Mom and I have become masters at this game. A game that we never willingly signed up for, but everyday we show up to it without a choice. On the phone and in person, I hide that she’s forgotten and she covers up that she has forgotten the details that used to come so easily. She manages and approaches everything with an open-ended language that helps make the forgotten details not as apparent.
Over the last decade, we have watched her fear of the progression. One of the hardest parts is when the inevitable moments of correction, explanation, and her need for help make her feel unintelligent. She is one of the smartest women I have ever met. She loved school, is a lifelong learner, and a master at finding the information needed for an answer. Her default is to feel like she isn’t smart anymore, like this is her fault. I try to explain that if she had cancer, she wouldn’t be so hard on herself. I reassure her that there are still good times to have, trips to be taken, holidays with family, and life to live. It broke my heart one day when she responded to my attempts of comfort with “I know but I won’t remember it even as it is happening.” Such truth and vulnerability hung in the air.
She is much too young for this to be happening. Her grief in not getting to spend her retirement how she planned is really tough. I am proud of how she has navigated all of the hard things that come with Alzheimer’s. She lives in an independent living apartment in a beautiful retirement community in Huntsville only a couple of miles from my sister, Cherry. She moved there after being in Iuka with me for a few years. She has a dog named Drayden that loves her as much as she loves him.
She was diagnosed with Alzheimer’s over a year ago, though the signs of its arrival started 10 years ago. Today is the “Longest Day”. A day to shine a light on those with Alzheimer’s and their families. There are so few treatments available and hope is not something handed out with the diagnosis. I’ve watched too many of my family members walk this road, and odds are it will one day be my journey to walk as well. What I hope is for the stigma around the disease to go away and progress in the area of treatment. The lack of hope and the fear that plagues those affected feels overwhelming. I talk about this as it is happening, because I want to show that it is worth sharing in the moment.
Here are some statistics to help spotlight how prevalent and magnanimous this disease is.
Diagnosis:
- 1 in 9 people over 65 has an Alzheimer’s diagnosis
- 2/3s of those diagnosed are women
- Deaths from Alzheimer’s have doubled in the last 20 years
- 54% of people experiencing self-perceived difficulties with thinking or memory have not consulted their health care professional
Caregiving:
- 83% of all help for older adults is given by unpaid family and friends.
- 2/3s of those caregivers are women and 1/3 are daughters
Health Care Professionals:
- Less than 1% of Registered Nurses, Nurse Practitioners, Physician Assistants, and Pharmacists identify themselves as specializing in Geriatrics
- Only 4% of social workers have formal certifications in geriatric social work
Mom is loved and adored by us and so many friends and family. And in the midst of this hard diagnosis, her smile still lights up every room she walks in.