Living with Alzheimer’s Disease

My mother Shirl passed away quietly in her sleep on December 4th, 2013, six years after being diagnosed with Alzheimer’s Disease.  I spent the evening with her the night before, not knowing our time was limited not even a sense…she seemed fine! She ate her dinner, she was alert. But God had a different plan for my mom. If you or someone you love is affected by this awful disease, please share your story here, or with others. Keep track of everything and photograph everything…it helps to heal. I sat down and just started to write her story just a few years ago, starting from the beginning.

2011— With pride and respect I would like to share my mother’s journey as she slips deeper into the depths of a brain disease called Alzheimer’s. For the past few years our fragmented family has struggled with the inherent changes brought on by the disease of which we knew very little about. The woman you see in the picture represents her today sharing lunchtime with few other ladies. What I do know is that the mental and emotional ride that occurs with Alzheimer’s is virgin territory for most of us, and denial is powerful.Seventy-six with Alzheimer

Our mothers are awesome women with their own unique personality and vibrant past. Some of us are close with our moms, some distant and not in touch at all. Mothers, especially older ones, can be cranky, judgmental, meddling, quiet, loving or demure, but their signature style is simply who they are. Whether the relationship with Mom is tight-knit or strained, one thing is for certain, we know her well, and we love her regardless of where we stand in the relationship. When the chips are down, we will step up. When health goes awry in our parents, we need to be there, and put in the time. Alzheimer’s is a painfully slow disease, so slow it’ll catch you off-guard and by surprise, and denial thrives like a crazy fool.

Well, they are the same person, but they’ve got a brain disease.
And it’s not their fault they’ve got this disease.
–Ronald Reagan

Hazel Ayers McDonnell, 19

Early childhood, early trauma

In the 1930s, my mom was born to a young, fragile 20-year old girl named Hazel Ayers McDonnell and her equally young husband, James McDonnell. Hazel grew up in Wilmington, Delaware, one of 17 children. Hazel outlived most of her siblings. For most of her life she witnessed the untimely deaths of her beloved brothers and sisters who were unable to survive measles, chicken pox, influenza and high fevers.

Barely an adult with an 18-month old baby girl, young Hazel herself was tragically stricken with flu-turned pneumonia and sadly succumbed to her illness. I dwell on this particular moment in time, right around 1936…I wonder what it would have been like to be there during the days after her passing, witnessing friends and family who dealt with the delicate 18-month old baby girl who was missing her mother and crying for her. I wonder if this early, traumatic loss was in any way a contributor to experiences that would play a part in my mom’s brain illness of today. Will the future provide answers?

When Hazel died, Jim McDonnell, buried his young wife in a countryside cemetery in the rolling hills of Pennsylvania, near the Amish countryside. But his grief was short-lived and he quickly married a woman named Mary who had two sons several years older than his little daughter. According to my mom and her uncle Charles Ayers, Mary found it difficult to accept the young girl and spent a decade tormenting and demeaning her, offering the workers in their bakery business a “quick touch”.  My mom remembers this scene clearly, especially the haunting laughs from the workers that followed.
The step-brothers were encouraged by their mother to join in, and for years they engaged in a despicable, unspoken secret world of brutal sexual exploitation of my mother, raping her from ages four to fourteen. Whether Jim McDonnell, my mother’s father knew of the abuse is unknown, but my mother carried the memories of the assaults with her throughout her adult life, repressed for years, but then shared in detail with me in 2008 and again in 2011. She once said that she thought it was “normal” for families to do this.

Marriage, kids, divorce and mid-life

For adults, sexual abuse early on in our lives can bring with it an onslaught of physical and emotional developmental issues that persist throughout life. The list is nearly endless, anxiety, arthritis, migraines, depression. Imagine battling several ailments at once!  Only the last decade have we had  insight into the effects of sexual abuse and its correlation with some disease states. Many studies are currently underway on this very subject. For me, it explains so much. To my mother, it explains nothing. She has lived the affects of the cruelty against her, most of her life it lingers – and she has found it nearly impossible to put the experience behind her.

Joe on a short break from the Army in North Carolina

When Shirley was a teenager her father and step-mother decided to leave Delaware (era. 1951), pack up and move West to the Los Angeles area. In complete defiance, she married a local Mexican teenager named Joe shortly after turning 18 years old. Suppressing years of abuse suffered at the hands of family members, my mother became an Army wife, gave birth to four children –– settled in and was living a normal family life. And still – she wanted and needed a relationship with her and father and step-mother, all the while keeping it at arms length.

In the early 1970s, her father was becoming confused and delusional, and soon he no longer could recognize those around him, including his own daughter. Sent away to a regimented, lonely old nursing home, he simply faded away. In 1972, after a three-year struggle, James Edward McDonnell was quieted for ever, sadly passing away at 71. I can’t imagine the feeling my mom was experiencing, coming to terms with the fact that she was only in her 30s and no longer had parents.

In the years after her father James McDonnell died, Shirley developed severe Rheumatoid Arthritis and depression. Perhaps a reaction to his death or part reaction to her suppressed memories of the darkest days of childhood — she began to express bouts of anxiety, anger, and extreme restlessness.  She called it uncontrollable –– and it kept her from getting too close to people, including my father, and her children. She often said she was simply “going through the motions”, and wanted to be alone.

