As told to Sarah Seltzer
When many people hear the word hospice they think it is synonymous with “The End.” But hospice is so much more than that. In my family’s case, hospice care was a gift — it helped my mother live an additional year and a half, and it gave my sister and me peace of mind. When she did die, we were able to mourn her without having any regrets about the decisions we made about her care.
Our story began in 2011 when we started to notice changes in my mother. She was diagnosed with a form of dementia and, as her condition deteriorated, we eventually needed home care. However, the quality of the home care attendants was uneven at best, and I found myself calling the agency over and over again looking for replacements. After my mother fell and broke her hip, my dad felt like he couldn’t care for her at home, even with a home health aide. At that point, she was unable to feed herself. She did not speak much; she often became agitated and started screaming.
We toured several facilities and I always left in tears — I couldn’t deal with the idea of my mother just sitting in a room in a nursing home. At the same time, my father was afraid that if she came home, she’d be stuck in a bedroom until she died. After some discussion, we realized that I could accommodate her in my home by doing some construction and hiring a home health aide. We built her a bedroom on the ground floor of the house and widened the doors in the house to accommodate her wheelchair. When the weather was nice, we were able to push her outside so she could sit by the pool. It worked for a time, but she kept ending up in the hospital — with a UTI, pneumonia, high blood pressure, and other health problems.
And then she had a heart attack. The doctors didn’t expect her to survive, but she did — but they told us that she was close to the end. We were open to the idea of hospice care, but the first facility we met with said that their palliative care procedures did not include giving patients antibiotics for infections. The idea of my mother dying from an untreated UTI seemed unconscionable; even cruel. I called a friend who worked at MJHS Hospice and she told me that they would, without question, give her antibiotics for a routine infection.
Beginning home hospice care was a total game changer. It felt like a huge burden was lifted from my shoulders. We had a home health aide as well as visits from hospice staff, including a nurse, a rabbi, a music therapist, and a social worker who also met with my dad. The music therapist brought joy to both of my parents, learning some of their favorite songs and having sing-a-longs with them.
No stone was left unturned. We were able to avoid the hospital because routine medical issues were dealt with at home. Someone even came every week to arrange my mother’s pillbox.
Hospice care helped my mother survive longer than anyone thought she would. Toward the end of her life, they arranged for a night nurse to sit up with her all night so that I could sleep. (Before that, I would jump up every hour and check the video monitor I had set up in her room.) She received whatever medicines she needed to keep her comfortable around the clock. My mom died peacefully at home surrounded by her family — the way we all hope to leave this world.
After her heart attack, my mom had been given 24 hours to live. Instead, she had another 18 months, during which she was surrounded by loving family. It was nothing short of a miracle.
This post is part of a series supported by MJHS Health System and UJA-Federation of New York to
raise awareness and facilitate conversations about end of life care in a Jewish context.
To learn more about the role of hospice and its value to patients and families click here.
