I’d like to thank my new friends at the Alzheimer’s Society of Bangladesh for inviting me to contribute to their latest newsletter.
If Alzheimer’s or a related form of dementia has never directly touched you, the possibility is probably the furthest thing from your mind. I know that was the case for me. I knew so little about the disease; quite truthfully, I was one of those people who thought having Alzheimer’s simply meant you were forgetful.
Little did I know how all-encompassing dementia is – or the devastation it exacts on families. When my mom began to show symptoms in her mid-60s, I quickly learned dementia is so much more than problems with memory.
Dementia Does Not Discriminate
My mother had only been retired for several years when we began to notice small changes. I wanted to believe it was just a function of adjusting to retirement and hoped if she got involved in volunteer activities and hobbies, she would return to “normal.” So I hinted, encouraged, and pushed, becoming very frustrated when she resisted.
Mom had been a fiercely independent career woman. She had it all together; she was sharp, intelligent, witty, and fun. Her vibrant nature could light up a room. Traveling extensively, she had friends all over the country and was a role model and mentor to many whose paths she had crossed. She was the last person I would have expected to spend her “golden years” in the haze of dementia. She was too young and much too strong; people like my mom didn’t get this disease.
But, yes, they did. And they do – every day.
A Heartbreaking Decline
Over time, I watched as my mom’s confidence waned, speech worsened, and erratic behavior increased. She forgot what to do when the phone rang, no longer knew how to turn the television off and on, and suffered from paranoia – certain that I, her daughter, was stealing things from her.
A meticulous record keeper, she could no longer manage her checkbook, began getting lost on her almost daily 5-minute walk to the store, and fell prey to more than one scam. This woman who loved to cook and spent so much time in the kitchen no longer remembered how to use the microwave.
She was no longer able to keep track of her medication, even lacking the aptitude to follow the simplest of reminders posted around the house. Ultimately, aphasia stole her ability to communicate, depression replaced her familiar smile, and we got a frightening taste of psychotic behavior complete with hallucinations and delusions.
My mother, who had dined in some of the most upscale restaurants in the country, began eating with her fingers. When she could no longer do that, she had to be fed. She couldn’t dress herself, bathe herself, or use the bathroom by herself. She was completely dependent on others for every aspect of daily life.
We Must End Alzheimer’s and Related Disorders
In December, 2012, at age 76, she lost her battle. My daughter and I were at her side the moment her sweet soul left its earthly shell. We’ll never know if she understood who we were, but we are certain that she realized we were “hers.” She felt our love and we felt hers, right up to the very end.
I believe she has found peace and is once again whole, and that provides some degree of comfort. But, it doesn’t lessen the pain of missing her. It doesn’t stop the tears when they come out of nowhere. My mom was always my rock; even when she could no longer speak, just her presence soothed and reassured me. No matter our age, we never stop needing our mothers…
That is why I won’t stop fighting for research funding and increased awareness. No family should have to bear witness to the wrath of dementia.
Beautiful piece, Ann. I’m sharing it around. You help me digest the huge personality changes and fears my mom endured with Alzheimer’s. Also congratulations for getting an article out in Bengladesh. You’re a cyber-traveling sister.
I am a fellow caregiver and just came across your blog.
I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.
I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well – http://dementiapoetry.com.
The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer’s disease, and is aimed at helping to support other caregivers in a similar position.
If you would be happy to link to me, I would gladly return the favour!
Ann Napoletan said:
Absolutely!! I’m adding your URL to my list of recommended blogs as we speak. It looks fantastic. Will also mention you on my FB advocacy page! Best of luck to you!! ~Ann