“My life experiences have helped me believe I could create something bigger than myself. Seeing those in need and knowing I had the skills to do something about it was compelling.”
En español | Everyone thinks hospice is a resource that will help them through the end of their life, but to participate in hospice you must have a home and someone to provide round-the-clock care. People who don’t have that often tragically die alone. Hildegard House provides that home and substitute family, so terminally ill people can die in dignity, surrounded by love.
Why there’s such a need
Before starting Hildegard House in Louisville,KY, I worked as a palliative care nurse practitioner at a local community hospital. Once someone could no longer be helped by medical care, we had to discharge them, even if they had no place to go and only days or weeks to live. We would give homeless people taxi fare to go to their shelter to die, or send others with no family back to their home alone. It was heartbreaking to see this.
Of course, you can pay for a caregiver if you have the money, or get end-of-life care in a long-term care or nursing-home facility, but you have to pay room and board. And you can’t qualify for Medicaid to pay those charges until your total assets fall below $2,000.
A replacement for relatives
We are not a licensed healthcare facility, but instead are a substitute for the person’s own home. We have one part-time nurse who sets up the medications provided by hospice, but otherwise we take the place of family for up to three people simultaneously at the end of their lives. Our house is part of a small but growing network of “comfort care” homes which got their start during the HIV/AIDS epidemic in the 1980s for dying gay men who had been estranged from their families.
We don’t charge fees and we don’t bill insurance companies. Instead, we’re powered by the sixty-five loving volunteers who bathe, feed, hug and interact with each resident. We survive on financial and in-kind donations.
I have found that people are so much more generous than I had even hoped. An angelic local general contractor completely renovated the old convent we bought for the home, while foundations, businesses, neighbors and sometimes the family of a resident help us pay our bills.
Don’t be afraid to tap your networks
I tell people I have been preparing for this role for all of my 62 years. Before working at the community hospital, I had been a tenured professor of nursing. I was allowed to take tuition-free classes, so I got an Executive MBA because, well, why not? This has helped me understand how to read the financial statements and manage the business aspects of the home. Once I ran for city council, and while I lost (by 40 votes!), I learned to feel comfortable doing things like speaking in public, knocking on doors or asking for money. All my experiences have given me so many valuable networks — in the worlds of education, public health, nonprofits and the like — which I have been able to tap for Hildegard House. I had even taken up master gardening for a while, and the people I met take care of our home’s beautiful courtyard garden.
It’s a blessing to help
We’ve been open for two years and so far, have served 62 people who typically stay a few weeks to a few months. Some have been homeless or without family, like Jim, who is also a veteran. He had liver cancer and had been spending his last months on friends’ couches. Jim was here six weeks, and told us every day how grateful he was. We provided him a death with dignity, and after he died and we got in touch with a veterans’ group, he got a dignified burial, too.
Others have had family, like Johnny, who was being cared for by his grandchildren with young families of their own since his wife had died six months earlier. He had stomach cancer and had had a stroke. Johnny hated being a burden to his grandkids but was fearful of dying alone. After his grandchildren brought him here, they stayed until visiting hours ended in the evening; he died that night. Some former residents have had relatives, but either they worked or lived across the country or around the globe and couldn’t provide the 24-hour care that hospice requires.
Allow yourself to be inspired
Our house is named for a 12th-century German Benedictine healer, mystic and saint, Hildegard of Bingen. I’ve been inspired by her since I was a teenager. She was an herbalist and contemplative who tended to the dying and probably had the first hospice, although it wasn’t called that at the time. Hildegard helped me believe we could create this house.
I always tell people to follow your dreams. Don’t say you can’t do it. Be flexible. And most important, believe in miracles. They can come true.