At my sort-of-annual physical, my doctor asked me questions related to my caregiving responsibilities, which led to questions related to my mom’s diagnosis of Alzheimer’s. One of those questions was, “Does your mom still know who you are?” It’s a good question – one that is a little hard to answer. I usually start with, “Yes. And no.”
Most days I think she knows that I am family. Her face still lights up when she sees me. She knows that I love her. I don’t believe she usually thinks of me as her daughter though, as she usually refers to me as her mom, and every now and again her sister. Other times (this is my favorite), her best friend. Last week, though, she came up with an entirely new one that tickled my funny-bone a bit.
Mom’s hospice nurse was giving me an update when my sweet mom wheeled herself up to where we were seated and apparently decided she had better make some polite introductions. Speaking to her nurse she said, “This is Cindie. She’s my longtime neighbor.” Of course, her nurse knew the truth of the matter, so we both just smiled and agreed with my mom. Mom reached for my hand and brought it closer to her, then placed her hand over mine and said, “Right? We’ve known each other forever. We go waa-aay back, don’t we?”
So stinkin’ sweet.
“Yes, Charlotte. We go WAA-AAY back.” With a twinkle in my eye I added, “In fact, I think I’ve known you my WHOLE life!”
After lunch today, Mom’s sweet caregiver Nicole gently applied pain cream to mom’s painful knees. I had been busy putting things away in Mom’s room and returning things that she had gathered from other rooms. As soon as Mom saw me approach, her eyes lit up with gratefulness that I was there. Nicole asked Mom who I was, to which Mom replied, “It’s her.” Pressing her a little more, Nicole gently said, “What’s her name? Could you introduce me to her?” Momma thought for a few seconds, but couldn’t. Nicole quickly restored her dignity by saying, “Oh, yes! I remember! You told me she’s your daughter and her name is Cindie!” Momma nodded and smiled.
After a bit of small talk, Momma wanted to take a walk – which means tooling around the building in her wheelchair. I followed behind, sometimes holding onto her wheelchair. At one point she reached back and put her hand on top of mine and said, “I’m just making sure you’re still here.”
My car ‘dings’ a gentle reminder when it needs refueled within the next 50 miles. My hubby usually does this for me, but today I’ll need to care for this task myself because I’ve ignored the dings a little too long.
My Dad had always filled Mom’s gas tank too. When Dad knew he was losing his battle with cancer, that’s one of many things he taught my mom how to do. She tried a few times after he left for heaven, but then found a gas station that would send an attendant out to pump the gas for her for just a few cents more per gallon. My brother Brad thought it was silly to pay extra, so he tried to show her how to pump gas too. Mom just couldn’t remember the steps. Brad didn’t have his own wheels anymore, so didn’t mind filling the tank for her so he could buy himself a cup of decent coffee, a donut and a pack of smokes.
Today I confidently pulled up to the gas pump to fill my own tank and was happy to remember this recently learned factoid: there’s a little left or right arrow next to the gas pump symbol on your dashboard’s fuel gauge – it tells you which side of the car your gas cap is on. I would never have to turn around and pull up on the other side of the pump again. Cool, huh?
My glib confidence came to a screeching halt when I reached for my credit card. Now, I only carry two credit cards, yet I was stumped. “Hmmmm, I could text Wayne and ask him.” But that would be embarrassing. He has reminded me time and time again which one to use to purchase gasoline. How could I admit that I didn’t remember again?
I used to keep a reminder sticky note on the card, but that had fallen off somewhere along the way. After a few minutes of inner debate, I chose one of the cards and got out of the car. It had been so long since I pumped gas I had to read the instructions on the pump. Twice. I felt the eyes of the kid at pump #3 watching me, trying to figure out if he should assist the confused lady at pump #4. I felt embarrassed.
Was this how my mom felt when she knew she was forgetting things?
