By Barbara Leonhard, Featured Contributor
[Part 1 – Fire & Ice: The Faces of Grief]
As a way to examine grief and loss, I will share my story of the loss of my mother to Alzheimer’s, one of the most devastating forms of dementia.
What is Alzheimer’s?
According to the Alzheimer’s Association, Alzheimer’s Disease is a dementia caused by the building up of plaques—deposits of protein fragments that create spaces between neurons (nerve cells)—as well as tau tangles inside the cells of the brain itself.
This disease kills the nerve cells, leading to shrinkage of the brain and the loss of brain tissue. As a result, people with this disease lose their memories and experience cognitive dysfunction as well as behavior and mood changes. They become confused about time and place, have trouble doing daily tasks, misplace things and are unable to trace their steps to find them, and have difficulty understanding visual and spatial relationships.
Unfortunately, approximately 47 million people in the world have dementia, with 5 million just in the U.S. alone. This number is expected to reach 14 million by 2050. Of all those who suffer from dementia, it is estimated that 60% to 80% have Alzheimer’s Disease.
Who Are the Caregivers?
Did you know that it is estimated that 16 million people provide unpaid care to those suffering with dementia? More than 80% of caregivers are family, friends, or other uncompensated caregivers. Consider the fact that these caregivers are then unable to work a full-time job. This means that they are not contributing to society in the way they had expected or wanted, and they may not be able to provide for themselves later in their own elderly years, despite having devoted years to caring for others. Or, rather—what about those who work full-time and are still caregivers?
My mother was fortunate enough to be able to afford to live in an independent living facility before moving into assisted living. However, due to her cognitive problems, she thought her kids should have paid her rent and bills. So what do people do if they can’t afford a facility and their family doesn’t have a proper place? For instance, our house had stairs, which my mother couldn’t handle. Additionally, I would be at work all day, and my husband held music lessons at home. Not exactly an ideal place. Therefore, part of my grief response was unrealistic guilt that I had failed as a daughter by not caring for my mother in my home. Mom had cared for her mother-in-law in our home in Montana, so I think she expected me to do the same.
Because we see such a high percentage of people with Alzheimer’s and other forms of dementia, we tend to think that this is a normal part of aging. However, the effects of this disease are traumatic on both the family members and the caregivers. I sought grief counseling while I was caring for Mom.
My Journey with Mom
Because I worked full time as an instructor, a job that took a great deal of time after 5:00 PM, I gave up my social life to help Mom. She couldn’t do it without me. I felt increased physical pain and sorrow. To be clear—I am not complaining, just sharing. I know I am not alone.
I became my mother’s memory and warrior. When I recall all the problems this condition caused for her, I honestly don’t know how people who have no family can actually manage. At least I had siblings who helped support me in this endeavor. One brother who lived down the street, in fact. Even with the support, I was her primary caregiver.
An Unforgiving Process
As I watched the disease progress, I noticed she forgot recently learned information, told the same stories over and over, forgot names and appointments, and even started to forget her kids. She had seven children, and her purpose in life was to raise us. It hurt when she forgot us. A brother wanted to surprise her with a visit. He stood by the entrance to the independent living facility where she was living at the time. She walked right past him on her way to the car, not recognizing him. She remembered him from his childhood days but not at his present age.
Because she saw a lot of me, she remembered me, but she would forget I was her helper and her memory. When I arrived to pick her up for appointments, she would sometimes be gone, having begged a ride from the director of the facility! And despite my informing the employees not to ever give her rides (as I was going to), they would anyway…and leave her out in front of the building in the cold with her walker. I’m not sure how she even found the doctor’s office, but someone would eventually help her.
Mom also had trouble finding things and remembering how to perform simple tasks. I started writing her checks for her. Fortunately, she didn’t drive. She had sold her car before moving. It isn’t easy for the elderly to give up their cars and checkbooks. I’m grateful she turned over the checkbook to me willingly. Even though I knew she would forget our agreements, I always asked her permission. I feel she trusted me deep down.
