God gave me the honor and privilege of taking care of my mother in the years that her mind waged war with Alzheimer’s. I am thankful that her brave battle with memory loss and frailty of body is over–the victory won as her affliction gave way to the ultimate healing when Jesus took her home to heaven.
My regrets are few, but if I could have a do-over of one caregiving thing, I think I would listen more carefully to the stories she told about her childhood. In my do-over, I would sit next to her more often looking through old photos, paying attention to the memories she shared. I would take care to write down all of the memories the photos coaxed from the places in her mind where the old stories still lingered.
With the help of my daughter, I did create a memory album for her, but it would have been nice had I started on the album sooner, capturing those stories for her to read and re-read as her memories slowly faded away.
While I cannot roll back the hands of time, I do find joy in knowing she is free from the bondage of memory loss and frailty of body. I find hope in knowing that those precious moments we did share are only a glimmer of the immeasurable time we will share together in eternity.
This post was written for Five Minute Friday.One word. Five minutes to write about it.
Today’s word: COULD
Another post in my “Rewind” series. This post originally appeared on October 23, 2016 as a Facebook note in my pre-blogging days. As I journeyed alongside mom with her diagnosis of Alzheimer’s, I learned through her experience many things about the affect this disease had on her world. As my mother’s caregiver, I have leaned heavily on the experiences of those who have traveled this road ahead of me. In sharing my experience, it is my hope and prayer that someone else will be helped and encouraged.
Even though Momma lives in a little one-bedroom apartment, many days she has a hard time remembering where her bedroom is located. A few minutes ago, I overheard her talking to herself saying, “Now, where is my bed?” Groaning with each step taken toward bed, I could hear my sweet mother then exclaim as she entered her room, “Oh, there you are! I can never remember where you are.”
I’ve been staying overnight at Mom’s house since September 11th. That was the night when mom had a severe separation from reality, scary hallucinations, and I had the realization that it was no longer safe or wise to leave her in her apartment alone. Sadly, she was so afraid to stay in her room. Every time I would get comfy and start drifting off to sleep on her couch, she’d come in the living room, flip on the light, then stand in front of the couch asking me if I was awake. I would get up, gently guide her back to the bedroom, do the room search (looking for the intruders she was so sure were there) and I would try to reassure her that everything was okay.
I noticed that even during naps taken during daylight, mom wouldn’t sleep under her quilt. I would often find it pushed to the corner of the bed or on the floor. On the third night of no sleep, Mom told me that there were “faces swimming” on her bedspread. She was clearly disturbed by its presence. So, I replaced the bedspread with an extra blanket and mom finally settled down enough to sleep for a few hours.
The next day, a very kind friend from church came to sit with mom so I could take my brother to a medical appointment. When I returned later that day, I related the story about the bedspread to her. She took one look at it and said, “Of course there are faces! Look here! See the eyes?” In all the years that the paisley bedspread had been covering my parents’ bed, I had never noticed that.
As I thought about my sweet friend’s observation, I recalled reading in several articles related to caring for individuals with Alzheimer’s that busy fabrics give some patients great anxiety and that it is helpful to use solid colors in clothing and decor choices. Even busy wallpaper patterns can take on frightening proportions that terrify the confused mind. With that information in mind, that very day, I stopped at my local Target and purchased a plain, simple white bedspread for her.
No more swimming faces – and every so often, I catch a heartwarming glimpse of mom gently fingering her new bedspread, running her hands across the soft fabric as she drifts off to a much more peaceful sleep.
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.
My parents, Jerry and Charlotte Boyles, were married on a sultry hot day, the third of July in 1955. From time to time, mom told a few wedding day mishap stories about that memorable day, one of which was that her little sister (and flower girl) came home from summer camp that morning and had head lice. I can’t imagine what it was like taking care of that problem along with the usual hurry and scurry of a wedding day.
The other story that I rather like was best told by my granddad – the short of it was that he couldn’t find his brand new pair of dress socks, so subbed in a pair of his well-worn Sunday socks. He said that his feet hurt something fierce that day. As he told the story, it was because the “lost” socks were actually not lost. Rather, they were stuffed for safe-keeping in the toes of his dress shoes; a fact that was not to be discovered until after the wedding.
