June is Alzheimer’s and Brain Awareness Month and a time where we show support for those living with Dementia. In an effort to gain some understanding about this disease, I reached into my circle of friends who have been deeply and directly impacted by it.
RELATED READING :: I Hate Alzheimer’s
My best friend, Rokeisha Bryant lost her grandmother to the disease and had this to share when I interviewed her.
LCH: How has Alzheimer’s impacted your life or your family?
RB: My understanding of grief has completely shifted. My family grieved the loss of my grandmother (the woman who raised me) for years before she died. We went through all of the stages of grief separately and it deeply impacted our relationships amongst each other. Watching my granddad proudly take care of my grandmother at the cost of his own health made the circumstances just as difficult to watch. Overall, Alzheimer’s has shifted my perspective of memories altogether. Trying to tell my story to those closest to me, taking pictures, capturing audio/visual, etc is something I don’t take for granted. It’s also caused me to think about prevention and what if it happens to me more than I would like to admit.
LCH: Where there any early warning signs/symptoms that you saw?
RB: Yes, my grandmother became very secretive first. I assume she was trying to hide her condition from others, yet as it progressed it became her and my granddad’s secret. Eventually she became more withdrawn losing interest in things (like watching grandkids and cooking). When the official announcement was made to the family that “her memory was slipping” we all shared stories of things we had noticed over the years but didn’t share in an effort not to embarrass her. Ultimately, she became very paranoid and started to hallucinate, this created safety concerns. For example, I remember being called and told that she threw boiling water into the air because she saw something threatening/scary on the ceiling. Shortly after she received her official diagnosis and was placed under doctors orders.
LCH: Have you personally researched Alzheimer’s and if so, what did you learn?
RB: Yes! I’ve researched and continue to research. Unhealthy lifestyle, diet, stress, and genetics can all factor into developing the onset of dementia, but there is so much more to know. I remember learning that it’s like the brain no longer has plasticity and that it’s pretty much turning into cement – that description still really stick out the most. Once it starts it’s no going back you can only slow it down. I also learned, in reference to diet, that MSG products (like Accent seasoning) can contribute to the onset. And while I don’t know the validity or reliability of that statistic I know my grandma prided herself on keeping her cabinet stocked with Accent, seasoned everything with it and even purchased it in bulk to share with her sister from out of state- who now has Alzheimer’s.
LCH: Are you a Caretaker of an Alzheimer’s patient? If so what’s a typical day look like for you?
RB: No, my grandad did everything. However when I visited I would try to take as much of his load as possible. On occasions I would bathe her, clothe her, feed and sit with my grandmother. I specifically remember it feeling heavy and lonely.
LCH: If you could say or give something to your loved one that suffers or suffered with Alzheimer’s; that they could remember forever–what would it be?
RB: That’s a difficult one. My first answer is whatever they ask for. Like my grandmother kept asking for her baby so my granddad got her a doll. Later she became obsessed with folding clothes so he always kept a basket nearby for her. I guess if you think about it there isn’t anything that we can make them remember; but when they do remember we can do our best to provide an environment that prolongs that memory. Less tangibly my answer is love and safety. A comforting feeling that they will be provided for and taken care of until they take their last breathe.
LCH: What do you wish more people knew about Alzheimer’s?
RB: It horrible! It takes your life away before it’s gone. Prevention and intervention is key. The sooner you address it the better your prognosis. Caregivers need more support, and quality care shouldn’t take a family to the poor house. Last but not least, as difficult as it can be on the entire family, it’s also difficult for friends. My grandmother’s best friend visited every Sunday until my grandad asked her to stop. I can only imagine the pain she felt. She was in my grandmothers life before my grandad and they shared everything. Friends keep memories alive too!
I also spoke to another close friend, Dana Baker and her sister, Deirdre Reynolds. Their dad is currently living with Alzheimer’s and Deidre is his caretaker. Dana lives in North Austin and her sister Deidre lives in Florida near their parents. They both submitted videos for their interviews and I wanted to share the links below so you can hear them express their thoughts and emotions in their own heart-warming words.
The Longest Day is the Summer Solstice and the day with the most light. The Alzheimer Association has chosen this day, June 21, 2022 as a day of service and wants everyone across the globe to do a fundraising activity of their choice to help fight the darkness of Alzheimer’s. Please find more information about fundraising ideas, donation and how overall info about this disease here.
I want to thank Rokeisha, Dana and Deirdre for sharing their insightful stories and participating in this informative blog post about Alzheimer’s and Brain Awareness.