When end of life care becomes a gift of love
Judith Palmer Harik had a PhD in comparative politics and taught political science at the American University in Beirut. She was also a writer, an artist and an accomplished equestrian. She was also an amazing mother.
When she became incapacitated with vascular dementia four years ago, her daughter, Vaira Harik, got a hospital bed and other necessary medical equipment and moved her into her own dining room. Vaira’s partner, Kathy Rosenthal, made her a beautiful quilt that was covered with photos of her two children, her art and other loved ones, to comfort her and make her feel surrounded by love.
“She was really my heart,” Vaira said. “I loved her so much. We had a wonderful relationship our entire lives. It was my honor to do for her what she did for me as a baby.”
At some point Judy needed more services, so her daughter called the Visiting Nurse Association (VNA) of Cape Cod Hospice and Palliative Care. She entered their care on February 22, 2022 and continued with them for two years and eight months until her death on October 11, 2024.
Deciding to bring in hospice is like crossing an emotional bridge, Vaira said, because the whole point of hospice is that it is the final phase of life. It doesn’t mean your loved one is going to die next week, but it does mean you are deciding to suspend efforts to cure things.
“It takes a level of acceptance within the person, if they are sentient, and among the family,” she said. “We, as humans, don’t touch that hot stove of emotion and dying and mortality willingly. It’s easy to put it off.”
Lifelines During a Hard Time
Judy ended up being one of the VNA Hospice’s longest-term patients. When a patient signs on to care with the VNA Hospice, the care contract is for six months. After that, Susan Egan, NP, visits the patients to see if they still qualify for hospice care. If the patient has declined in any way, they are recertified for an additional two months. As long as the patient’s condition continues to decline, they can stay on hospice indefinitely.
“As long as there is a change, Medicare allows them to be recertified,” Egan said. “They are pretty generous with concurring in keeping them on. Vaira kept copious records of her mother’s health that really allowed us to track her decline. It’s because of her vigilance with her mom that she was able to continue services. She fought to keep her mom as comfortable as possible. Nothing slipped by her.”
Vaira said that even though she was her mother’s sole caregiver, the hospice nurses and aids were a lifeline to help her during that heartbreaking time.
“The people who work in hospice are wonderful people,” Vaira said. “The VNA crew are exceptional to a person. I have nothing but praise and love for everyone who was here trying to help her – and me. I think they were more important to me than to her.”
A VNA Hospice nurse would visit every few weeks to check on Judy. The VNA Hospice music therapist Cara Brindisi also visited. On the days Vaira worked at her job as the assistant county administrator for Barnstable County, an aide would come in to feed Judy lunch. The rest of the time, Vaira took care of her. She fed her, bathed her, cut her hair and did everything she could to make her feel loved, safe and protected, just the same way Vaira’s parents did for Vaira’s grandmother at the end of her life.
“People can do this, and hospice can help,” Vaira said. “We do not have to put our people in the care of strangers unless there are extreme circumstances.”
Vaira acknowledges that it can be hard and taxing work, and it is definitely heartbreakingly sad to watch someone you love go downhill. But her mother was going to decline no matter where she got her care, and she couldn’t imagine letting her mother go through that experience alone.
As it turned out, Judy died with Vaira right by her side. For Vaira, it was like completing a perfect circle of life.
“It is my greatest consolation now that she has passed that I was able to do that for her,” she said. “As a caregiver you emerge on the other side with a well of love and consolation that is extraordinary. This is the most important thing that I have ever done. For me, it opened up so much love.”
