I'll never forget the date, November 18th, 2009. The day my life changed forever. The day my spectacular mom, Josie, was diagnosed with Vascular Dementia. It felt as though the world stopped revolving. I could hear what the Neuropsychiatrist was telling me, but my brain wasn't understanding the magnitude. "Well, at least it's not Alzheimer's, I thought naively.
"What's Vascular Dementia", I heard myself asking the doctor sitting across from me. "It's dementia caused by vascular events", he replied.
"But, she'll be ok? It's not like Alzheimer's", I asked. "It's terminal. And she will likely die within three years", he responded.
It was all very matter-of-fact. Your mom will need 24 hour supervision, I was told.
In that moment, I went from daughter and working personal chef, to dementia caregiver. I knew less than nothing about dementia, but I vowed to care for my mom until her death. To me, there was no choice. I was going to care for her at home. Soon after diagnosis, she moved into our home. My husband worked and I closed my business in order to care for her. He was my constant support the next eleven years (not three) as my mom and I navigated the very turbulent world of dementia. Not long after her Vascular Dementia diagnosis, she was also diagnosed with Alzheimer's disease. I read as much as I could about her diseases. I read research articles, books, anything I could to learn as much as possible. I reached out to the Alzheimer's Association many times that first year of caregiving. Looking for guidance. The Association was always there for my mom and me; guiding, supporting and always reaching out to me. I knew one day, when my caregiving days were behind me, that I would be a volunteer for the Association who helped me so much.
My mom, Josie, was funny and sweet (mostly). With moments of the "dementia demon", as I lovingly referred to, creeping in from time to time to make life "interesting". The first seven years or so were challenging because of the very common symptom of Sundowning. Every single day my mom would ask to go home... this was a never ending, or so it seemed, question that was repeated over and over and over. Frustrating for me as a caregiver, but so hard for her. After all, she was the one who was ill. I tried my best to answer and keep her calm, as anxiety sometimes grew. Validation and distraction became important tools in my dementia caregiving kit.
Once my mom transitioned from stage 6 to stage 7(severe), she lost her ability to walk. Now in End Stage Alzheimer's and dementia, she was placed on hospice care for the final journey of her life. She was completely bedridden. This journey was another 3 1/2 years. Though she had hospice care, I was still her primary caregiver for the other 23 hours a day. It was the most difficult thing I have ever done. I feel like all the other stages prepared me for the last stage.
Throughout her disease, I knew skin care was very important, but nothing like when she was bedridden. I was a bit neurotic about her skin... from the lotions I used, her bedding, her bed, garments, anything that touched her very delicate skin had to be "Leslee approved". Her hospice team always commented on her skin. It was pristine. In 3 1/2 years she never once had any type of skin breakdown. I believe this had a lot to do with her nutrition, too. For the last few years of her life, she needed her food to be pureed. At first this was a horrifying thought to me, the once Personal Chef, but I embraced it and came up with beautiful ways to make pureed food nutritious and delicious. She enjoyed her meals until the very end of her life.
My sweet, beautiful, hilariously funny mom died on February 11, 2020. I donated her incredible brain to Harvard University and Massachusetts General Hospital after her death; where it was determined that she had a third type of dementia too, Lewy Body. I am incredibly proud that I was with her every step of her journey through dementia.
This year I was invited by the Alzheimer's Association to attend their Community Leaders Summit. An extraordinary experience. The President of the Association spoke and was bold to say "We are in the era of treatment for Alzheimer’s"! This is truly a remarkable moment in the fight against Alzheimer's!
But, we still need a cure. I Walk to End Alzheimer's so we can all get to the end of our lives with our memories intact and celebrate a life well lived.
Please consider donating to My Walk. Or joining my Team, Josie's Journey. We will raise funds to put an end to a devastating disease, honor all who have lived this disease, currently fighting dementia and have fun along the way.
Woody is gearing up for another Walk! Just ask me about Woody... it's a whole other story.
With Love and Gratitude for reading my story and supporting a World without Alzheimer's disease.
Thank you for helping advance Alzheimer's support, care and research.
I have raised
Walk Committee Member