet mother. I can guide her back to her bed, tuck her in once more with my tender assurances of my love for her, knowing full well that the last day will come when I least expect it, and this time with my mom will too soon pass.

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.

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.

Wisdom from the Lips of a Child

The grandkids had all gone home and I had completed my post-grandkid visit tidying up routine: making beds, putting art supplies away, cleaning fingerprints off the glass-top coffee table, sweeping up crumbs from under the table, and the like. Even though it is a lot of work, it was good to have four of my grandchildren keeping me company while my husband was away on a little trip helping our son get his new home’s interior repainted.

Sandwiched in between taking care of my sweet Momma, our day together was filled with coloring to our hearts’ content, painting with my oldest granddaughter, baking, building roads and castles with good old-fashioned blocks, vintage Lite Brite artistry, feeding marbles to toy dinosaurs, sorting through a jar of old buttons and playing “favorites,” and creating fun designs with Perler beads. And for the three grandsons…taking a bath in Grandma’s HUGE bathtub…with bubbles and dinosaurs, of course!

Even cleaning was fun when my granddaughter Violet pitched in to help me clean her Papa’s office. Grandson Charlie even earned a little pocket change by dodging mosquitoes to help me pick raspberries and blueberries.

Though my Momma looks forward to the visits of her great-grandkids, the change in the level of activity always brings a certain level of stress to her Alzheimer’s plagued mind. She worried about a lot of things while they were here. Everything from whether or not they should be outside playing, to wondering what dangers lurk behind the basement door (it’s a playroom for the children). When I had put the boys to bed, she wandered around the house looking out of the windows counting and wondering if everyone was inside yet. But, even with all the stress (exacerbated by her usual sundowning), it was good for her too with coloring projects, crafts, meal-time chatter, and conversations with her great-grands providing a temporary distraction from her own problems.

It was also good for the great-grandchildren. In ways big and small, they contributed to caring for their great-grandmother; from speaking up so that GGma could hear them, to answering the same question five or more times (and not looking annoyed). Great-granddaughter Violet has developed a very keen ability to discern what her GGma needs or wants. On this visit, her great-grandma was in a circular worrisome thought pattern, fretting about what still might need to be accomplished on a to-do list she found on the kitchen table (it was actually MY to-do list). Violet brought out a photo album and placed it in front of her great-grandma, then sat next to her and began to help her page through the book. As GGma talked about the pages, Violet discreetly slipped the to-do list away. A more graceful (and thoughtful) act of redirection could not have been accomplished by someone two or three times Violet’s age.

Unfortunately, Momma’s battle with Alzheimer’s has progressed to the point we can no longer leave her alone (and I don’t have room for all 6 of us in our car – and, even if I did have room, Momma resists leaving the house). For some reason, even though we have fun together, I feel really bad when the grandkids come and we can’t “go” anywhere. But our oldest grandson set me straight when he candidly told me,

“Grandma, I love coming to your house so much. I love it more than all my toys and video games stacked on top of each other!”

My daughter assures me that stacked up against video games, this is a VERY high compliment.

Well, that heart-melting comment from my 8-year-old little love reminded me that, with a little bit of effort, I can still create some memory-making moments with my grandchildren while caring for my sweet mother. Of course root-beer floats for an after-supper treat and pancakes for breakfast didn’t hurt a bit in the ratings department.

Make Me a Blessing

Funny thing happened yesterday.

I was preparing supper in the kitchen while my mom and hubby chatted in the living room, when I overheard Mom say to my husband Wayne, “Are you a patient here too?” Wayne chuckled and responded, “No, I’m just a visitor.”

I had to stifle a laugh. It was so sweet. With that bit of in-house comedy came the realization that Mom’s perception of me as a caregiver (or herself as a “patient”) isn’t far from the truth. I may not have M.D. or R.N. following my name but, the fact remains, I do provide care.

In the course of my day, I was her “nurse” as I managed and dispensed her medications, her nurses aide when I helped her get cleaned up following an accident (then disinfected the bathroom), and her live-in dietitian when I made sure she ate food more nutritious than potato chips and ice-cream. Add to that the daily task of constantly helping my sweet mom with the mysteries of life (e.g. “Where’s my purse?”) or helping her remember the things we take for granted, like where the bathroom and bedroom are located.

When midnight rolled around, I was tuckered out and already in my makeshift bed (mom’s couch), but suspected my care-giving wasn’t quite over for the day when I heard the distinctive sound of mom grunting as she pushed her walker from her bedroom. She called out into the darkened living room, “Cindie, do you know where my toenail clippers are?”

