Spring is here, and Maureen continues to be remarkably stable after her hospitalization in November last year. Although she can no longer walk, she tolerates the recliner or her wheelchair for hours at a time, and still gets physical therapy regularly, and continues to surprise us with her strength, humor, tenderness, and expressiveness.
Too often barriers to access of high quality palliative and hospice care remain, despite the exponential growth of hospitals with palliative care teams over the last two decades. What’s worse is that healthcare costs for dementia patients are substantially higher than for those with other serious diseases and illness, and place a large financial burden on families. The Center to Advance Palliative Care based at Mount Sinai in New York City argues that to meet the growing demand, newer models of community care in nursing homes, patients’ homes, and hospice facilities are needed.
Here in Rome we are remarkably blessed to be partnering with the non-profit foundation Antea, through the free Italian healthcare system, which provides us with in-home hospice care for Maureen. Right now we are having daily nurse visits, weekly doctor check-ups, and a 24-7 help line to call when needed. Antea also provided us with a hospital bed and medical and medicine supplies, which has greatly reduced the number of times I have to run to the pharmacy. Much more importantly, they are teams of experienced professionals, and treat me and my helpers as partners in Maureen’s care. It has made a world of difference to have this support.
Antea’s story began in 1987 under leadership of an oncologist, now President Giuseppe Casale, and became a non-profit foundation two years ago. It is part of a national network for palliative care, guaranteed as a right by the 2010 law 38, and written with the assistance of Antea personnel. They describe their story as beginning with a decision to take on a responsibility “to give all our time to those who have little time left, to do our best to offer quality to those who feel abandoned. We chose to do so smiling because if palliative care is interpreted as a holistic approach and not just a simple pharmaceutical therapy, this is an extra something that Antea decided to provide.” Antea serves 150 families in total, with 25 patients in a hospice facility in the Park of Santa Maria della Pieta’ in the Monte Mario area of the city. Teams of doctors and nurses, and as needed, psychologists, physical and occupational therapists, social workers, nurse assistants, spiritual guides, volunteers, and office workers all participate in this amazing mission.
Every single person we have encountered has been simply fantastic, bringing humanity and friendship to our new home. Late in January we moved across the hall to a slightly smaller apartment where we can now sleep in the same room, and it has made a huge difference for us. I no longer set the alarm for 3:30am as I have done for so long to check on Maureen, and another big improvement is that the heat actually works much better and can be regulated on individual radiators. We loved our big terrace, but in the winter it was drafty in the living room and Maureen always needed a small electric heater nearby. In this apartment the terrace was made into a veranda, and so we have even more light, the plants love it, and it makes our living room much cozier. Plus we have a working fireplace!
All this to say, our days are filled with tender moments, laughter, joy, making new recipes for Maureen, and we even survived COVID in our helpers’ lives without getting it ourselves (Maureen finally got her third shot which had been scheduled for November). Right now we are recovering from colds and coughs but the antibiotics we just started are working and we’re already feeling better. I am so grateful for every single day. We are truly blessed!
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| Antea's facility in Rome |
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| The living room in our new place |
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| Maureen smiling in the sun |
