A Rabbi Confronts Frontotemporal Dementia — “The cruelest disease you never hear of“

Editor’s Note: Rabbi and Cantor Vicki Axe recently stepped down as spiritual leader of Congregation Shir Ami in Greenwich, Connecticut, to care for her husband. She contributed this essay as a response to a segment on the CBS 60 Minutes program about Frontotemporal Dementia, the condition affecting her husband. You can see more information about the 60 Minutes segment here (subscription required to view the segment).

The 60 Minute piece on Frontotemporal Dementia (FTD) was excellent. I am grateful for the producers who saw the need to bring this “cruel disease” to light, and the brave souls who told their heart wrenching stories. It was a good beginning with so much more to tell and understand about this tragic disease.

Someone said that FTD is like Alzheimers on steroids!

In my research, I came across the website of The Association for Frontotemporal Degeneration. It has become my bible for extensive information and help in caring for my husband, Harold. It is through this site that I found two closed Facebook groups, one for caregivers of those with FTD, and the other specifically for spouses of those with FTD. The postings are tragic, inspirational, heartbreaking, heartwarming, and a lifesaver in this lonely journey.

The hardest part for me is my husband’s loss of empathy which means the loss of my life-mate.

Harold can’t speak or write at all, but still writes on his phone to communicate. This can be challenging with his loss of spelling, grammar and syntax. In the context of devastating, I am very lucky because he hasn’t become aggressive or combative, but his loss of empathy is very lonely and his loss of “mojo” is beyond sad. We have sweet intimate moments when I help him with grooming and dressing — he is so welcoming of my help. And as a practicing Jewish couple, (I am a rabbi) we still “make Shabbat” every Friday night at our table meticulously set by him with white tablecloth and our best china, standing arm-in-arm in a warm embrace with our heads tilted into each other while I chant the traditional blessings.

When he could still speak in the earliest stages of primary progressive aphasia and apraxia of speech, he shared that one of the greatest sources of sadness for him was that he could no longer recite kaddish, the prayer of mourning one recites yearly on the anniversary of the death of a loved one.

Taking away driving after several accidents — thank God no one was hurt — was difficult, but necessary. At our urging he retired from his Ohio and NY medical practices last June after 40+ years. He had been communicating with his allergy patients entirely on paper or on his phone. We made a retirement party in each of his practices on his final day of offices hours. His many loyal patients were in tears as they said goodbye to the doctor who, in their words, had changed their lives. Ohio patients told stories about how they were able to work their farms and care for their animals, and NY patients told stories about keeping their beloved pets and running marathons. They all proudly shared how many years — for some, decades —they had been coming to him.

For me, this is a profoundly sad journey. As I said before, I have lost my life-mate of 48 years. He is at the same time like a neurologically impaired senior and like a toddler without a sense of the world outside of himself. I had thought the onset was about 10 years ago with the progressive loss of speech, and responded with anger and frustration to his self-centered, narcissistic behaviors. Once I realized that his behaviors were a manifestation of his disease, I realized that this all started years ago — a mind-boggling revelation when I think of specific incidents of dismay — dare I say rage? — at his lack of empathy. But it brought me a sense of peace and the ability to treat him with kindness and patience. The tears of anger have turned to tears of grief as I watch him struggle or obsess with the simplest of tasks.

He has now added PSP — Progressive Supranuclear Palsy — to his diagnosis, which brings progressive loss of strength and bodily functions. One of the biggest worries, which they referred to in the 60 Minutes piece, is the swallow reflex. A second swallow study will be important to know how that has progressed since the first one in October 2018.

We are very blessed with our four sons and their life-mates. They are so supportive with real hands-on help and support. Even their young children (5, 4 and 2) immediately form their little hands into the ASL sign for I LOVE YOU whenever they see Grandpa! Some of the most tragic postings on the spouse caregivers Facebook page is about how uncaring their children and other family members are. We are blessed.

To care for him, I stepped down from my congregational responsibilities after the High Holy Days with Simchat Torah my final service. I’ve now added handyman, bookkeeper and caregiver to my resume! I miss my work which I love so much, but his needs are very great and will only get worse, so I know I made the right decision.

He was always “the wind beneath my wings” as I forged my sacred career and raised our four precious sons, and now it’s my turn to hold him up.