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.

“Pssst! Can you help me get out of this place?”

I have SO MUCH to tell you and can’t believe how much time has elapsed since I updated everyone concerning my journey in caring for my mom. I started writing this post the last week of March. Let me do a little back-tracking and a bit of catch-up writing here.

I already told you the story of her dolly here, but SO much has transpired in the past three weeks surrounding that story.


March 18, 2019

Lord willing, one week from today my dear, sweet Momma will be moving out of our home and into her new place at BeeHive Home in Oregon, WI.

If I think about it too long, it brings tears to my eyes. While I had hoped to care for mom here in my home until God chose to call her to her eternal home in heaven, I know in my heart that it is time to place her in a memory care environment where her needs will be better met.  

The first year we cared for Momma in our home, she would often tell people that our home was HER home and that we were living here with her. She’d point out which side of the house was hers and which side was ours. She’d express concern to anyone who’d listen, saying, “They sure do have a lot of stuff.” To her way of thinking, the gardens that I’ve toiled in for the past 20 years were planted by her many years ago. It blessed us to know that she felt “at home” here and was taking ownership, so we just joined her in her version of the story.

As we approach the two year anniversary of her living in our home, Momma looks lost and confused whenever she walks into the bedroom that has been hers all this time. Confusion clouds her fading brown eyes as she sits in her chair at the kitchen table surveying the gardens and wonders where she is and “how the heck” she got here. Her most often asked question is, “When do I get to go home?” Many times we find her sitting near her bedroom window, expectantly watching for her parents to come and pick her up in their car.

Nights are long and many of them are being spent without sleep – for her, or for me.  During those late nights of making and remaking her bed because she has repeatedly removed and folded up her bedding (in preparation for the move she thinks she is making), I find it disturbing to find my compassion is beginning to be replaced by exasperation. I can hear it in my voice and actually feel my blood pressure rising. Sleeping in our comfy bed next to my husband has been replaced by dozing in the chair next to her bed. Even if that were comfortable (and it’s NOT), it’s not particularly restful sleep and definitely not the coveted “restorative sleep” when it’s interrupted a dozen times or more with toileting needs, painful cries, bad dreams, and her shaking me awake to ask me if I’m okay. “You look so sick. I thought I better check on you.”

One year ago, Momma still knew I was her daughter. She knew my name and she knew Wayne’s as well. Now, she can sometimes come up with my name, but usually thinks I’m her mom or sister. Sadly, Momma no longer remembers Wayne’s name. She calls him “that guy” most of the time and thinks he is just a guy on the staff here.

Today Momma beckoned me into her room with a look of desperation and a ‘come-here’ wave of her hand. As I drew near she said in a whispered hiss, “Pssst! Can you get me out of this place?!”

Little does she know that she IS moving into a new home next week. I’m still not sure how (or if) I will tell her. I do know this. I’ve said it before and will say it again. God will give us the wisdom we need when we need it.

Five Minute Friday: Love Without Measure

My daughter gave her grandma a baby doll – a Goodwill find. Except for the fact that its eyes don’t close, the doll baby looks and feels convincingly enough like a real baby. The baby doll is wearing a cute little dress  embellished with sweet, girly-looking smocking – reminiscent of a favorite outfit our daughter wore when she was a itty-bitty girl. 

Why give an 85-year-old woman a doll?

My mother has Alzheimer’s and the list of things which bring her joy grows smaller with each passing week. We had hoped the baby doll (we’ll call her ‘Dolly’) would bring her a measure of joy in the midst of the stress that her life had become – especially the stress she did not yet know she would experience with the next day’s move from our home to her new place in memory care assisted living.

On this final night in our home, Momma sat on her bed with Dolly propped up against her bed pillows. I sat in mom’s comfy chair in the corner of mom’s room and watched the encounter between the new would-be friends. Seemingly oblivious to my presence, Momma talked to Dolly a bit, patting the doll’s dress and stroking her hair, telling her how pretty she looked. She seemed a bit troubled by Dolly’s inability to reciprocate in the conversation, skeptically watching the baby for a response, then looking concerned when none would come.

Just when I thought Momma would give up on Dolly, my sweet mother leaned in real close, gently stroked the baby’s cheeks, then held Dolly’s face between her time-worn hands. Momma then demonstrated the measure of her big heart when she gazed into the unblinking eyes and said something to the baby that astounded me.

“I’ve learned in my lifetime that if you’re trying to have a conversation with someone and they don’t talk back and they just stare at you, it sometimes means that they have been deeply hurt and had trauma in their life.”

Momma gently kissed the baby’s cheek and added, “You’re safe with me.”