Except for candid photos and snapshots taken by family and friends, many of which are fuzzy, there weren’t many photos from their wedding day. My daughter took the photos we could find and created a beautiful memory book for their 50th anniversary – they loved to page through it. Though there were no professional photos taken on her wedding day, Momma had some beautiful formal portraits taken of her in her wedding dress prior to the wedding. She was a strikingly pretty bride in her waltz-length lace gown with a matching jacket. For her flowers, she carried a small white, lace-covered Bible with a sweet corsage on the cover and little ribbons tied with flowers streaming from it.
Twenty-one years later, I carried the same little Bible with my own choice of flowers on my wedding day.
Momma honored her wedding vows in every way as she loved, honored and cherished my dad. Her commitment to him shone most brightly in her keeping of the “in sickness and in health” part. She walked alongside dad through battles with five different types of cancer in his lifetime until the day God took him Home in 2008.
Forgetting is one of the harsh realities of Alzheimer’s.
It’s hard to pinpoint when mom forgot dad. There were signs along the way as her memory of dad dimmed. I grew a little suspicious when I’d find notebooks and scrap bits of paper where she had written his name over and over again; perhaps willing herself not to forget. Some days, the memories could be resurrected or refreshed as we would look through photos together. Other times, they were harder to conjure up.
One night when mom was still living with me, I thought I heard her crying so peeked in on her to make sure she was okay. I could see that she had a photo of herself and dad in her hands. Her back was to me, but I could also see that she was dabbing at her eyes with big wads of Kleenex. It broke my heart to see her look at that photo and say through her tears, “Oh, Jerry Robert. Where are you? I think you died, but I just can’t remember.”
From the moment I arrived at BeeHive, it was apparent to me that we would be experiencing the final chapter of Mom’s remarkable sojourn on earth. The stroke had dealt a crushing blow, adding further injury to Alzheimer’s furtive chipping away of her mind and body.
I will forever be grateful to the staff of BeeHive for graciously allowing me to stay at my mother’s side during her final days. It was a hard week, filled with opportunities to be a comfort to my mother, and moments both endearing and bittersweet. My overnight vigil afforded a rare opportunity to observe the night shift at work, deepening my appreciation for those dear ones who watched over the residents at night.
On May 24, 2020, a beautiful Sunday morning, as I held her hand in mine, the final page of Momma’s life was quietly turned. My sweet mother’s story on this side of Glory ended just as I hoped and prayed: Alzheimer’s lost and God won as He called her gently Home to begin the story that never ends.
I have all sorts of excuses for why I’ve been a little hit-or-miss in the blogging department. The best reason I can proffer is that I’ve been taking little breaks for a bit of creativity of a different sort.
First up, a very special sewing project. My son sent me a text one night asking if I would make a Christmas stocking for a teen who is staying with them. I had made a stocking for each of my grandchildren prior to their first Christmas and he was hoping Danni could have a similar stocking too. I was so very glad he asked because I had it in my heart to do something for her, but wasn’t sure what she would enjoy. This would be fun!
Some of the signs of advancing memory loss can be seen most easily when viewed in retrospect.
Several years ago, when mom was still living in her own home in Milwaukee, I noticed that she wasn’t making it to her weekly “lunch bunch” restaurant gathering with a few friends. If I’d ask her about it, she would have a plausible reason. It wasn’t until I stumbled upon an envelope where she had written down the names of her friends in this group that I began to understand. Mom was in an earlier stage of memory loss – a very difficult stage where she knew her memory was failing. In this stage, mom had many strategies in place to help her remember things, including creating little “cheat sheets” for herself. One can only imagine her angst in forgetting the names of her good friends. As I looked at the envelope, I could see that, as the names came to mind, she would write them down – over and over again, as if willing herself not to forget.
Looking back now, I think it was just easier on her ego and heart to just stop going. My heart was sad when she stopped having lunch with her sweet friends…and even sadder when she stopped going to church altogether.
Looking back in the rear-view mirror of life, I can now clearly see that pulling away from the friends she loved was one of the huge signs of her advancing Alzheimer’s. As much as she loved these ladies, she can no longer remember their names – even with prompting. But I remember and am thanking God for these ladies. May I be the kind of friend to someone else that you were to my sweet mother.