The past few days Momma has been paging through the little book of remembrance prepared for her by the funeral home that oversaw my Dad’s funeral arrangements in 2008. While I was preparing breakfast for her this morning, she looked up at me from her place at the kitchen table, tipped the book toward me as she pointed to a picture and said, “Is this how Jerry looked?”
I leaned over the kitchen counter a bit and looked at the page. “Yes, that’s Dad. He’s very handsome, isn’t he?”
“I don’t remember him looking like this.” It was a great picture of Dad, so I wasn’t sure what to say in response. I decided I should gently inquire, “How do you remember him looking?”
My heart should have been ready for her answer. But it wasn’t.
Tapping her temple as if trying to jog a stuck thought loose, with a heaving sigh and disheartened look she added, “I can’t remember him at all. I mean, I can’t bring him up in my mind anymore.”
I quickly swiped the tears stinging at the corners of my eyes, and then mom added, “Really, I can’t. And it’s really terrible when you can’t remember something you know you’re supposed to, and feels even worse when you can’t remember someone you loved.”
As a caregiver and a daughter, I would like to be able to help Momma create new memories to make the ones that are disappearing less painful. The sad truth is, this disease called Alzheimer’s makes it impossible for her to remember whatever fun thing we do, or pleasant conversation we have today. But, by God’s grace, I will continue to do my best to help Momma resurrect good memories and create new memories to enjoy, if even for a moment.
Lately, my sweet mother has been more than a bit confused about her living accommodations, referring to our home as “this facility” and “this place.” Not long ago, she swept her hand out in gesture as if encompassing her living space and said, “Are you the one in charge of this place?” I told her yes it was our home and that Wayne and I both welcome her to live here. “Oh,” she replied, “are my meals and laundry included?” I assured her that they were. To which she replied, “Well, they haven’t fed me all day, and I think they’re stealing my laundry. I can’t find it anywhere.”
Not long ago, she was telling Wayne that “someone who works here” had given her some pills. She wasn’t sure who it was, but figured they knew what they were doing, so she took them. It was Tylenol, and it was me giving them to her just moments ago. Oh, and the “people who clean this place” and do the gardening around here just aren’t doing their job. The floors are always dusty. The gardens have so many weeds. “You should talk to them,” she insists.
I can watch Momma’s nighttime activity on a WiFi video monitor that sits on my nightstand. That’s a blessing because I know when she needs something…and a curse because sleep is interrupted quite often. On a few occasions, I’ve come down in the middle of the night to check on Momma because I could see on my monitor that she was crying. Sometimes it’s just confusion about where she is, but oftentimes it is her worrying about how she is going to pay for this place when she can no longer work and earn money. She’ll sometimes tell me that “they” are going to kick her out when her money runs out. On those occasions, I’ll sit with her for awhile and reassure her that she is loved, that she is retired and has plenty of funds, and that we will always take care of her no matter what.
Momma can make you smile with her wild tales about how she came to live here. On Saturday, a friend from church and her two young daughters spent the morning with Momma so that I could attend a Bible Conference with my husband. They had a delightful time, but, oh, the stories Momma told them while I was away. She enjoyed telling how this house was hers and that she shared it with us, describing how we had divided it up into her side and our side. And, of course, she had planted the gardens, adding to them over the years. (Mind you, she has only lived here since May!) She even shared with the girls that she had made her three blue flower pots when she was in kindergarten!
Of course, all of this is very real in Momma’s mind. That’s just a little taste of the confusion and disorientation that happens with the progression of Alzheimer’s. Not only is Mom confused about her accommodations, but also about the relationship of people to her.
Most days, she still knows us. Wayne is often referred to as “Mr. Winquist” – her term of endearment for him. Other days (mostly in the evenings), in her mind, I’m her sister Carolyn. As we look through picture albums or recall stories from her childhood, she tells tales of her youth as if I had been there too, sparing me the details with, “Well, you know. You were there too.”
