The Decline – Barefoot Lily Lady

Becoming a Child Again

Mom is so focused on her coloring. I’ve been sitting at the table with her as she colored for the past few hours. I just stood up to move a bit and she looked up and said in a tone of surprise,
“Oh hi! When did you get here?”
Sad, but sweet. Today I’ve been her mom. When I told her it was time to put her coloring away and get ready for bed, she stalled and pouted just like a child. “But I’m not tired! You always make me quit when I’m having fun!”
Cindie’s Caregiving Journal, February 11, 2018

There are those who wonder why caregiving children speak to their memory-challenged parent like they are a child. Some also believe it to be a bit demeaning to provide child-like things for them to do as activities.

I get the concern. I’ve had that concern in the past too.

Not anymore.

Now that I have journeyed alongside my mother (who had Alzheimer’s), I totally get it.

As Alzheimer’s claimed more and more of her cognitive abilities, it seemed that mom traveled backward in time to a time when she was much younger. Toward the end, she became very childlike. She often thought I was her mom. There was no use in fighting the role reversal—it was part of the disease progression.

Like a child, mom enjoyed coloring. When I first introduced adult coloring books, her coloring was magnificent and her eye for color was impeccable. She stayed within the lines and had the art of “shading” down pat. Now, as I look through her coloring books, I can see the obvious regression in ability. In the beginning, mom would use all of her colors; toward the end, she settled in on yellow and green. In the beginning, mom’s color choices would closely approximate the true color of the object she was coloring. As the disease advanced, the coloring books I purchased for her were simpler, in keeping with her diminishing artistic abilities and instinct for color. Ultimately, in the last few months of her life, much like a child who colors everything in their favorite color, she would color everything yellow or green.

Correspondingly, mom’s behavior changed. She’d have times when she was unhappy about something and would throw a childlike tantrum. Tears, pitiful pouting face, crossed arms and all. Mom reverted to baby-like play on the floor, preferring to crawl about on the floor, rather than tootle around in her wheelchair. Like the child running out into a crowded room butt-naked, inhibitions over inappropriate public behavior goes by the wayside too.

On those days when mom thought I was her mom, I soon learned it was in mom’s best interest if I would just play that role. Putting on the soothing “mom voice” was part of it. Likewise, when encouraging her to do what needed to be done (like changing her clothing), it was necessary to communicate with her as I would with a young child or (sometimes) like a toddler, using what I’ll call “simple speak.”

So, dear reader who has never experienced the role of caregiver, please be gentle and understanding with the caregivers you know. Your caregiving friend is living in an upside-down world juggling sippy-cups, adult-size diapers and discreet diaper bags, mealtime feeding issues, and lack of good sleep. Believe me, your prayerful encouragement and friendship would mean the world to them.

Alzheimer’s: When Harsh Words Fly

I work a few days each week as a baker of all things sweet at a beautiful assisted living and memory care home – the very same place where my dear mom spent her last year on earth. The people who reside here are placed for various needs, most of them needing more help than family can provide with matters related to living life with short-term memory loss. In my short time there as an employee I am getting to know and love each resident, but I do have a few favorites. One of those favorites is as sweet as she is feisty. One minute she can be doling out compliments and kisses, the next she’s telling me to stick my mixer where the sun don’t shine.

But I love her to pieces.

I think she holds a special place in my heart because she reminds me in small ways of my mom (pictured here), who also had some bad days as she wrestled with Alzheimer’s in her later years of life.

In the years before Alzheimer’s, my mom was never one to use foul language; the worst I ever heard come from her mouth when I was a kid was an under her breath, “Shhh-ugar!” Yet, in the throes of the later stages of Alzheimer’s, my mom would occasionally make me blush with her language. If she were in her right mind, she’d be truly embarrassed.

Not long ago my new friend had a really bad day — I knew from the minute I walked in the door that morning that it was going to be a doozy when she began swearing at me for just saying, “Good morning.”

