Written with love and great admiration for all those who are caring for a loved one who is facing Alzheimer’s or any other diagnosis that spells memory loss. I write from my experience of caring for my sweet mother in her later years with Alzheimer’s.
Here’s the next in a series of posts inspired by A-Z Caregiving Tips (pictured below). A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. You can read my previous posts for my tips on A – L. It seems I have a lot to say about “M,” so I will focus on that for this week.
Make new ways I can be of service to others
Mom was a nurse. A dedicated and amazing nurse. Even after she retired from her long career in nursing, she still practiced nursing in an unofficial way as she came alongside family and friends as they went through their physical trials in life. She was dad’s constant companion whenever he faced any of his cancers and surgeries. She served her friends as the requisite driver and responsible party when those friends faced day surgeries of various types. If someone was hospitalized, she was almost always one of the first visitors. Several of her friends had her come along to their surgeon’s or oncologist’s office when they were going to receive their scary diagnosis. Mom knew just the right questions to ask and how to help her friends through the difficult days ahead.
The time came when Mom was the patient with symptoms of short-term memory loss. I’m sure she knew something was amiss long before I started noticing memory blips. Who knows how many years she wrestled with that knowledge alone? Based upon dated notes and lists I found here and there, I would say for a few years.
Although Mom forgot many things, the experiences of her lifetime still served as a guide in her daily interactions. Even after mom moved in with me and then later into assisted living memory care, I routinely saw the nurse in mom present when she’d notice someone wasn’t feeling well and then do her best to make sure they were cared for appropriately.
It was like a special window into her past which allowed me the privilege of seeing what she may have been like when she mothered me as a baby. (Mom and me in this photo.)
Let me share just a few photos of her doing things which made her feel useful during her years spent living with dementia.
I’m thinking now of a resident at the assisted living memory care home where my mom lived for her last 14 months of life. June was usually the first one up every morning. She took very seriously her job of raising the window shades at the start of the day. The staff would then present her with a large basket filled with freshly laundered clothing protectors (bibs) and towels. June took great pride in folding them.
My mom would do the same thing when she was living with us for a few years. She loved to fold laundry, especially when it was warm out of the dryer. The warmth felt good on her arthritic hands. She would also dry dishes for us. Her legs were unsteady, so I would set her up with everything she needed at her place at the kitchen table. Mom had also been into gardening, so I would occasionally try to get her outdoors to help me. She especially enjoyed deadheading and cutting back spent foliage. Her specialty, however, was sweeping. She couldn’t stand to see even one leaf on the deck or porch, so we’d arm her with a broom and she’d happily sweep for quite some time.
I can’t talk about this subject without thinking of Heather, an amazing blogger I follow who cared for her sweet mother too. Heather’s mum, Margaret, had been an artist, so Heather would play to her mum’s interests and strengths by creating art therapy projects for her to work on throughout the day. They even opened an Etsy shop in order to sell some of her ‘Made by Mum’ projects, donating a portion of their profit to the Alzheimer’s Society. Heather’s amazing website Creative Carer is filled with photos and tutorials, a link to her very helpful and inspiring blog, and oodles of practical ideas for caregivers who desire to keep their loved one meaningfully engaged.
Momma undoubtedly bought several watches during her lengthy nursing career. But, as she often recounted the story of her watch, she had been wearing this very watch since she graduated from nursing school in 1955. You see, a watch with a sweep second hand was essential in my mother’s era of nursing. It kept you and your doctor on schedule and kept you accountable for the time you spent on breaks. When updating a patient’s medical chart (no computers back then), it provided the time for documentation purposes. Its sweep second hand was the essential tool momma used day in and day out to measure a patient’s heart rate in 15-second increments of time.
Holding my mom’s watch in my hands today, I recalled how meaningful it was to her, even after my mom could no longer tell time (which I wrote about here). A mind clouded by Alzheimer’s loses the ability to measure the passage of time or interpret the face of a watch somewhere in the middle stages of the disease’s progressive march through the brain.
Even after my mother could no longer tell time, I invested a good bit of time in finding my mom’s treasured watch when the paranoia of dementia would cause her to occasionally hide it for safekeeping. I had the band resized when she slimmed down and it spun on her wrist. I even took it in for repairs once and replaced the battery on several occasions. The natural motions of her body would wind the self-winding watch (another clue that it was NOT from 1955), but Momma would wind it anyway because that was what she remembered doing in days gone by. Over time, this damaged the watch beyond repair, but she still loved to wear it.
When my mom moved into assisted living memory care and I saw how she would distribute her things all over the building (and borrow the belongings of others without consent), I decided to take her watch home with me for safekeeping. I hated to take something that was hers, but the story of the watch had also become something I treasured. Thankfully, it didn’t seem to matter much to mom — especially since her friend and BeeHive neighbor Roy didn’t seem to mind if mom (ahem!) borrowed his watch from time to time.
One day I noticed my mom sidle up her wheelchair to another lady friend at BeeHive. She seemed concerned that her friend was slumped in her wheelchair. Here’s the precious thing I was honored to witness with my own eyes. Momma reached over and gently placed two fingers on her sleepy friend’s wrist, instinctively finding that arterial sweet spot nestled between the thumb and tendon. The nurse in my sweet mother looked at her watchless wrist as she felt her friend’s pulse for about 15 seconds, then smiled with satisfaction and patted her sleeping friend’s hand as she said, “You’re going to be okay.”
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.
This post is another in a series of my Facebook posts from 2015 related to caring for my mother. It’s really hard for me to re-post it without shedding my own tears. Those who are walking alongside a loved one struggling through the various stages of Alzheimer’s will probably relate very well. By the time you realize that the momentary lapse of memory is something more than the natural aging process forgetfulness, hints at “forgetting time” or how to tell time have already begun.Continue reading “Forgetting Time”