If you have been blessed to spend time with my mom, a friend, or loved one with Dementia, you may have come away in awe of their lifetime adventures.
My mom, for example jumped out of a plane at ten thousand feet, and parachuted safely to the ground with President George Bush. She also had a delicious luncheon with First Lady Barbara Bush on their veranda, overlooking that vast and endless expanse of brilliant blue ocean, at their home in Kennebunkport Maine. She then raced that beautiful and fascinating chestnut stallion, Secretariat, to its first place finish at the Kentucky Derby. In addition, she and my dad attended a Super Bowl, sitting right behind the bench on the 50 yard line, almost able to touch the players. She also survived that devastating collision with an iceberg, aboard the Titanic in April of 1912, thirteen years before she was born.
She lived an exciting and adventurous life in this otherworldly dimension, and her new memories gave her much pleasure as she boasted about these adventures. They made her happy.
My grandmother, while she was living with us also shared many stories that would have my younger brother Kevin and I howling, encouraging her to continue, much to my mom’s dismay.
These were pleasant and funny stories. Other times these tales were not, well…quite as nice.
Once, during a party at my home, thinking that a small bowl of dog kibbles left on the kitchen island was an appetizer, mom began to nibble. When my sister in law Cathy mentioned that she was eating the dog’s food, she defiantly blurted out that it didn’t taste any different than the rest of the garbage that I feed her.
Another time while at a doctors appointment that she didn’t want to attend, the doctor directly asked her why she was there, and what was the problem. She immediately pointed to me and responded that I was the problem, and the reason we were there. I still bust out laughing every time I recall the look of bewilderment on that doctors face.
There were times when she was living independently in her home, and before her diagnosis, that she would accuse her lifelong friend and neighbor of placing her garbage in my mom’s cans. She would actually sift through her cans looking for telltale evidence of her neighbor’s trash.
There were also times when mom would make rude remarks in public, pointing to someone and calling them fat, or make racial slurs, which was totally out of character for her.
Right along with the cognitive loss in dementia comes the loss of inhibitions, and for mom this started during moderate stage Dementia. Mom was losing her filter, and her sense of social norms.
And unlike the crazy stories which were imaginative, funny, and easy to go along with, these outbursts could be downright mean. Under those circumstances, the best I could do was to distract her, apologize to the offended, explaining that she had dementia, and move on.
Trying to correct mom or bring her back into reality was an exercise in frustration.
There is a word for these strange and crazy stories, and that is confabulation.
Confabulation is defined as a memory disturbance which produces fabricated, distorted, or misinterpreted memories about oneself or the world, without the conscious intention to deceive-Wikipedia
A lot of mom’s stories involved something that was going on at the time that she may have heard on the news, or read in the paper. She then took these stories and made them her own. This was her new reality.
Ultimately, Alzheimer’s will affect most of the brain, but the area, or lobe that controls our personality and behaviors, is the frontal lobe. So mom’s unsettling and embarrassing outbursts were the result of damage to that part of the brain.
As dementia steals our memories, other parts of our brain try to compensate by creating new ones, or coming up with reasonable substitutes.
So many of mom’s stories started in some form of reality, and morphed into fantasy. That is also why mom thought it was Christmas when her great granddaughter was opening her birthday gifts. She didn’t remember the reason she was there, or when Scarlett blew out the candles. She couldn’t recall that only moments before Scarlett started opening gifts, we had consumed cake and ice cream. When she saw Scarlett unwrapping the gifts, she just guessed, and Christmas was a good deduction.
She wanted to remember, to be vital, and present in the celebration. When she shared her colorful stories she wanted to connect, to remain valuable, and to be loved.
Confabulation is just a term that describes a disorder, or disturbance in the frontal lobe, and basal forebrain. But this condition was much more to mom, and me.
In the dense mist and fog of dementia, in a world full of confusion and memory loss, this allowed mom, much like a child, to fantasize and invent a life that she could only have dreamed of living.
It allowed her to be, if only for a moment, undiminished by dementia!
