Em*, suitably given the position as my godmother, has always led by example– she demonstrates what a open, loving life looks like. Through her I have discovered that life is an illustration of growth, recovery, and spirituality. And by no means am I the only one influenced by her grace and insight. She is a doctor advocating for and supporting those suffering from dementia, as well as their caregivers. Last weekend I saw her for the first time since I started working with the caregiving community. As always, it was incredible to see her, but this meeting held a special significance. I can now appreciate and understand the work the Em does so much more than I ever could have before. Although her education and work focuses on dementia patients, caregivers are never a second thought. She knows the toll caregiving can take, especially when a loved one has a disease as devastating as dementia.

She informed about a type of dementia I’d never heard of, one that is particularly nasty. Frontotemporal degeneration. Or Pick’s disease. The disease affects the judgment center of the brain and deletes the filter we have for “good ideas” and “bad ideas.” Instead ideas become reality, no matter how out-of-character or unsafe. The site, The Other Dementia reveals a shocking fact: “FTD accounts for as many early dementia sufferers as does Alzheimer’s under age 65, and often appears in men and women as young as their thirties.” The disease is hard to diagnose because the symptoms begin appearing slowly and vary from case-to-case.

Em explains that the caregivers of FTD patients deal with such extreme behaviors that they needed a separate support group from Alzheimer’s caregivers. Because patients are prone to inappropriate social behavior, The Association for Frontotemporal Degeneration has created awareness cards for patients and caregivers to hand out, excusing his or her behavior and explaining a little about the disease. Spreading awareness is what prompted me to write this post. FTD moves with stealth so it often takes years to accurately diagnose. But the more people who know about FTD/Pick’s disease, perhaps the sooner it is recognized and the sooner support is sought.

The story of any caregiver is incredibly humbling. With FTD caregivers, I am particularly in awe. I can only imagine the vigilance and courage needed to care for a loved one with the disease.

Over lunch, Em shares with me a particularly moving story of a man caring for his wife with Pick’s disease. She was amazed by his ability to decide that he would have, in his words, a “get to” day rather than a “have to.” By choosing a “get to” day he allows himself to think of his actions as service to his wife rather than a chore. This is a beautiful sentiment. For me, it’s fortunately very easy. I get to go to work to a job I love, I get to take the train downtown giving me time to read, I get to pay rent because I have an apartment I cherish, I get to clean-up because I value order and space (and a bug-free apartment!)– the list could go on. Swapping out “have to” for “get to” transforms aspects of our lives that typically spark anger or resentment into gratitude. Of course, understandably, caregivers may have to work harder to replace the “have to” with “get to.” However, this should never be a reason to stifle feelings of anger, depression or loneliness. No matter how caregivers cope with their responsibilities, they are always prone to isolation, exhaustion, and illness. But there are ways to manage resentment and anger healthily– for me, this is one of them.

*Names has been changed to protect the identity of the patients and caregivers.

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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