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Why I work to support people with Alzheimer’s

Why I work to support people with Alzheimer’s

Beth Haas, Behavioural Support Worker for the Alzheimer Society of Oxford, shares her connection to Alzheimer’s disease.

Can you share what your personal connection to Alzheimer’s disease has been?

First it was my grandmother who had Alzheimer’s disease. It was still called senility in the 1970s.   At an early age,  I had to travel every other weekend to support her as she struggled to remain in the farmhouse where she had spent all of her married life.

And then, years later, Alzheimer’s struck again.  My mother began to experience memory loss. I witnessed  her  efforts to appear normal , but she recognized warning signs she had seen in her mother. I was 24 when she was diagnosed with Alzheimer’s disease.

And still the diagnoses keep coming. My mother-in-law was next, and this occurred  while caring for my father-in-law, who had vascular dementia. For a number of years, my husband and I juggled living far away with caregiving.

Were there initial warning signs that lead you to believe your mother’s health was changing?

With my mother, it was a year and a half before she was diagnosed.  She had short term memory issues but it went beyond that.  She seemed more fragile, unsure of herself, handed me her car keys to drive if we went out together, deferred to my father more often and became weepy. Her handwriting became shaky, spidery.

My siblings and I thought it was depression, specifically empty nest syndrome. She had no children at home for the first time in almost 40 years. She defined herself as a mother and she excelled at it.

Years later, while tidying my parents’ bedroom, I came across a letter that she had written to a talk show host after an episode on dementia. In her letter, she described noticing signs of memory loss in herself at least 3 years before any of us recognized changes. This seems to be supported in emerging research today: subjective cognitive impairment not yet detected  with today’s cognitive testing often develops into dementia.  What was heartbreaking was how she was so successful in hiding this from us for so long.

There are 10 warning signs of Alzheimer’s disease.  People may think these symptoms are a part of normal aging but they aren’t. Learn the signs here.

What support, if any, did you access?

The Alzheimer Society was brand new in the community where I lived. I attended one of their first support groups and it became a lifeline. I learned what we were experiencing at home was not unusual and, more importantly, that I was not alone.  They provided strategies, contact information for other community resources,  and an outline of what lay ahead. I inhaled it all and took it home to my dad and siblings.

Out of this came fuller understanding, more patience and tolerance for Mom and greater support for my dad who was the primary caregiver.

What propelled you to work in this field?

My original goal in university was to work in gerontology but then life intervened. My husband found employment in Europe. By then, my grief around my mother was too much to work in this field. Fifteen years after later when I was back in Canada, I was offered a position with the Alzheimer Society of Oxford.

My experiences help me understand what family members live with. It spurs me to think that I am contributing even in a small way, giving back to make the life of someone else’s mom a bit better.  That may sound clichéd, but my mother’s life guides me in most of what I do at work.

 Learn more about the 10 warning signs of Alzheimer’s disease.

Beth-haasBeth Haas, Alzheimer Society of Oxford

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother, Bruna was officially diagnosed with Alzheimer’s disease in January of 2011. The disease was not unknown to her family. Three of her sisters died of complications resulting from this creeping and subtle sickness, as well as her paternal grandmother.

Not long after the second time she had become disoriented while driving and her ever increasing lapses in recall, I decided to take her to visit her doctor. What if she ended up hurting herself, or worse, someone else? I could never forgive myself.

“Well Bruna, I think we’ll have to send you for more tests to figure out why your memory is failing you. Until then I don’t want you driving. It’s too dangerous for you and the people around you,” the doctor explained.

The ride home was awful. “Now I can’t drive anymore. You’d better be prepared to take me wherever I need to go because now I can’t take myself!” The decibel level of her voice rose with every word.

I pulled into her driveway, relieved to be there. My mother exited my van and slammed the door, uttering one last declaration of disappointment at how I had betrayed her. I was drained, yet I could only imagine how she felt – to know that her independence would be taken from her. To think that it would render her less able to look after herself with every passing year. This was the beginning of my mother’s journey with Alzheimer’s.

I cannot stress enough how I agonized about taking her to her doctor, but I knew that the longer we waited, like any serious disease, the less likely we would be able to treat it effectively. In retrospect, we were lucky, because I knew the signs. Even though she presented different symptoms, my aunt had Alzheimer’s years earlier and I saw the horrible process first hand.

The most crucial piece of information I can pass on is that the signs of Alzheimer’s can be different for everyone and that everyone – spouses, sons, daughters, sisters and brothers, need to be informed and aware of the possible risk. Knowing the signs and taking charge of the situation by helping your loved one to visit a health care professional if you suspect issues with memory is the best thing you can do for them.

My mother has been fortunate enough to receive care from many people and organizations in the community – healthcare professionals, community care services and the Alzheimer Society. Our local Alzheimer Society helped us understand the disease and assist my mother in living with it and managing her life. She is still living independently with some assistance and she takes medication which has slowed the progression considerably.

Many have helped to lighten the load. We have spoken to compassionate, supportive and patient individuals from the Alzheimer Society who are willing to give of themselves to assist us and educate us about where we can turn for help. And for this we thank them.

My mother is living independently with Alzheimer’s Disease and she refuses to be its victim. Know the signs and get checked out as soon as possible.

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edy_grazianiEdy Graziani with her mother, Bruna