Her memory caused her other problems. Forgetting she had medical insurance, she would apply for more, so companies would drop her. Or she was targeted by scammers, so I took her credit cards and other important personal information that she could give to a scammer on the phone. Her mental capacity and cognitive reasoning skills also declined. She would come to the car without her coat in 30-degree weather. To her, if the sun was shining, it was hot—period. I kept an extra coat in the car for these days.
A Season’s Change
Changes in mood and personality are also signs of Alzheimer’s Disease. Having Type 2 Diabetes, mom needed to care for her feet, but she was forgetting. We discovered at a doctor’s office that her feet were in bad shape. She was so embarrassed that she started hitting me in the car as I drove her to the pharmacy for things to help her with the condition. I was so stunned by it that I almost veered into traffic. This kind of reactive, violent behavior is more typical of Alzheimer’s as opposed to other forms of dementia.
When doctors would give her memory tests, she failed them. If she didn’t know the time or place or decade or president (and so on), she would say that those things didn’t matter. What was the difference? It was not important who the president was. I would often rush her to the ER because she was in pain, but once there, she would say she was absolutely fine. What was the big deal? I feel she was just too confused to identify where the pain was or know if there really was any pain. I could be her memory but not her body. I felt helpless when she had pain. Ignoring the pain would be elder abuse, but if she denied the pain, what could I do?
At most doctor’s visits, of course, they would talk to her, not me. I would stand behind her and shake my head “no” adamantly when her answers were wrong. She was too confused about her situation at all times to recall why she was where she was. She also had trouble communicating. She would forget words or stumble over word choices. As a result of her confusion, she felt insecure and fearful. She constantly counted things, checked her purse, and looked for things all day.
My mother started to be confused about the time of day, and I suspected she wasn’t going to bed. I think she was just sitting up all night in her clothes because I failed to see a change in outfits. At the assisted living facility, they wouldn’t force her to change her clothes. If they asked three times and she refused, then no clean clothes. The same went with bathing. They wouldn’t force her to shower.
I felt helpless at times. I couldn’t be there with her all day and night to make sure she was bathed and dressed appropriately. Even if I was there to help her with her CPAP machine, I suspect that she removed it as soon as I left.
In 2016, my mother died after suffering from Alzheimer’s for at least 13 years. She was 89.
The following poem describes how I saw my mother’s mental disintegration during this time.
A garden once planted in spring,
bearing life in shade and sun,
is now tangled with weeds and blight.
A hearty yield once sustained by dew and noon rains,
now forgets in autumn light.
Baskets of Gold, having bloomed and stretched for sun,
now shrivel, scorched by drought.
Honeysuckle, a trespasser in flora
that once nurtured monarchs and bees.
Wisdom of soils and seedlings,
now crumbles to dust.
Once a bounty of bliss, now wild bramble
on depleted soil.
Her secret garden.
[Part 3 – Grief: Healing Through Poetry]
Barbara Leonhard is a writer, poet, and blogger at Extraordinary Sunshine Weaver. Her podcast Poetry: The Memoir of the Soul explores universal themes such as Grief, Kindness, and Presence. She taught writing for many years at the University of Missouri and is the author of Discoveries in Academic Writing. She is also a regular contributor to Free Verse Revolution and Go Dog Go Café.
Poetry Blog: extraordinarysunshineweaver.blog
Poetry Podcast: meelosmom.podbean.com
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My mother, too, died from Alzheimer’s, July 6, 2011. All the things you describe are true. She would know who I was, we’d be talking and laughing, then she would narrow her eyes and hiss out, “Where is my daughter?!” I learned to go with the flow. I stood up and told her I would go get her (me). Went out the door, came back in. “Hi, Ma!” “Oh, I’ve been waiting for your!” and we would continue on. Or she would say, “Do you know what your father did!?” “Uh, no, what did he do?” thinking I’d get some inside scoop about something salacious (Dad died in 1970, btw). “What did who do?” “Dad…” “I have no idea what you’re talking about…” and on she’d go down another track.
I miss her…I missed her back then when I needed her to tell me what she needed. I miss her now when I need her to tell me what I’ll be needing as I get on to her age…
Blessings on your heart, Barbara. Here’s to our moms… 🙂
Dearest Roxhhh, your experience brings tears to my eyes. I’m so sorry to hear of your loss. Thank you for sharing these tender memories.