I pumped the gas and printed the receipt for my hubby’s use in updating our budget spreadsheet, then headed to visit my mom. Hot tears overwhelmed me as I drove those 9.9 miles. I cried because I was pretty sure I had guessed wrong on the credit card. I cried because I now understood how helpless Momma felt. Mostly though, I cried because forgetting things scares me. I’m walking this road of memory loss with my mom and I know it’s hard (and sometimes harder) on the one who is the caregiver. It truly grieves my heart to think that my husband, daughter or son, or a grandchild may walk this road with me some day.
I sat in the parking lot of mom’s assisted living facility and blotted my tears before heading in to see her. My heart smiled as Mom exclaimed a little yelp of joy when she saw me, and even told the friends seated at her lunch table, “See that lady there? She’s my best friend.”
After that heartwarming visit, I made a quick stop at a nearby gas station to buy a cup of coffee, then headed another block or so to the nursing home where my brother resides to visit a bit and bring him a cup of his favorite coffee. He was sleeping, so I left his coffee on his nightstand and headed home to get busy on my laundry. When I arrived home I gave Wayne the day’s receipts and was bummed to learn that, yes, I used the wrong credit card for the gas.
Alzheimer’s is a frighteningly hard path in life, but my walk alongside Momma has also given me firsthand experience seeing how God walks with us each and every step of this road paved with memory loss. While an underlying concern of personally having to experience this disease is always present, I have an even greater confidence God will give those I love much wisdom in walking alongside me if Alzheimer’s is ever my future.
In the meantime, I’m going to smile, grab my Sharpie marker, and write “GAS” in great big letters on my credit card as a visual reminder for the next fill-up.
Hubby asked me earlier this year if I wanted to travel with him to India where he and two other men from our church will be serving in a teaching capacity (I wrote a little more about that in Enlarging My World). I don’t think I answered right away, as I had just placed my mother in assisted living memory care. But there was definitely a tug of willingness and a sincere longing in my heart to travel with him and see firsthand this ministry.
After prayer about the ‘what-if’s’ related to mom’s care while I’m away, I decided to go. God had put the willingness in my heart. Momma was, is, and will always be in God’s very capable hands.
As soon as I said yes, I learned there was a job for me to do. I would be teaching English as a Second Language (ESL). I’ve been busy preparing for that ministry from the moment I learned what my responsibilities would be. There’s a passport to be obtained (check!), immunizations to be received (done!), shopping for appropriate clothing (dragging my feet on that one), and reading nearly every library book I can get my hands on related to ESL. Most days you’ll find me listening to experienced ESL teachers share their teaching tips on YouTube.
Even with this preparation, I have felt for a few weeks now like I’m spinning my wheels. My foot is on the gas, but I’m getting nowhere, and digging myself into a rut of negative thinking. When I find a great idea and try to incorporate it into a lesson plan, ten reasons why it won’t work pop up in my mind.
I have five lessons to teach while I’m there. Five hours to give the students a better grasp of conversational English. Five lessons and five hours — that’s all. I want to make them count.
I’m finding myself melting into a puddle of anxiousness as I wrestle with what to say, what to teach, and how to do this thing I’ve never done before. This wrestling match has driven me to spend more time praying about this ministry opportunity. I know that all of my willingness and preparation in the world won’t matter one iota if the plans that I’m making are my plans alone. I have been reminded once again that my heart must be willing to seek and rely upon the Lord’s wisdom and guidance.
Here I am, Lord. Please take my willingness to serve You and guide my steps of preparation in the way I should go. Direct my paths to the resources that will be helpful. Shield my heart and mind from that which discourages. Keep my mind focused on what you want me to teach. Your will, not mine.
Interesting how, once I released my tight grip on what and how to teach this class, the Lord directed my steps by allowing me to find the teacher’s edition of the English Grammar and Composition book I had loved using when I home-schooled my daughter eons ago. I thought the book was long since given away, but the Lord knew it was going to be helpful in the future.
Although I’m a little late to thelink up, this post is inspired by the writing community at Five Minute Friday. Each participant writes for just 5 minutes on a one-word prompt – last week’s prompt being “willing.”
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 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.
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.
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.”
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.
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.
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.