Dream on mom!
Am I next?
Will I also be overcome by this torrent of rushing water that starts quietly in the placid stream hundreds of feet above the falls, discreetly making forward progress and trickling over the waters edge, then quickly gaining downward momentum, until finally, at breakneck speed, it crashes frantically into everything in its path.
Having two maternal generations of Dementia at my back, the possibility of myself, and my siblings succumbing to this disease is certainly something to consider. But what are the risk factors and what can we do to prevent this from happening?
The diagnosis of Dementia in a loved one creates an anxiety that is multifaceted, and when you receive this dreaded news you come face to face with a future full of apprehension.
Initially, there is the realization that you will lose who that person represents to you in this life, (mother, father, husband, wife, etc.), while they are still living. Then slowly the angst begins to seep in all of the lifestyle changes that will surround that loss.
Can she live at home? Who will be her caregiver? And when she can no longer live at home, where will she go? Can we afford assisted living, memory care, or a nursing home? Is there enough money to care for her? What will insurance cover? How long will she live, and will she outlive her money? How will she live with this disease, and how will she die? How will we manage this disease? Can I handle this?
I was still living at home when my grandmother, (Ma), was diagnosed with Alzheimer’s Dementia, so I was no stranger to this disease when my mom was diagnosed.
Mom was so busy handling the day to day details of Ma’s dementia that she rarely had time to converse about it, other than to make it well known that she, herself, would never, ever go into a Nursing Home. I know her journey with Ma’s dementia, which spanned the entire decade of 1980, terrified her, but she never spoke of falling victim to this disease herself. Perhaps speaking of it made it a real possibility that she did not want to consider. My mom redefined strong willed, and I can just imagine her thinking she could elude this disease just by willing it away-her thoughts being something like, “I simply won’t have this”!
Unfortunately, she could run, but she could not hide. Genetics probably being high blood pressure and high cholesterol, or small, silent strokes in midlife, created the perfect storm which collectively resulted in her Dementia. Mom, unlike her mother, was ahead of her generation in many lifestyle choices that today are thought to be advantageous in helping to ward off Alzheimers. She didn’t smoke. She ate very healthy. She maintained a good weight. She walked daily. She was a socail butterfly. She worked well into her 60’s. I don’t recall any serious head trauma. Solely from a lifestyle perspective mom should have sidestepped Alzheimers.
But anything that affects the condition of our heart, and all of its vessels, also affects our brain. So mom’s blood pressure in midlife which always ran slightly north of normal and her marginally elevated cholesterol may have caused small blood clots that from time to time travelled to her brain and interrupted blood flow, resulting in permanent damage to that area, and eventually leading to cognitive impairment. A couple of these small strokes may be inconsequential, and they go unnoticed as they do not directly affect vital functions such as vision or speech. But in mom’s case, an MRI revealed significant collective damage resulting from these tiny, silent strokes occurring over two to three decades. Mom didn’t know what was happening in her brain over time, and by the time she started displaying symptoms the damage was already done. I don’t recall any books on Alzheimers laying around the house after Ma’s diagnosis, and mom didn’t have a computer, or a tablet, or even a cell phone with WiFi back then, so her information was limited to what she gleaned from health care professionals. And that information was still in it’s infancy.
But today we have a wealth of information at our fingertips, websites such as the Alzheimers Association, (www.alz.org). Web MD, UsAgainstAlzheimers, (www.usagainstalzheimers.org), Alzheimers Foundation of America, (alzfdn.org), and many more that have excellent resources available for information about Dementia, caregiving, the latest research findings, and advice for being proactive.
So every time I forget a name, or I search for the right word, or misplace something, I usually make a bad joke about it and blame it on Alzheimers. And the experts say that as long as I eventually remember that name, or the right word, and recall where I put that misplaced item, I should be OK. Someone once told me the difference lies in not forgetting where you left your keys, but forgetting the purpose of your keys.
