Alzheimer’s – Page 11 – Barefoot Lily Lady

Assisted Living: What to Expect

When one wrestles with the thought of placing a loved one with memory loss into assisted living, many questions come to mind while making that life altering decision. Thankfully, there are many good books related to caring for a loved one with memory loss (and I’ve probably read most of them). If I could only recommend one, it would be Jolene Brackey’s, Creating Moments of Joy. [I wrote a little book review about this book here.]

I love this page. I live this page.

It’s important to have realistic expectations concerning assisted living memory care.

It has been almost four months since we moved Momma into assisted living at BeeHive Homes of Oregon, WI. She has made a great transition – not without its hiccups, but BeeHive is definitely a gift from God for my sweet mother. In these four months I have fallen in love with each resident who lives there with her and each one responsible for her care.

There are 16 rooms at BeeHive. At any given moment you might find my dear mother in any one of them, although she has her favorites. She loves to nap in Carol’s room, enjoys the sunny window in Caroline’s room, and can often be found rearranging pillows and tending to every one else’s babies in her neighbor Kathi’s room.

On any given day, my mom might be wearing her favorite outfit, or might be looking cute as can be in another lady’s pajamas. The other day I noticed mom wearing her nearby neighbor Roy’s watch; she also had his remote control and he had hers. I’m really not sure who has her colored pencil set, it’s been on the lam for a few weeks, but know they’ll turn up some day. She probably put them in someone else’s drawer for safekeeping on one of her daily adventures tooling around in her wheelchair.

Momma is a gatherer. If something is missing from someone else’s room, it can reasonably be assumed Charlotte probably has it for safe-keeping in her purse, or wrapped in a blanket and tucked away in a drawer in her room. Toilet paper is irresistible. An unattended doll or stuffed animal won’t be lonely for long if she can help it. She even managed to pick up an unattended cell phone that belonged to one of the hospice staff. I half-jokingly remind the staff that if something is missing, just check Charlotte’s purse and drawers–it’s probably there.

Only one of these dolls belongs to Momma – but they are all equally cared for and loved. [Photo credit: Kathleen Zelinski]

Slowly, but surely, I’m learning whose stuff belongs to whom (most of it is labeled). I spend the first few minutes of my daily visit returning things she has borrowed and retrieving things she has tucked into places where they don’t belong and returning it to the right place.

One thing is for sure — Momma belongs and is in the right place.

Everyone needs a good neighbor

Not long ago, I pushed Momma in her wheelchair out to the commons area so she would have a change of scenery and perhaps engage with others and be distracted from her current woes. As soon as she saw the other people, she planted her feet so I couldn’t push her any further, then said, “Oh, no! I’m not going there! None of those people like me.”

Just then, I believe, God sent a lovely lady named Lola to gently engage Mom in conversation. After a bit of small talk, Momma asked Lola which room she lived in. Lola pointed to her husband Roy’s room just two doors away and reassuringly patted my mother’s arm and said she was very glad to be Momma’s neighbor.

Thank you, Jesus! Just what Momma needed.

Photo credit: Kathleen Zelinski

Five Minute Friday: Enlarging my World

My world has been relatively small the past few years, staying pretty close to home. Life has revolved very much around taking care of my mother as she battles Alzheimer’s. Over the years, I found myself growing weary and having to stop doing several things I love in order to be able to focus on her ever-increasing needs.

In late March, my sweet momma took up residence in a beautiful assisted living facility devoted to those with memory care needs. I still spend a few hours each day with her, but I can sleep throughout the WHOLE night in my own bed and am no longer fully responsible for her daily care. I’m beginning to feel more rested and able to resume some (but not all) of my former activities and ministries. I can take a little road-trip with my hubby, play in the dirt in my garden, or prepare a Sunday School lesson for the kids at church without interruption. It’s truly a blessing from God’s gracious hand.

With this new freedom, my world will enlarge even more in September when I accompany three of the men from our church (including my hubby) on a teaching trip to India. My responsibility during this trip will be to teach English as a Second Language (ESL) to the students who will be gathering for the purpose of enjoying some seminary-level training. I have never taught ESL, so this will be a huge stretch for me – something which will also enlarge my world as I help this group of adults whose first language is Hindi in their continued quest to become more fluent in their conversational English.

This is my hubby Wayne’s second trip to India (he’s the handsome, white-bearded guy on the lower left of the group photo above), as he traveled with our pastor and another friend on a teaching trip last year. This fall’s trip is a giant leap for me, as I’ve never been out of the country. [Well, unless you count the time when my hubby and I were honeymooning 43 years ago in a rented recreational vehicle and we drove over the Canadian border in the days before a passport was required.] This trip to India will be my first trip overseas, passport, visa, shots, long international flight, and all the cultural adventure that will surely come with that experience.

In the meanwhile, I will need much prayer support as I prepare for my role as a teacher on the other side of the world.

This post is written for the Five Minute Friday Writing Community. Please come join us! https://fiveminutefriday.com/

Wordless Wednesday: Motherhood at 85

Photo Credit: Kathleen Zelinski, BeeHive Activity Director

Alzheimer’s through a Great-Granddaughter’s Eyes

Let me introduce you to Violet. This granddaughter has held my heart for 15 years now and I am quite certain she has a special place for me in her heart too. Any time we spend together is special.

