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

"Smoke Glass Window," Photo by Emma Trevisan on Unsplash

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.

About Rabbi Vicki Axe
Rabbi Axe received a Bachelor of Music Education from Temple University in Philadelphia, PA, MA in Music Education from the Ohio State University in Columbus, OH, and her Degree in Sacred Music and ordination as Cantor from the Hebrew Union College-Jewish Institute of Religion, Debbie Friedman School of Sacred Music. In 2008 Rabbi Axe was awarded a Doctor of Music, honorous causa from HUC-JIR, and Rabbinic Ordination from the Rabbinical Academy of America and received her Doctor of Ministry in Pastoral Care and Counseling from HUC-JIR in 2016. A master teacher, Rabbi Axe has prepared hundreds of children for their B’nai Mitzvah, taught cantorial and rabbinic students at the Academy of Jewish Religion and Hebrew Union College-Jewish Institute of Religion, presented workshops on Jewish music and Jewish life for public schools, civic groups, and the Union for Reform Judaism, and visited many congregations as Scholar-in-Residence. Known for her talent and passion in the areas of Jewish education, conducting, and creative programming, as well as liturgical art, Rabbi Axe has served on the conducting faculty of the North American Jewish Choral Festival since 1997, directed URJ regional and national choirs, both adults and children, and was featured in programs of Jewish interest with Dave Brubeck and Marvin Hamlisch, for whom she also prepared a choir. Blessed with the gift of voice, Rabbi Axe feels as comfortable on the concert stage with a symphony orchestra as she does in the classroom with an audience of preschoolers or seniors. Her greatest joy is teaching and pastoral care which she offers from the bima, in the classroom, at a hospital bed, or on a stage. A national leader in the Reform Movement, Rabbi Axe is a past president of both the American Conference of Cantors, and the HUC-JIR Debbie Friedman School of Sacred Music Cantorial Alumni Association, served on the Board of the Union for Reform Judaism, and currently serves on the School of Sacred Music Advisory Board. Rabbi Axe also serves her local community as a member of the Jewish Educators and Teen Professional Councils of Greenwich and Stamford, the Greenwich JNF Health and Healing Center Advisory Council, the Greenwich Hospital Clinical Pastoral Education (CPE) Professional Consultation Committee, and is a past officer of the Greenwich Fellowship of Clergy. Her greatest role is as wife to Dr. Harold Axe, and mother to their four sons, Judah and his wife Ellie, Noah and his wife Amira, Gabriel, and Daniel, all twenty and thirty-something, and most recently grandmother to Maren and Jillian.

4 Comments

  1. Heartbreaking and not nearly as uncommon as we might think. I pray for all who are slowly losing beloveds.

  2. Reading this essay, brought me to tears. To tears for more than one reason. The first – theobvious, my heart goes out to his woman and the degree of strength and fortitude she exudes. Second, it sadly brings back memories of when I was a quadriplegic…and coukd do nothing. I couldn’t speak, barely see and basically devestated!! Everything had to be done for me….the reason for my mentioning this is…as the recipient of total care…if I may speak on behalf of so many others…THANK YOU….thank you for perservering, tolerating difficult situations, being exhausted, showing more patience than any one individual should be capable of, rearranging your life, foregoing pleasures….
    Beneath the anger – frustration, the sadness – the jealousy – the sense of hoplesness…is a heart filled with gratitude. Thank you!

  3. My husband Ronald David Oberman passed away November 2019 from this very disease, we fought as best we could for 10 years , but FTD won. I have lost my heart.

  4. So very sad. I am glad to hear you have shared 48 years with him. I only had 37 years. U & yr family r in my prayers. Blessings to all

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