So in order not to be next, I try to be proactive, not only in my lifestyle choices, but also in my thoughts. By not allowing myself to be anxious about the things I cannot control, I try to focus instead on those thing I can control, like what I put in my mouth, and how much I exercise, or controlling my weight, blood pressure and cholesterol.
Like an hour glass, our sand will some day run out, and usually not by our choice of method. I have had numerous conversations with health care providers over the years regarding which is worse, cognitive impairment or physical impairment, including chronic, terminal diseases such as cancer. Most believed that Dementia is harder on the family, while physical impairment, and chronic diseases are equally difficult on both the patient and the family. Mild dementia was tough on mom as we had to make choices to keep her safe which resulted in her loosing her independence. But the more she forgot as the disease progressed, the more at ease she became. She also had breakthroughs, or glimpses of cognizance in moderate to late stage Dementia, and these occasions usually caused her anxiety as she realized, if only for a moment, who and where she was, or what she had lost, but then just as quickly, she slipped back into the woozy world of Dementia.
So what increases our risks? According to the Alzheimers Association risk factors include:
Age, the most significant, increasing as we get older. The risk of developing Alzheimer’s doubles every five years after 65.
Gender, women being slightly more likely to develop Alzheimers than men.
Medical History, any conditions that affect the heart and its vessels also increase your chances of developing Dementia. These conditions include diabetes, mid-life high blood pressure and high cholesterol, obesity, heart attack, arrhythmias and stroke. Also a history of depression, and severe or repeated head injuries
Environmental and lifestyle factors, which include an unhealthy diet consisting of too much unsaturated fat, smoking, lack of exercise, drinking above the recommended level of alcohol, lack of social and mental activity.
We are all going to age, and we can’t change our gender, or genetics. But we can modify our environmental and lifestyle choices.
And then there is always that beautiful thing called hope! Hope that someday soon a breakthrough in the field of research will bring about a cure.
My son is in his second year of Medical School, and one of his Professor’s of Pharmacology, Dr David Morgan, a leading Alzheimer’s researcher at USF Morsani College of Medicine’s Byrd Alzheimer’s Institute, recently told his students that a pharmacological cure was in the very near future. This possible cure, already in clinical trials, is in the form of a pharmacologic agent, a monoclonal antibody that breaks up the amyloid plaque in the brain-the hallmark of Alzheimer’s.
That is hope!
And my hope is that in the very near future no one will have to ask the question, “am I next?”
Mom lived for celebrations, for holidays and for birthdays! She loved any reason to celebrate, and these observances were steeped in traditions.
If you walked into my family’s home on the western side of Cincinnati during Christmas time, you would have encountered a festive and magical environment.
The Christmas tree held center stage, brimming with multi colored glass balls, assorted ornaments, lights, and tons of tinsel. A rustic Nativity set with stable animals and the missing baby Jesus, who didn’t appear on the scene until Christmas morning, was safely tucked under the tree. There were pine wreaths with big red bows adorning the doors, electric candles in the windows, big, multi colored outside lights framing the house, and of course the ever growing Dicken’s Christmas Village.
And if you journeyed along side of us during that season you would have experienced the long standing traditions which started with our annual trip to the Barker house in Oxford, Ohio where we would sip hot cocoa and spiced cider while purchasing wooden tree ornaments, a full day of cookie making, shopping, the Nutcracker, Christmas Eve dinner with the family, and midnight Mass at the Cathedral in town.
Mom was a party girl. She joyfully anticipated any and every type of celebration, but Christmas took the lead!
Dementia takes our short term memories first, and then slowly begins to pillage our intermediate memories, before, (and in mom’s case very close to the end of her life), it steals our most distant, or our very first memories. But the ability to experience joyful occasions still remain.