Not only does she love me well, but she also has a special softness in her heart for her memory impaired great-grandmother. Violet goes out of her way to be a bright spot in my mother’s day as often as she is able. Most recently she wrote a few letters to her and asked me to slip them in her purse every now and then so she had something new to read. On other occasions she will come with me to visit her GGma.

Violet and I share in common a love for writing. I love reading what she writes and especially love finding her thoughtful notes sprinkled liberally throughout my house. On a recent visit, Violet picked up a pencil and a notepad and poured out some thoughts on paper about Alzheimer’s. I asked for permission to share them on Barefoot Lily Lady.

Alzheimer’s
By Violet Cynthia Schultz

Family becomes strangers
‘Home’ becomes lost
Books become confusing
Memories become a maze.
Guests become intruders
Flowers become weeds
Shouts become whispers
Old stories are forgotten
making them new again.

Yet the smile of a stranger
can still brighten up the day
Help from a friend becomes a blessing
when you’re lost.
The old photo album
jogs memories new and old.
The surprise intruders
become a highlight of the day.
The countless weeds
spark the old passion of gardening
And the whisper of a voice ensures
comfort, rest, and security.

Feeling Discombobulated

On one recent visit to see Momma at BeeHive, I stopped to chat with one of her bevy of sweet caregivers. With a note of concern in her voice, her nurse informed me that they found mom sitting on the floor twice the day before, but weren’t sure whether she had fallen or if her story of being down there on purpose was the truth. I was neither surprised nor alarmed, as I know my mom’s ambulatory skills are precarious at best. Momma didn’t appear to have any injuries and they were able to help her get back into her wheelchair or bed.

I further learned Momma had not been cooperative this particular morning and had no interest in eating breakfast (a common theme) or coming out of her room. I expressed my thanks for the update then headed toward mom’s room to check on her. Expecting to find her awake and futzing around in her room, I found her lying on her disheveled looking bed and it appeared as though she had been crying. Her face lit up momentarily when she saw me, then the smile abruptly broke into a quivering lip, soon accompanied by a free-fall of tears. I sat on the edge of the bed and rubbed her legs, casually examining them for telltale bruising or other evidence of injury from her suspected falls. Momma lamented she didn’t feel right in her head – something was terribly wrong – that she felt discombobulated. Her right knee was her chief complaint in the pain department making it impossible for her to get out of bed. It did look a little puffy, but there was no bruising that I could discern.

Comforting her as best I could for a few minutes, I thought I should try to get her up and ready for joining her new friends (new every day) for lunch. When my attempts to get her out of bed for lunch failed, her resourceful CNA brought in her lunch, playfully waved the delicious aroma of chicken toward her and cheerfully convinced mom to sit on the edge of her bed and try a few bites. Success! Between bites, mom peppered me with questions about where she was, how she got here, when her parents were coming to get her, what was happening in her head, and other such concerns. I tried all the reassuring answers and diversion tactics I could muster.

When she had consumed about half of her lunch, she wanted to try to get out of bed again. I parked her wheelchair at the end of her bed and came alongside to assist her in standing. Pain prevented her from standing and pivoting to sit; rather, she skootched as close as she could to the wheelchair, then began sliding her bottom off of the bed and plopped onto the chair. All I could do was try to keep her from hitting the floor. Definitely NOT an approved transfer technique, but her unorthodox methods proved successful.

Using her feet to propel herself, Momma navigated herself to her window to watch the birds at the feeder. Pointing at a visiting woodpecker, she proffered, “That looks a little familiar, but everything looks so strange.”

Next, she baby-step shuffled her wheelchair to her nightstand and gazed at her nursing school graduation portrait. Carefully lifting her baby doll up off the bed, she sat her baby in her lap, pointed to the portrait, then whispered in Dolly’s ear, “That lady looks so familiar, but I can’t remember where I know her from. Do you know who she is? I can’t remember her name.”

“I Wish I Could Help”

One recent thread on a Facebook group for dementia caregivers discussed the topic of how to respond to people who say “I wish I could help.” Most have good intentions, but no concrete offers of help. Others are just making polite conversation and really have no intention of helping. One tongue in cheek caregiver response was, “I’m going to start a list to hand them.”

We all laughed.

One longtime caregiver’s contribution to the post was, “I think we should all make our own list to have ready whenever we hear that offer.” Before long, we had created a rather long list. Some of our responses were a bit of a tease, like the caregiver who said, “If you want to bring me a gift, bring Kleenex! My loved one goes through two boxes a day!” We all laughed because an obsession with Kleenex and toilet paper seems to be prevalent in the world of memory loss.

Let me share a few more of the ideas culled from our group effort:

Instead of “let me know if you need anything,” please just show up on my front porch with a good cup of coffee.
Another caregiver added her twist on the impromptu coffee date idea: “Yes, show up on my front porch with a cup of your favorite coffee. Then sit down with my loved one and tell me to get lost for awhile while you drink your cup of coffee.”
Talk to me. Listen to me. I don’t really have someone I can carry on a conversation with anymore.
If you see a need that you can meet, just do it. It will make my day.
One woman’s husband asks her each morning, “What can I do for you TODAY that will make your life easier?”
Send me a card once in awhile (I have a special friend who does this every single week).
Share with me one of your special memories of my loved one. In doing so, you will help me focus on the good and remind me that their life mattered.
Tell me that what I’m doing matters.

One item on the list was my favorite: Ask God to show you how you can help. I promise, He will.

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.

Doll Therapy: Comfort for Momma

“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.