My sister has been coming every other week or so to stay with Momma for a few days so I can get a little down-time. A few hours before each visit, I remind her that her daughter Vivian is coming. Sometimes she’ll give me a quizzical look and ask, “So, help me remember. Is Vivian my daughter? Or is she your daughter?”
On one of Viv’s recent visits, Momma came out of the bathroom and was looking for her Mom. Rather than remind her that her mother has been deceased for many years, Viv just went along with her and said, “Your Mom is not here right now. Can I help you with something?” Mom replied, “I just need to find my Mom.” I peeked my head out of the laundry room door and waved. Momma spied me and said, “There she is!”
So, in my mother’s mind right now, I’m her mother. That’s okay by me. She took good care of me for many years. Now, in this circle of life, it’s my turn to take good care of her.
This morning Momma emerged from her room carrying a photograph and a ballpoint pen. She had an all too familiar look of confusion on her face as she shuffled walker-less to her place at the kitchen table. As she gingerly turned herself and plopped hard in her chair she lamented, “I just can’t remember anything today. What day it is, what time it is, who I am, why I’m here. It’s all so confusing. And who is this in this picture?”
I took a peek at the picture to see if I could help. It was one of the pictures my sister had been wondering about. The photo, along with a handful of other pictures of Viv’s children in their growing up years, had mysteriously disappeared during her last visit with Momma. Knowing Mom’s propensity to hide things, Viv had texted asking me to keep an eye out for the photos. I had found the others, but had missed this one.
“That’s your grandson Scotty when he was a boy. He’s a daddy himself now.” Momma sat silently studying the picture for a few moments, willing her mind to remember, but obviously drawing a blank. “Oh, no! I wrote on the back of it!”
Momma’s handwriting was definitely on the back of it, and the picture had been ruined by the tell-tale ballpoint markings. Momma had used the photo as if it were a piece of scrap paper, copying what she had read off of the face of the clock in her bedroom. Momma tried to reconcile what she had written on the photo with what she saw on the clock on the microwave. “No, it’s supposed to be 7:13, not 7:30!”
There was no point in trying to explain that time changes by the second. This was one of those moments in Momma’s changing world of Alzheimer’s where I could almost feel another piece of Momma’s mind slipping away.
I asked Momma if she remembered her name. She assured me she knew it, but wouldn’t say it. I prompted, “Of course, you know you’re Charlotte Peet Boyles.” She looked relieved at the reminder of what her name was as she nodded her head in agreement. I smiled at Momma in an effort to encourage and calm her, but on the inside, I cried knowing she was fearful of what was happening to her.
I find comfort in knowing I am not alone in this phase of life. I follow a blog called “God’s Grace and Mom’s Alzheimer’s.” The author’s own Mama had gone Home to be with Jesus in December of 2016, after a long battle with Alzheimer’s. Cheryl had been there with her through it all. Now, her mother-in-law lives with her, traveling a similar path in life. Today’s post met me where I am. I share it (click on the link below) for those of you who are in a similar place in life right now – in need of a reminder of God’s grace in the midst of a seemingly impossible trial.
It’s amazing how living with a loved one with Alzheimer’s changes the way I view the world around me.
There is a lovely park within walking distance of our home. In the eighteen years we’ve lived in this neighborhood, I’ve spent many hours at this park walking its paths, playing with my grandchildren, thrilling at the occasional firework display, and enjoying the park’s quietude and simple beauty. Today, I stumbled upon something beautiful along one of its meandering pathways. It’s a wild rose, a beauty hidden from the view of the casual observer as it scrambles up the trunk of a somewhat scraggly pine tree. I “discover” it there every year without fail, yet it always seems to momentarily surprise me when I spy it for the first time each summer. Continue reading “Beautiful Forgetfulness”
Today could have been a very discouraging day. It seemed the Enemy was definitely intent on throwing into my path every obstacle he could muster as I tried to minister to my mom and brother.
It was obvious to me that from the moment mom awoke, her state of confusion was worse than I had ever seen it. As she stood in the middle of the kitchen of the home she and dad had built in 1962, she looked at me and said, “I’m really in a fog. I can’t remember where anything is. This doesn’t even look like my kitchen.”