“Yes, mom. Do you need help with something?”

Mom took a seat in her favorite chair just a few feet away, then switched on the tablelamp. Blinking back the abrupt brightness, I could see she was holding one shoe in her hand. Apparently her toenail was bothering her inside of her shoe and she was just not going to get any rest (nor would I) until that problem was remedied.

ToenailClippers — A handy tool for at-home pedicures

Like many elderly people, mom’s nails are very thick. A bit much for her arthritic hands to tackle. Taking my nailcare kit in hand, I sat on the floor with her foot in my lap and became her podiatrist. After clipping her bothersome nail, I trimmed a few others then lotioned her foot.

Momma loved the toenail TLC from her live-in care-giver and soon shuffled off to bed yet another time. Thankfully, she slept for 8 hours straight…and so did I.

Sleep seems sweeter when you know you’ve been a blessing to someone else.

When Time Stands Still

Here’s a little journey in time back to the day we purchased a Dayclox (pictured) to assist Mom in being able to more easily figure out what day or time it is. It was one of our best caregiving purchases ever. There are different versions of this clock available for sale on the web. One that I think would be particularly helpful in this stage of mom’s dementia is the Hurrah HDLC003 – which spells out whether it is morning, afternoon or evening (the abbreviations “a.m.” and “p.m.” are starting to lose their significance). Others have audio features for the vision-impaired. There is even one called “MemRabel 2”, a similar clock which allows the caregiver to program in up to 20 helpful reminders – particularly useful if your loved one is in earlier stages of dementia and spending time on their own. I share this post and links in the hope that it will give ideas for helpful memory aid resources to caregivers who have noticed their loved one struggling with measuring time.

Facebook Journal Entry – Friday, October 16, 2015

SillyHatSecretary — Momma dressed up for Crazy Hat Night in Awana

Time seems to slip through your fingers when you don’t have a schedule filled with meetings, committees, tasks and work routines. Retirees often comment that it is sometimes hard to keep track of the days when you no longer have a job to go to. Momma wasn’t one of those retirees. When Mom took early retirement from her nursing career, she found myriad ways to fill her time with meaningful volunteer activities. Spring Creek Church benefited greatly from mom’s organizational talent. In the words of one appreciative Awana director, she became an “indispensable organizational right arm” in this weekly children’s ministry. Mom and Dad also belonged to Kings Men and Daughters (now known as King’s Class), a life group (an adult Bible fellowship the size of my current church congregation, mind you!) for seniors at her church. Being a friendly, detail oriented person, Mom was perfect for making sure new guests to the class were introduced to others, their contact information was obtained, and that welcome letters were sent out. If you were a “regular” and absent for any length of time from that class, she knew it and would make sure that your caregroup leader noticed too.

Another recipient of Mom’s generous gift of time was Shepherds Ministries, a non-profit ministry in Union Grove, Wisconsin whose goal is to help those with intellectual disabilities “turn disabilities into abilities.” A volunteer group of seniors from Spring Creek would go down on a regular basis to help the organization with mass fundraising and newsletter mailings. Mom could be counted upon to be one of the members of that group. The ministry so touched the heart of my mother that she agreed to play a very special role in the life of one Shepherds resident in particular. Mom became Carolyn’s advocate, stepping into a guardianship role when Carolyn’s family could no longer serve in that capacity. To Mom, Carolyn became almost another daughter, with mom as often as she could attending her special functions, celebrating her birthdays, taking her to doctor appointments, helping her with financial decisions, and all the things you would expect a mom to do.

Time flew by in those days, but there came a day when Momma knew she could no longer reliably do these ministries. One by one, she resigned from the responsibilities of the ministries she loved and reluctantly stepped down from being Carolyn’s advocate. Now, without deadlines and appointments to keep, time often stands still. For a person whose memory is failing, order of days, weeks and months is lost. Over the summer months, we noticed Mom struggling to remember what day it is more often. She was so confused on one day that she found it necessary to walk across the street to visit a kind neighbor and ask for help in knowing what day it is.

See the Dayclox story at http://www.daycloxusa.com

Wayne and I recently purchased something for her that seems to help. It’s a special clock. Mom can see its bold face from her favorite chair. In addition to telling Mom what time it is, it is also her visual cue as to what month and day of the week it is so that she can more effectively keep track of things on her appointment calendar. The clock was a bit pricey, but the investment essentially restored a small measure of dignity.

We realize that not too far down the road, as this wicked disease progresses, time will be lost in Momma’s mind. But for now, we have joy in knowing she has the restored dignity of being able to measure time once again.