I was blessed to be my Mother's solo full-time caregiver for 5+ years. Stroke brought about Wernicke's Aphasia, and in time, the dementia presented itself. Within the first few months of caregiving, I found no articles or books on solo full-time caregiving, so I decided to keep my notes and journal up to date, with the intention of publishing a book on how solo full-time caregiving got done. All of the reading I came across stressed the importance of putting together a caregiving team, so that the primary caregiver does not burn out. In our case, such a team did not come to be a reality.
My Mother died on November 10, 2018 and I finished my book a few months ago. It is now self-published on Amazon, titled "Just Before the Stroke of Seven" and my goal is to let other caregivers know that it is available for them to read. If nothing else, it may let someone else know that they are not the only solo full-time caregiver around. The book is part "how-to" and part narrative. I am brutally honest in my writing, sharing where I did well and where I did a miserable job as Mom's caregiver. I do not claim to have all of the answers for other caregivers. I do not even know all of the questions - only my own, born from experience.
It is only in hindsight that I am able to look back on, and read in my book, about some things I may have done differently so as to provide better care for my Mother. I still do not know what I might have done to put together a caregiving team. All I could do was ask friends and family, and 99.9% of the time the answer was either silence about my request, or "No, I cannot do that, Aaron."
The dangers of being a solo full-time caregiver are extreme, both to the care recipient and to the care giver. Though I am working my way through the aftermath of those years, it has taken a toll on me. Grieving the loss of my Mother, coupled with caregiver burnout, is quite a juggernaut to deal with. Faith in G-d, along with my spiritual practices, are keeping me going. I'll never know if reading about others who did this sacred duty alone would have helped keep me better grounded. I pray that my book helps someone else in that way.
Shalom,
Aaron Ainbinder
Author
Just Before the Stroke of Seven
A Caregiver's Tour of Stroke, Aphasia and Dementia