This post was brought to you courtesy of Five Minute Friday (hosted by Kate Motaung) and the word “measure.” Writers set a timer for five minutes, free write on the word prompt and publish it on our blog so the whole world (well, our little corner, anyway) can read it! Learn more about the writing challenge at Five Minute Friday.

Date Night for Seniors…with an Unexpected Twist

January in Wisconsin was unusually cold, courtesy of the Polar Vortex. One Friday, when temps had dipped well below zero, my hubby and I were contemplating whether or not we’d cancel our weekly date night. Since we had a caregiver for mom lined up (who was willing to brave the horrible weather), we decided to go ahead with it, but not travel too far from home. Our evening out would include dinner out at a nearby restaurant that we enjoy, then we would do a little grocery shopping (yes, we’re old enough that we sometimes grocery shop on our date nights).

Me and my guy – photo courtesy of our dear friend Don Yantis

After all that senior excitement, we decided to go home and relax while watching a few episodes of one of our favorite whodunit detective shows. Momma hadn’t been feeling well and was not in the best of spirits all day. Expecting to find her in bed and not feeling very social, I smiled when we walked in the door and saw her seated at the kitchen table working a puzzle with her amazing caregiver. Wayne went upstairs to queue up our show so we could hunker down for the evening watching another episode of Psych.

Momma really enjoys her weekly time with Kathryn, always lighting up when she sees her. Kathryn has a special way about her and easily keeps mom engaged with puzzles, coloring, or looking through picture books together. Honestly, I think Kathryn is better at keeping Momma happily engaged than I am.

On this particular night, Momma was engaged, but seemed just a bit frustrated with placing the puzzle pieces. After putting the last grocery item away, I walked past the kitchen table to head upstairs for movie time and noticed mom was starting to slump forward in her chair (Kathryn had noticed too). The color in Momma’s face drained, her hands and arms were tremoring, eyes were fixed, pupils dilated, and she was making sounds, but I could not detect any words. I recognized it as an episode of vasovagal syncope (VVS) much like the one mom had experienced about a month ago.

Briefly, VVS is a fainting episode which happens when the blood pressure takes a nose-dive, usually during periods of agitation, stress or anxiety. Momma had not had a good day and was physically worn out by stomach pain from persnickety bowels and back and forth trips to the bathroom. Shortly before this episode, she had mentioned not feeling well and that she had to go to the bathroom again. Next thing we knew, she was slumped in a classic VVS faint. Episodes of this nature are generally not serious and last a minute or less. I knelt next to her, supporting her with a little sideways hug so she wouldn’t slump to the floor. Unless you see it coming early and can get the individual lying down and feet elevated above the heart, there’s really not a whole lot you can do to circumvent an episode of VVS once it has begun. I decided to pray out loud for mom and had no sooner said ‘Amen’ when she began to stir in recovery.

The rest of the evening is a bit of a blur, but I remember being thankful that Kathryn was there. In addition to the symptoms I already mentioned, Momma loses control of her bladder and bowel during these episodes. Kathryn was so very helpful in getting Momma cleaned up and ready for bed. Once mom was comfy in her bed, Kathryn sat with mom in her bedroom and shooed me off to join Wayne for what was left of our movie night.

I sensed that life as we knew it was taking yet another detour, the path ahead uncertain, and most likely containing many twists and turns. How grateful I am to have the calm assurance that Someone is traveling with us, leading each and every step of the way.

What Splashes Out of My Cup?

Lest anyone who regularly visits ‘Barefoot Lily Lady’ think that I’m living in an Alzheimer’s caregiving utopia where we are always sweet to one another and I always execute Pinterest-worthy caregiving ideas at every opportunity, let me share a slice of reality.

If you had a little window into our world, yesterday wasn’t pretty. And today I wasn’t exactly setting the best example either.

The fact is, I make mistakes in caring for her daily.

Let me confess that I am sometimes not very kind and respectful in my dealings with her – especially in the wee hours of the morning or after a night (or several nights) with little to no sleep.

Right now, as I am composing this post, I am viewing her via the camera in her room and she is ripping her blanket off the bed. I don’t think I have fingers and toes left to count the number of times I have put her bedding back in place today so that she can be warm and cozy. This gathering behavior is common in this later stage of Alzheimer’s where they derive pleasure from manipulating and touching things.  (Here is a very helpful summary of what renowned Alzheimer’s expert, Teepa Snow, calls the “Gem Stages” of Alzheimer’s. My mom is “Amber,” heading into “Ruby” territory. You can request a free DVD or download on this subject on this page.)

