An Ending Filled with Laughter, Tears and Dignity
Masonicare's mission is to improve the quality of life for seniors through patient-centered (and family inclusive) care. This extends to end-of-life care, which Barbara Cusati discovered in 2014 when she and her family chose Masonicare Partners Home Health & Hospice to provide palliative and hospice care for her father, Angelo Demma.
Moved by the skill, professionalism and compassion displayed by Angelo's caregivers, Barbara and her husband, Ward, have generously chosen to include The Masonic Charity Foundation of Connecticut in their estate plan with a bequest specifically benefiting Masonicare's hospice services.
"Losing my father was a sad experience," Barbara said, "but Masonicare helped make it unforgettable. The memories we have of that time will become peaceful ones for all of us. [Making this bequest] was an easy decision and not something that required any discussion."
One of the greatest achievements for any father, regardless of social class or occupation, is to be seen as a hero in the eyes of his child. Speaking to Barbara, one quickly realizes that Angelo fit the bill.
"He was amazing," Barbara said. "Working for Sealtest, he started out as a milk man delivering dairy products to neighborhood homes and then to markets and grocery stores. He loaded his own trucks, so he had the biggest biceps I've ever seen. He was a great father and provider – soft spoken, never complained, and always grateful for every day. As kids, my sister Lori and I weren't allowed to ride in his truck with him, but we had all the ice cream, milk and half and half you could ever want. No calcium deficiencies in our family."
Angelo worked at Sealtest for 30 years, retiring when he was in his late 50s. Almost immediately, he took a new part-time delivery job with Design Products in Newington. He continued working into his mid-80s because he loved serving others and meeting new people.
When he wasn't on the road, Angelo enjoyed spending time with his wife of 64 years, Rita.
"They loved being social," Barbara recalled. "They were the life of the party. At any wedding or family event, they were the last to leave. Family and friends were everything to them, and I think that's what kept them going for so long."
Several years ago, Angelo was diagnosed with Stage IV lung cancer. As his health deteriorated, Barbara and the rest of the family realized they wouldn't be able to care for him properly on their own.
"Working in healthcare administration, I had some resources available to me that not everyone has," Barbara recalled. "I asked around and Masonicare came very highly recommended by a physician."
Barbara admits that, initially, she had only some understanding of hospice and even less understanding of palliative care. That's not uncommon, says Donna Dow, Director of Hospice Clinical Services at Masonicare Partners. The two disciplines are closely related.
"Think of palliative care as an umbrella under which the focus is improving or maintaining the quality of life and providing comfort to someone with a life-limiting diagnosis," Dow said. "There are no criteria for how long someone might receive palliative care. Hospice falls under that umbrella because the goals are the same – alleviating pain and providing comfort – but it's really geared toward the final stage of life when a patient would forego any life-prolonging treatments to concentrate on getting the most out of the time they have left. Another reason for the confusion is that our culture still has some difficulty accepting the end of life as part of a natural progression. We're not always comfortable talking about or planning for death."
Plus, Dow explained, the availability of acute care facilities and high level of medical technology in our region have led many people to assume incorrectly that any medical problem can be fixed or cured.
Angelo received palliative and hospice care at his home in Wethersfield. Barbara was impressed that Masonicare not only moved quickly to provide the family with all the equipment they would need to keep Angelo comfortable and safe at home – a hospital bed, oxygen, bath seat, commode, etc. – but also reassurance.
"The people we met from Masonicare were educators for us as well as healthcare professionals," Barbara said. "They really talked to us and explained to us the different stages that our dad would go through. It made it less frightening. We took some comfort in knowing what to expect. I would never have thought I'd have the strength to do what I did. They showed my sister and me how to administer his morphine, regulate his oxygen if he wasn't breathing well, and how to lift him and transport him safely to the bathroom."
But as Barbara and Lori watched Angelo's nurse massage him, shave him, comb his hair, and talk to him, they wondered what it must be like to make caring for the terminally ill a full-time profession. Where, they asked, was the reward in work that seemed on the surface to be so … sad?
"His caregivers all felt a sense of honor in being able to provide someone with comfort at the end of life," Barbara said. "They see it as the final gift they can give."
"Those of us who've worked in hospice for a while know that the outcome will be death," Dow said, "but we don't focus on death. We focus on what we can do to make this journey, be it over a span of months or weeks or days, so much richer and more comfortable for the patient and the family. The reward for us comes in accomplishing that part of our mission."
The last week of Angelo's life, Barbara and Lori lived at their parents' condo. Together, they shared in moments of reflection and reminiscence, celebrated tiny victories, and found humor in some unexpected (and, unfortunately, unrepeatable) ways.
"My dad was never in pain," Barbara said. "He was alert enough at the end to ask us to have certain family members visit him before he died. He spoke to every person individually and said the most touching and incredible things. He was at peace, and a big reason for that was because we were able to manage his care so well. He was conscious until 18 hours before he died."
Angelo passed away in his sleep during the early morning hours of September 7, 2014. He'd spared his family the pain of witnessing his last breaths – a final gift, they believe, to those he loved.
"The experience of using Masonicare impacted us so greatly," Barbara said. "I have friends who have lost loved ones and, in some cases, the ending did not go as well. But our ending was the best you could possibly have."
Thanks to donors' gifts to The Masonic Charity Foundation of Connecticut, Masonicare Home Health & Hospice (MHHH) will be able to provide welcome packets to admitting hospice patients. These packets contain small wash basins, oral care products, disposable wash cloths, Peri-Wash and other personal care items.
Although they enhance patient comfort, these items are not considered medically necessary and are therefore not paid for by any other source. MHHH staff had found that family members needed to go shopping for items they didn't already have on hand, taking them away from the person receiving care. By making personal care items available to hospice patients at admission, Masonicare hopes to give families more time to spend with their loved ones when every hour and every minute is precious.
Your gift to The Masonic Charity Foundation will bring comfort to a Masonicare resident or patient in need. To find out how you can support The Foundation or to make a gift, please call 203-679-5555 or 800-562-3952 or visit masonicare.org/mcf.