When any of our residents are having a bad day, I can’t really help much, as I’m “just the baker” and not directly involved in resident care. However, there is always one thing I can do. As my hands keep busy at the work of baking desserts, I can pray for those caring for the special needs of the residents. On that morning, I prayed for everyone involved in doing what was best for her, each one doing so with compassion and grace. All the while, I fought back tears for this dear woman who was living out one of my biggest fears for my future. You see, I struggle with the fear that Alzheimer’s may one day strip the filters from my tongue and that I might use uncharacteristically foul and abusive language.

So, how should caregivers deal with the foul language issue in their loved one with dementia? To answer that question, let me share a link to a super-helpful article from Very Well Health which discusses this problem and lists many suggestions. You’ll also find some internal links to explore on related issues: Relationship Between Foul Language and Dementia

My personal go-to tactic is the one in this article called “Redirect and Distract”. Where my mom was concerned, I would say something like, “Are you hungry? Would you like me to fix you a sandwich?” My mom loved sandwiches, so I kept a little stash of halved sandwiches in the fridge.

Other times I would distract her with an activity. I’d just walk away from her angry outburst and grab her coloring books and colored pencils and begin coloring. Nine times out of ten, she’d join me in a few minutes.

Coloring cards Momma received in the mail each week from her friend (and ours) Suzy.

Another thing I did on many occasions was to grab my collection of buttons and pour them out onto a towel on the kitchen table. I’d just quietly start sorting the buttons into color groupings, or line them up in rows. Mom could not resist this little sorting activity. Before long, she’d be calm and would join me.

Sorting buttons was a favorite calm-down activity for my mom

I wrote about these two and several other activities in my post Dementia Friendly Activities. The key thing was for me to be quiet and resist the urge to argue or add defensive words. Talking during one of her outbursts would only add fuel to the war of words raging uncontrollably in her head.

My friend at work has a similar calm-down button: her sweet tooth. I can sometimes redirect her downward spiral by offering her a cookie.

Since I’m the baker, I’ll sometimes say, “I need your help. Could you taste test this for me?” My friend also likes a slice of buttered bread with a cup of milk. Paying attention to what she enjoys and asks for in her calmer moments equips me with ideas for dealing with the tense moments.

While I dread the thought of ever having Alzheimer’s, I do trust the Lord with my future knowing that He will provide what I need should this be in His plan for me. It is my prayer that the Lord will keep my tongue sweet and gracious, and that the “law of kindness” will always be on my tongue. (Proverbs 31:26)

A Belated Christmas Gift

In case you’ve never met him, this is my “little brother” Brad (I previously introduced him here and here). We weren’t particularly close growing up, but I have spent the past six years getting to know him on a level I hope that most siblings will never have to experience.

Brad was a freckle-faced, mischievous kid who had lots of friends, but I knew something was different about him with respect to his ability to learn. He went to a special school for a few years, but my parents never let on to any particulars related to his ‘special education needs’ until one day when I was about 12 years old. I don’t remember what was happening at the time, but Brad was having trouble with his school work and I think my dad sensed my annoyance with my brother over something trivial. I don’t remember Dad’s exact words, but he took me aside and urged me to be kind to my brother and try to help him out because life was harder for him than for most.

We three Boyles kids, Christmas of 1963 (l. to r. Cindie, Vivian & Brad)

I do remember promising my dad that I would try harder to be kind. Little did I know then just what that would entail, but Facebook reminded me earlier this week that six years ago I arrived in Milwaukee to look after my mom who was in the mid-stages of Alzheimer’s and ended up taking my brother to the emergency room at the VA Hospital in Milwaukee. That trip resulted in a series of appointments and a battery of tests, which led to a diagnosis of colon cancer and various cancerous skin issues, in addition to unmanaged diabetes. And so began my opportunity to keep the promise I made to my dad more than 50 years prior ago as I embarked on my ministry of care for my brother, driving him to and from various appointments in treatment for all of these problems. Somewhere along the way it was determined that Brad had experienced some mini-strokes and that he was cognitively impaired – the neurologist called it vascular dementia. It soon became apparent that it would be wise to move both my mom and my brother to live near me