Mom still enjoyed Christmas, with all of its trappings and traditions up until moderate to late stage dementia, but we had to adjust our plans to accommodate her ever changing condition. While she once loved the hustle and bustle of all of the seasons activities, she became more easily agitated and confused when she experienced large crowds, bright lights, and loud noises. She stressed when she was away from her retirement community for long periods of time. Sometimes her unrest presented itself in outbursts, or pleads to go home, and often her eating habits changed when she was out of her normal routine. But the most noticeable indifference to the holidays was observed about a year before mom died. Thanksgiving, when most of mom’s family travelled to Georgia to see mom and celebrate the holiday, was also when we set up mom’s Christmas tree and decorated her room. She was usually excited to have everyone around, whether she remembered us or not, and an active participant in the tree trimming process, but that year was different. She watched from the sidelines, apathetic to the merrymaking surrounding her, sometimes slipping out of her room and joining the other residents in the living room. For the first time I began to sense a separation, an isolation from her family. The bright lights and loud laughter, which she had always been such a big part of, now overwhelmed her. Her comfort zone resided in the familiarity and quiet solitude of her home in the Memory Care Unit.
While we had to modify the details of our plans surrounding the holidays and celebrations after mom was diagnosed, we still continued on with the traditions.
Mom’s eyes still sparkled with excitement and wonder as we celebrated Christmas. She still loved the balloons, cake, ice cream and gifts that surrounded her’s and others birthdays. She may not have understood the true meaning of Mother’s Day, but she delighted in the attention that was paid to her, and her smile and laughter conveyed the true condition of her heart. These occasions aroused a joyful place in her soul. She was very much present, and happy during those moments, albeit behind an impaired brain that forget its function to remember, and converse in a conventional manner.
Hope in dementia lies in the ability to maintain a connection with our loved one. That line of communication has been altered, but it still remains. We connect through smiles, embraces, laughter, and actions of love. Mom will be spending this New Years Eve celebrating with her loved ones in heaven. No doubt there will be silly party hats, streamers, noisemakers, and midnight toasts with champagne!!!
Your loved one still remains! Tradition on!!
Happy New Year!
Today marks one year from the day that my sweet mom departed from this world. Shortly after sundown on December 14, 2014, and surrounded by her loved ones, mom caught the evening train skyward and traversed the surly bonds of Alzheimer’s.
Mom had suffered with Dementia for the last five years of her life. Initially, mom was diagnosed with Vascular Dementia, later after additional diagnostic testing the diagnosis was Alzheimer’s Dementia. The symptoms overlap which adds to the confusion, but the progression is similar. More than likely the disease had begun its assault much earlier than her diagnosis would suggest, as is often the case. Mom’s dementia was second generation. Her mom also died from AD so she was acutely aware of the symptoms. Fear can breed denial, and I believe mom became adept at masking the symptoms, that is until she couldn’t, and then the red flags began to appear. That is when our second journey with AD commenced.
Shortly after mom died I began a memoir that I hope to someday finish. This story depicts the tale of two journeys trekking the rugged terrain of AD. The terminus is the same, as it is for all of us, but the odyssey of these two souls as they advanced toward that summit is remarkably different. And that difference, in my experience, lies in the ability to reach through the fog and connect with that person wherever they are at that moment, and, allowing them through your patience and calm, to reach through to you.
Dementia is a big umbrella which houses its many types. Alzheimer’s Dementia is the most common, followed by Vascular Dementia, Lewy Bodies Dementia, Mixed Dementia, etc,. They all may progress, and present their symptoms slightly different, but the cognitive function loss caused by physical changes in the brain is the universal manifestation, and that loss reaches across every race, religion, and socio-economic class. The aftermath of a diagnosis of Dementia is much like the raging waters after a dam breaks, covering everything beneath it and affecting everyone in its path.
My intention with this blog is to reach out and provide hope to everyone on that path wherever that might be. As I write today, there is no cure, but there is hope. Hope for a cure, certainly, but equally important is hope in the form of how we rediscover the person behind that impaired mainframe, that soul that still resides and resonates deep within the damaged walls of Dementia. Support is paramount to living successfully with Dementia, and support comes in many forms. I encourage everyone to share your stories, your pictures, your prayers and your hope in supporting all of us who are or have been affected by Dementia!
Happy 1st BD in heaven mom! Your undiminished soul lives on!!!