One morning in 1974, my mother decided to get a divorce and the family was broken apart. It was a devastating time for every member of the family, including our beloved father, Joe who was deeply despaired. My siblings and I scattered, trying to find life on our own as teenagers without parents at the helm.

With strength and grace, life moved on and within three years, both of my parents remarried. My mother shortened her name to Shirl, and her new life with husband Bob meant enjoyment of a new chapter of their lives; camping, vacationing, living quietly in a suburb of Los Angeles.

Jimmy (right) with father and brother (1987)

While the years brought her grandchildren, the death of my brother in 1990 to a car accident was a significant setback, for her and the entire family. For my mother, the years ahead brought extreme pain and suffering from the loss of my brother and unremitting pain from the Rheumatoid Arthritis (RA). She said life was battering her, the pain often intolerable.

Move to Pahrump, Nevada
Bob and Shirl decided to move to the desert, near Las Vegas where the air was low in humidity, a perfect scenario for remission from RA, but it didn’t help. The next ten years included numerous related surgeries and other health-related issues. Their relationship was happy and my mom and Bob led a quiet, humble life, mostly away from their grown children and grandchildren.
In 2007/08, as she continued to struggle with the pain of RA – she found her short-term memory significantly fading and her long-term memory suddenly crashing in. One day she called me very shaken,  she said it was urgent that I drive out to see her, there was something terrible she needed to tell me.  A bad memory from the past had come back, and she had to tell someone. A long repressed memory was unraveling in front of her.

When I got there I found her anxious and distressed. My mother said she only wanted to tell me the story, she did not want to discuss it with her own husband – so I respected that and together we walked to the porch, sat down, and I listened to details of sexual abuse from decades before.

Her story was disheveled, at times making little sense, but at the same time she described parts of the room, detailing bunk beds and dressers.
I listened to each word, much of it so graphic that I had to presend I was listening to a story about someone else. I was not prepared to hear it, but I knew I had to not to react, not to comment, and keep quiet.

She talked for a while, often confused and crying, angry that they had done this to her. My mother wanted me to help her find the wives of her deceased step-brothers to tell them what kind of men they were each married to!  Finally, she relaxed and she seemed to have a sense of calm.

For me, this was quite an intimate conversation to have, one my mother wanted me to be part of.  Interestingly, I have never been close to my mom. I have not had that kind of closeness that a daughter wants and needs from her mother. Yes, I have been there in person, showing up for things as needed, butmother-daughter closeness – no.  There were good years and strained years, there were unexplained gaps with little contact. But for her, she could only be as close as her past allowed her. That was how it was, she didn’t have a mother, she missed out on having a woman to love, to look up to – it affected her entire life.
This inner angst was always front and center in her and our lives, and we accepted aloofness as a side affect of her “bad childhood”.  Now, knowing the details about what happened to her, I have a deeper understanding of what bad childhood means. It helps explain so much about her.

Diagnosed with Alzheimer’s Disease
For Bob, the trip from their small desert town to Las Vegas doctors was starting to wear on both of them. Shirl had brought up her diminishing memory to her doctor for months now, and so this particular trip would help everyone come to terms with the true status of her mind.  The recent return of the repressed sexual abuse memories was long gone, tucked away in a safe cavern of her brain. 

Bob and Shirl were sitting in the doctor’s office when he stepped in and announced her condition as more than simple forgetfulness.
He gave a quick scientific explanation of the aging brain and then popped out t
he words “early Alzheimer’s Disease”.  The doctor told Bob that there wasn’t much to do, for now just keep her calm and safe. He said there are several promising medications to reduce symptoms and explained how a person can live ten years + with AD.

I remember the day of the diagnosis, it was summer in 2007, a blazing hot day. My mother told me what was said. I heard it, but I didn’t believe it. Her tone told me she wasn’t surprised or alarmed, maybe relieved. After watching her father’s slow death, she simply came to expect it. 

Mom & Bob, daughter and grandson, 2008

I thought to myself how easy for this one physician in the city of Las Vegas, Nevada, to deliver news like this to my mom, understanding very well that he is just one of many docs that would come and go over the next few years. He has no connection, no real commitment to the case, or to her. He could only deliver the news, not undo the condition. She is but one brain in hundreds of thousands that are all dwindling away at the same time. It’s still hard to grasp. The daughter of young Hazel and Jim, was on her way to a downward journey of a mind diminished.

I couldn’t imagine what my mom was going through. The news was stunning, and I know she was heartbroken. I knew Bob was heartbroken.
Not about to acquiesce, there were certainly things that we could do to treat it on our own, i.e., brain stimulation to unwind the disease.  We put up a bulletin board to help remind her of appointments and phone numbers. 
I bought a book on Alzheimer’s Disease so that she could begin to read about things she could do to stave it off. I wanted to reverse the disease, and prove to her and her doctors that reversal was possible.
My mom was still driving.  Her memories were slipping, but she was still able to drive. She could be seen cruising down the street in her red PT Cruiser to get her hair done.  One afternoon after a hair appointment she stepped into her car and took the keys out of her purse. Staring down at the keys in her hand, she realized she had no idea what to do with them. She circled the dashboard but could not make the connection of how the keys worked to make the car run. Panicked, she called Bob to come and get her. It was sometime in 2009, and the very last time my mother drove a vehicle.

A walk through Alzheimer’s Disease


(To be continued… )

229 thoughts on “Living with Alzheimer’s Disease

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