Brad’s room at a nearby nursing home is scheduled for much needed renovation this summer, so the management asked families to help their resident clean out extra items. I stayed for a bit after we returned from Brad’s doctor appointment last week to take care of that. We tackled his nightstand together first, starting with a bag full of unopened cards that people had sent him. There were Easter cards, birthday cards and even a few from Christmas. I opened each of the cards and read them to Brad, reminding him of who people were if he didn’t remember them. Then, I packed up his winter coat and a few items of clothing that he doesn’t like to wear. There were a few t-shirts which were frayed and stained, obviously his favorite shirts to wear, so I took them with me and told him I would purchase new ones.

Someone had gifted Brad with cookies at Christmas. He pointed to the tin on his nightstand (pictured below) and told me he had saved it because he thought I would like it. I don’t know what it was about that simple gesture, but it meant a lot to me that he thought about something I would like. Honestly, even though he had eaten all of the cookies in the tin, it was like a belated Christmas gift.

A Prayer for Grace

It brings me joy when I find a little prayerful note written in my mother’s handwriting. Seeing what was on her heart and mind at certain times of her life gives me insight into the depth of her trust in the Lord.

I recently picked up a little spiral notebook in my stash of things which once belonged to my mom. Giving the pages a quick flipping through, I noticed most of the pages were blank, so I decided to make use of it as my own journal. I thought the journal was blank, but then her handwriting caught my attention on the very last couple of pages.

Let me share with you one of those entries.

Today is March 12, 2016. Life goes on and God has provided. I am so thankful for all who have cared for me.
Jim Meiller – Snow removal; also mow grass.
My caregivers – Cindie and Vivian
Wayne – takes care of my bills. PTL!
And so many more to list.
Lord, I know that I do not have much longer. I ask for grace for these times. It has not been easy, but you have provided for all my needs and so much more. Please give me grace for my remaining time before you call me home.
I do hope Jerry remembers me!
Take care of my family and my friends!!!
So many more but, oh yes, thank you for ice cream!
Charlotte P. Boyles

Looking at the date on her journal entry, I am surprised by her clarity of thought for writing out what was on her heart, as Alzheimer’s had dealt some harsh memory-robbing blows. I recall we were in the midst of packing her belongings and getting ready for her big move at that time. In just over a week, she would leave the place she had called “home” for the past 55 years and move 90 miles away to a little place near me, and I was having trouble with mom unpacking the boxes that I had spent hours packing. Finding her prayer for grace during what was a very stressful time for her, well, it just speaks to my heart about how I can trust God for my future too. Even if it includes Alzheimer’s.

Palliative Care Praises

My friend and I talked recently about palliative care and how it differed from hospice care. I recalled writing a little blog post about this subject, so decided to reblog it today. I hope that it helps my friend and anyone else who is approaching this stage in the care of their loved one. I praise God for leading me to Agrace and for the wonderful palliative and (later) hospice care my dear mom received.

Barefoot Lily Lady

As this mid-stage of Alzheimer’s drags on, Mom is sleeping quite a bit more, not only at night (which I appreciate), but during the day as well – sometimes skippinga meal in lieu of sleep. Unfortunately, her nighttime sleep doesn’t appear to be very restful, as she gets in and out of bed various times throughout the night – sometimes to use the restroom, other times to explore the contents of her purse or her dresser drawer, or watch the real or imaginary happenings going on inside our house or outside of her window.

We have also noticed she has been less content during her awake hours and is more easily agitated. She paces back and forth between her bed and her chair at the kitchen table, never quite settled in either place; never quite sure if she’s going to bed or getting up.

Long ago, when my mother was…

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How Did I Get Here?

A memory from two years ago …

Barefoot Lily Lady

There are many times when I walk into my mom’s room and she has this befuddled look on her face. I watch as her eyes wander slowly around the room, studying each piece of furniture, the window, and the doorways. Her eyes will land on pictures of once familiar people and a blankness has slipped over her eyes like a mask – no light of recognition.