The truth about myself is, I often hear my tired and groggy self barking out requests like a drill sergeant giving orders. Last night it was “Please STOP taking your blankets off the bed!” The “please” was moot given my obviously frustrated (and angry) tone of voice. I sometimes forget that the truth about Momma is that she just does not understand what she is doing and she cannot stop this tactile behavior.  Alzheimer’s has eaten away the part of her brain which helps her understand my words and discern how to implement any instructions I give her.

Every day I am as sad for her obvious anxiety and anguish over knowing something is wrong with her brain as I am frustrated with her inability to follow simple instructions.  In those times of frustration, I am sometimes mortified by what comes splashing out of me. As I whipped the blankets off of the end of the bed for the umpteenth time, it certainly wasn’t godliness, love, or the Word of God splashing all around me when life’s cup was jostled.

Today, as I reacted in frustration, God brought to mind a lesson one of my Awana teachers gave years ago (MANY years ago). I am recalling her poignant illustration for life. Our Bible teacher entered the room carrying a cup filled to the brim. Each step was taken slowly and carefully so as not to spill a drop. Just as she reached the front of the room, another teacher abruptly stood up and bumped our Bible teacher’s arm, sending the beverage splashing all over those seated nearby. Yes, it was all staged, but the teacher used that moment to remind us that water came out of her cup. Not coffee. Not soda. Not milk. Water. And the reason that water came out of her cup when she was bumped was because she had put water into her cup. My teacher used that teachable moment to help me understand that if I want godliness to splash out of me when I get bumped in life, then I need to grow in Christ by spending time in prayer and in His Word.

When the bumps of life come along, what spills out of me? 

Lord, please help me take time to fill my cup to the brim with your Word. When Momma bumps me next time, may she be splashed with your compassion in my attitude, loving-kindness in my actions, joyfulness in my countenance, and grace in my words. 

My Mother, My Friend

Momma and Me – a favorite picture

Momma and I sat in her bedroom talking tonight. I couldn’t help but notice she was being extra sweet and using the tone of voice one sometimes reserves for meeting a new friend. As I helped her get ready for bed she eyed me keenly, then said, “I don’t believe I know your name.”

I moved a little closer to my sweet mom and then replied, “My name is Cindie. What is your name?”

“Well, I’m Charlotte. I’ve always been Charlotte,” Momma replied matter of factly as she flashed one of her lovely smiles.

Putting my hand atop hers, I gazed into her brown eyes and proffered, “Pleased to meet you, Charlotte.”

“It’s nice to meet you too, dear.”

I’ve sort of dreaded this day, knowing Alzheimer’s would eventually snatch away my identity from her brain. I imagined that I would be utterly and completely heartbroken. Oddly enough, I wasn’t. For some reason it didn’t sting as much as I thought it would.

Today I wasn’t the daughter, as much as I was a new friend helping another friend.

Where?

Late to the party, but I am joining (on a Monday) the Five Minute Friday writing community, hosted by Kate Motaung, for our weekly writing adventure. Please click here to learn about Five Minute Friday. This week’s prompt is, “Where.”

Where Am I?

Momma asks this question every single day. Every. Single. Day.

I usually answer, “You’re at my house, Momma.” She will then peer about the room with a furrowed expression, and say, “Where?”


My sweet mother is hard of hearing, so I often must repeat what I said. However, it really does no good to explain to Momma where she is or why she’s here. But I do anyway. While she will soon forget, and it really doesn’t matter to her, it matters to me. When I tell Momma that she is here because I love her and want to take care of her, I need to hear myself say that even more than she does. In saying it out loud, I am reaffirming my purpose in my heart.

She will ask again. And again. And again. Each time as though it were the first. It’s at times such as this when I must I remind myself that Momma truly feels lost.

“Where is my purse?”

Where is my money?

“Where do I buy food?”

“Where is the bathroom?”

“Where are the kids?”

“Where are my shoes?”

These, and so many other “where” questions lurk in the worry corner of her mind. Lately, one of her most frequently asked questions is

“Where is my family?”

When she asks this question, she’s really not thinking about me, or her other children, or even her husband. Momma wonders when her parents are going to come and get her and take her home. It accomplishes nothing telling her that they’re already in heaven. If I do that, she stews and is angry that no one told her that they died. Instead, I say, “They’re not going to be able to come today.” Then, I answer her question with my own question, “So, what was your favorite memory with your Dad?” I absolutely love it when she reaches way far back into her cache of childhood memories and pulls out a special one.

While it is heartbreaking to hear Momma struggle with all of the where’s in life right now, I know she has a hope for a future “where.” A place where every tear will be wiped away, every worry and fear erased, and where pain and earthly sorrow will be gone forevermore. Momma is looking forward to her heavenly home – where no more memories will be lost to Alzheimer’s.