The First Time I Knew There was a Problem

by Women's Brain Health Initiative:Alzheimer’s disease (AD) is now the most-feared disease in many western nations, surpassing cancer, stroke, heart disease, and diabetes. Awareness of dementia is higher than ever before, with individuals across the globe searching for signs of the disease in both loved ones and themselves. While it is common to experience bouts of forgetfulness (for instance, due to aging, sleep deprivation and/or stress), memory loss that disrupts daily life may be a symptom of AD or other dementia. Often our concerns are misplaced, but when our suspicions prove to be true, it is a life-altering experience. The following are some real life accounts of those moments of painful revelation. Most of the individuals who requested to be identified by their initials are women.“The first time I knew my mom was developing Alzheimer’s was when she spelled my name wrong on my university graduation card. It was heart wrenching and undeniable that something serious was happening inside her brain. The early signs of this disease became impossible to ignore, as my mother, who was also a distinguished high school English educator, doesn’t simply misspell the name she gave me.” -Kathryn Fudurich, Toronto, Ontario ‘’I vividly remember the day we received a troubling phone call from the dentist’s office. The receptionist told me that my mother had checked in for her appointment and then promptly left a brief time later. My heart sank. We frantically searched for our mother who had gotten lost on the five-minute drive home from the dentist. I was devastated.’’ -K.G., Sherbrooke, Quebec “ My mother's transformation began while I wasn't paying attention. I was an only child and very close to my mom - but that year I was in the throes of a white-knuckle pregnancy and very focused on myself and my baby. Really, in the first ten years of her slow twenty-year decline, the changes were not cognitive; they were more personality changes. As they progressed, I began to be convinced that her increasing paranoia, and other manifestations, was the war coming home to roost in her after all those years. My fearless mother would call in the middle of the night, terrified, to say she was hiding behind the bed and "they" were out on the balcony. Eventually, actually fairly soon, she refused to leave her apartment at all. One day I was relating something to do with my husband at the time sister's husband's brother. My brilliant mother could not grasp the relationship no matter how slowly or how many times I repeated it. That was the moment that the penny dropped and I started to understand what we were dealing with. This illustrates one of the many reasons why the work that WBHI is doing in education and dissemination of information is so important: had I had any notion earlier on that these too could be symptoms of impending dementia, I might have been able to find palpable ways to help her when it might have counted.” -S.Soyka, Thornhill, Ontario “The first time I realized my mother had dementia, I was very pregnant and she was requesting for me to come over daily to help her with the same tasks. I noticed she had notes and lists written down everywhere of conversations she had with people, shows she had watched, questions she had, etc. I realized then she had cognitive issues, and that we were about to go on a journey together.” -L. Bundy, Halifax, Nova Scotia“Both of my parents experienced dementia in their late 70s during an overlapping time period, so mom didn't present as typical. Mom was a caregiver to her husband with Alzheimer's, and simultaneously she was experiencing her own episodic dementia. Stress blurred everyone's reality. Mistrust and suspicion became more prevalent. Medications were hidden like Easter eggs. We reached out to the geriatric psychiatry team for clarification. For Dad, a cup of tea was often the antidote to everything, but dozens of cups of tea left in random places, like the inside of the grandfather clock, had us reaching out to a dementia home care agency.” -Ryley W. from Kingston, Ontario "Ever since I was a kid, my grandmother was always my favourite person to talk to. She always gave me a sense of peace and comfort anytime we spoke. In her 90s, I began to realize our conversations became shorter, and she would repeat herself more often. As her cognitive decline became worse, sometimes we would just sit together and enjoy each other's company. Those were the best days."  -Andrew, Edmonton, Alberta “The first time I knew dad might have some form of cognitive challenges was when he started accusing family, friends, and the local coffee shop of stealing his money and not giving him correct change over and over again. At the time, we didn't realize that his paranoia and anger were signs of Alzheimer's, especially coming from a soft-spoken spiritual man all his life. It wasn't until police, paramedics, and the emergency room physician were involved that we were made aware that he may have dementia, specifically Alzheimer's.” - Ron B., Toronto, Ontario “The first time I knew my dad had dementia was when my mom told me. He had been acting strangely so it was a relief to find out there was an explanation. I didn’t suspect dementia because I didn’t know anything about it.” -Lisa P, Calgary, Alberta  “I first found out there might be an issue with my husband, through him. He noticed words and thought processes were not coming fluidly. What followed was a year of appointments, tests, specialists, more tests, waiting, more waiting, and more appointments, then, the diagnosis that he had young onset Alzheimer’s disease.” -G. McLean, Calgary, Alberta“We thought dad had a stroke so I took him to the ER where I learned that the symptoms we'd been seeing were dementia. He was so childlike, confused, and scared. That was when I realized that my strong and capable father was gone forever.” =Angela Moore, Chilliwack, British Columbia “My husband managed a 1.5 million dollar budget when working and I was totally shocked to see he could not count change to buy a cup of coffee. After that, as the pieces fell into place, my denial was replaced with a profound anguish and desperation to understand dementia so we could live the best life possible.”-C.G., Moosomin, Saskatchewan"I had been working out of town for a few weeks, a six-hour drive away. My husband came down for a few days to bring me back home. I knew something was seriously wrong when we got home and I found he had left all the doors to the house wide open." -Susan, Whitehorse, Yukon“My husband and I had been married for 35 years with well-established routines and behaviours. We are both meticulous people – everything has its place and we always put things away in a timely fashion. In addition to his forgetting things that we all forget periodically, he began to leave things out and/or put his things in strange places. When I realized what was happening, quite frankly, I was scared to death – I had no idea what to do, nor a clue about what might be in our future! That was eight years ago. Now Ron is in a care facility where he is ‘safe and professionally cared for.’”  -Jeanette and Ron Nicholls, Calgary, AlbertaCare to share your story? Please drop us a note at mom@womensbrainhealth.orgSource: MIND OVER MATTER V7