In these moments Mom will often ask,

“How did I get here?”

I no longer answer by explaining, “Well, about two years ago I moved you from your home in Milwaukee so that you could live with me and I could help take care of you.” I don’t tell her she has Alzheimer’s. Unless she specifically asks, we don’t dwell on the fact that she can no longer handle money, make decisions, cook, drive, or take care of herself.

That’s too much information.

The…

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Butterfly Kisses

The final week I spent with Momma is now a blur; the days and nights run together in my head. What I do clearly remember is an overwhelming feeling of gratefulness. Each day and night that I spent with her illuminated the many reasons I had to be so grateful; many of those “reasons” wore scrubs and a nametag. It did not matter if they were a nurse, a personal care or nursing assistant, or owner of BeeHive, it was obvious that each had a role in providing care, and they all loved my Momma.

Keeping vigil at my mom’s bedside during that final week, I had the privilege of watching each one of mom’s amazing caregivers at BeeHive, together with her hospice team, do their best to make this last part of my sweet mom’s earthly journey as comfortable and pain-free as possible. Every few hours they would check to see if she needed to be changed and reposition her to prevent bed sores and to ease her struggle with terminal respiratory secretions. Medications were administered to keep pain under control and help dry up some of those bothersome respiratory secretions. If there was any sign of pain or discomfort, they were on it, adjusting her medications or finding that “sweet spot” in positioning her. Since Momma couldn’t swallow to drink anymore, they used swabs to soothe her parched lips and keep her mouth hydrated and clean.

Even though BeeHive is a busy place, as the caregivers worked with her, they never seemed to be in a rush. Gentleness was in their touch whenever they moved her. Each person involved in mom’s care spoke to her just as if she could hear and respond. As each one left the room after performing daily cares, they left behind a kind word of care and endearment.

It could have been my imagination, but as her body weakened and she slipped into a non-responsive state, I sometimes felt as though she was peeking through almost closed eyes, searching to see if I was there. Otherwise, in all of this, momma gave no real indication that she was aware of anyone being in the room with her. I honestly didn’t know if she could hear me, but I talked to her anyway. Even though Momma was quite hard of hearing, I oftentimes placed my phone on her pillow next to her ear and played her favorite hymns while I sang along with tears playing in the corners of my eyes. When I sensed that she was agitated, I stroked her forehead to soothe and quiet her, tracing her forehead and nose with soft touches, much as she did for me when I was a child. When I could do nothing else, I just held her hand.

On Saturday night, I noticed Momma making kissing sounds. Her eyes were closed, but her head was raised off her pillow and she was definitely kissing the air. Her kisses were insistent, so I thought perhaps she wanted to give her Dolly a kiss. Momma loved that Dolly, taking care of her (and a host of other dolls) as if they were her children. I put Dolly’s cheek to Momma’s lips and Momma gave her little butterfly kisses. I thought that was so sweet, so tucked Dolly back in with Momma.

But Momma kept making kisses. So I put my cheek to Momma’s lips to receive her kisses. Momma kissed my cheek a few times and I kissed hers. Momma stopped kissing and relaxed her head on the pillow.

It was then that I knew those butterfly kisses were for me. My sweet Momma knew I was there and she was trying to give me a goodbye kiss. Perhaps Momma knew that heaven was drawing near and that she would be with Jesus in the morning.

Alzheimer’s: Signs Along the Way

My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.

What signs did you see that made you suspect that your mom was experiencing memory loss?

One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:

Repeating stories multiple times at the dinner table.
Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.

Mummy-wrapped banana peel from Momma’s purse

Asking the same question over and over again.
A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.

Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)

Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
Hiding her checkbooks.
Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
Repeating stories. Oh, I think I already said that.
Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
A diminished desire to attend church or get together with her friends.
Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
Multiple cans of Coke begun, but not finished.

Momma can’t remember she already has a can of soda open.

Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
Inordinate amounts of junk mail.
She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
She kept renewing her magazines, even if she had YEARS left on the subscriptions.
Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
Hiding valuables and claiming they were stolen.
Growing frustration with using a telephone or a once-familiar remote control.
When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).

Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.

Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?

In Search of Billy

Once upon a time, not so very long ago, I arrived at BeeHive to sit with mom during lunch. Momma was able to stay focused on eating if someone was nearby to remind and coach her. As her Alzheimer’s progressed, she had begun missing meals – sometimes only eating one meal a day – so I tried to be there during that time whenever possible. On this particular day, I was running a bit late and most of the residents were eating their dessert.

Not Momma. She had already toodled away from the table in her wheelchair and was calling out, “Billy! Billy! Where are you, Billy?” Now, I didn’t know anyone there by the name of Billy (not even one of her dolls had that name), and had never heard her call out for someone in this unconsolable way. Mom seemed almost frantic to find Billy.

I put my things down near her place at the table, then approached her and asked if I could help. “No! I want Billy!” insisted Momma. “Well, let me help you find him,” I replied. “Can you tell me what he is like?”

Momma seemed glad to have someone help her find Billy. The staff was nearby beginning the cleanup process after lunch, so I asked if any of them knew who Billy was. No one did.

Then, with tears in her eyes, Momma brought me back to the situation at hand and plead, “Please, help me find Billy. He’s my friend and he’s so kind. He helps me.”

That description was all I needed to give me a strong hunch as to the mystery of Billy’s identity. Going with my hunch, I asked one of the gals if Momma had been hanging out with Andy that morning. Why, yes! Andy had paid quite a lot of attention to Momma earlier that morning, strolling with her around the building and helping her with daily cares.

Photo credit: Kathleen Zelinski, BeeHive of Oregon’s Activity Director

Andy is one of the owners of BeeHive of Oregon. Like the other co-owners, Josh and Gina, Andy has more than just money in the business. He puts his caregiving heart in there too.

Andy showed his interest by taking the time to notice the photos I had placed in mom’s room. As he looked them over, he would ask questions about them so he could learn more about my mother’s past – important because Momma was living in the distant past in her mind. Knowing more about a someone’s past is helpful in caring for those with any number of conditions which cause short-term memory loss.

Andy often told me how much he adored my mom. He wanted to know about her and took a genuine interest in hearing stories from her past so he could better understand what made her tick. Though Momma probably didn’t say so, she trusted him and I think she sensed how much Andy loved her.

And Momma loved her ‘Billy’ too.

Falling for Dolly

Momma rested comfortably after Vivian and Jess left, so I decided to go home for a bit that evening to have dinner with Wayne and repack my bag. I knew in my heart that I would be staying with mom until the Lord called her home, so stuffed my backpack with a week’s worth of clean clothing, my Bible, a book, and a few movies to watch. I was just getting in the car to make the 12-minute drive back to BeeHive when I got a call from Kate, one of her sweet caregivers, who was calling to let me know that, weak as mom was, she had somehow managed to get herself out of bed and had fallen once again.

When I arrived a few minutes later, mom was back in bed and resting comfortably. The bump on her forehead from a previous fall had been in the healing stages, but now looked fresh again. Momma was chatty, but more difficult to understand. I did manage to cipher at one point that she was talking about her baby. Dolly was seated across the room in a chair, rather than in her customary spot in bed with her. It was then that I surmised Mom had been attempting to get out of bed earlier so that she could bring her baby to bed with her, but had fallen as a result. I placed Dolly in Momma’s arms and she patted her and spoke soothing words to her for quite some time.

I shared my theory concerning why mom had tried so hard to get out of bed with the staff. We all agreed that Dolly was very real in momma’s mind and that we should make sure Dolly was always in bed where Momma could see her.

I always loved watching my sweet mom tenderly caring for her beloved Dolly (and other dolls and stuffed animals), so I took a little video of Momma interacting with her Dolly that evening. When I would watch her care for Dolly, it seemed as though I had a glimpse of what my mother was like when I was a baby.

I will always treasure this sweet and special memory of Momma and Dolly.