My heart sank. Mom’s dementia was on the move again, claiming another piece of her short-term memory – and maybe even a little bit of her long-term memory as well. Together, we made it through the morning, enjoying one another’s company and figuring out life’s little dilemmas like, “Who took ALL the pens and pencils in this house?” Momma was now ready for one of her frequent naps.
While Momma napped, the next thing on my agenda was a trip to the VA hospital where my brother is a patient. My mission was to speak with the Social Security Administration (SSA) in a second attempt to set up an on-line account for Brad so I could help him apply for disability and monitor communications from home. [Last week’s previous failed attempt included getting “locked out” of his account and an unfruitful phone call to the SSA to unlock his account – a long story, complete with a one hour 20 minute hold time and a lecture about committing fraud where I was admonished that Brad needed to be present in the room while I was working on helping him.]
I arrived at the hospital armed with my generally trusty laptop and fully charged iPhone, parked myself at Brad’s bedside, and made the second call. Thankfully, our hold time was just 35 minutes and we were able to speak with a very kind and helpful representative named Brandon. In the end, even Brandon was unable to help me accomplish my goal, but he did assure us that we would be asked the very same questions at our phone interview on February 15.
Kind of frustrating. As frustrated as I was, I did recognize that even this situation was an answer to prayer. It was not the answer I was looking for, but a closed door is still an answer. I have every confidence God will open the right door in His time.
When I arrived back at Momma’s house, I was dismayed to find yet more evidence that mom was experiencing a very bad memory day. Mom was fretful and talking about “all the kids” who were visiting her yesterday. There were “so many” of them. According to mom, they were well behaved enough, but messy. She said she enjoyed spending time with each one of them, but now she was left to find where they had put all her stuff.
Sadly, there were no kids here yesterday…or any time in the last several weeks (unless you want to count her 55 and 58-year-old daughters in the kid count). Mom’s “stuff” was indeed missing. Not only were all of her pens and pencils missing again, but so was her checkbook, her shampoo, and nearly every Kleenex box in her home. Mom accused “the kids” of taking her stuff. She accused “those girls you hired” of stealing her Kleenex, complaining, “They should really bring their own.” She even accused me of using up her shampoo.
The truth is, the increasing paranoia of dementia makes Mom hide her own stuff. Her pens and pencils were tucked in her dresser drawer. The checkbook was in her purse where it belonged, but her purse was hidden. Her shampoo was sitting on top of her dresser, rather than in the shower. And the Kleenex boxes were stacked up in the corner next to her favorite chair.
Yep, it was definitely a very discouraging day. Thankfully, over the past several months, God has impressed upon my heart the need to look for joy in the midst of life’s difficulties. It’s always there. I sometimes have to look a bit harder, but I can always, always, always find joy.
Today’s joy was found in seeing my brother looking content and better than he has since Christmas. I felt it in his heartfelt “Thank you for all you’re doing for me and Mom, Cin.”
That little bit of joy would have been enough for me to treasure in my heart, but God had more in store.
When I walked in the door with arms full of groceries later in the day, I found Momma standing in the kitchen in the same spot where earlier in the day she had stood in a scary state of confusion. This time, I found Momma experiencing absolute delight having just received a phone call from Jean, one of her friends at church. Jean told Momma she was planning to visit her on Friday and she would be bringing Momma’s friend Bev. We added that special bit of joy to Mom’s calendar so Momma can smile every time she looks at it.
But God still was not finished. Momma had also received some mail – a very special Valentine from her very thoughtful sister. My Aunt Carolyn had also enclosed several old photographs from Momma’s younger days. Each picture evoked a crisp as can be memory and story for her to share with me. Incredibly special moments in time.
Thank you, dear God, for infusing incredibly difficult days with even more incredible bits of joy.
What irony that I am posting this reminisce on the very night that my mom got into a carton of ice cream behind my back. She had no recollection of where the empty carton came from, but her tummy remembers. Continue reading “Ice Cream and Car Keys”