by Bob Kohut
I first learned of hospice care when an older neighbor of mine, who was like a father to me, chose to discontinue his agonizing treatment for liver cancer and go home to die. This was in the late 1980’s and there were still a lot of people who couldn’t understand why he didn’t choose to fight on till the painful and inevitable end. He died surrounded by family and friends.
My personal hospice story began in 2006, when my mother suffered her third stroke in less than six weeks, which put her into the hospital in a comatose state. She had been living alone at age 93 when we finally convinced her it was time for an assisted living center, but the strokes intervened and she ended up in a nursing home.
After the final stroke they found evidence of a severe infection of the lungs so we decided to try an intensive antibiotic treatment for a few days as a final attempt to bring her back. Letting go was hard, but after 10 days of antibiotics and 2 rounds of kidney dialysis, the doctors sat us down one day and told us there was nothing left to do.
I was shocked to learn that remaining in the hospital was not an option. We had to find a facility that offered hospice care, and the local hospital where she was didn’t offer it. However, the nursing home where she had been did, and that was my first choice for where to send her for her final days.
My brother disagreed. He wanted to bring her to his home where someone could be with her at all times. My sister-in-law is a nurse and that seemed like a good solution, but I was concerned about the long term impact on my brother as he would always have to look into that room where she breathed her last.
We were having a family meeting in a waiting room at the hospital when my eldest son arrived. I explained the options we were considering and he looked at us like we had all lost our minds since we couldn’t see the obvious solution. So he said:
Why don’t we bring her to her own home to die?
Her beloved condominium had been empty since the first stroke and that is where we took her. We moved in with her, instead of moving her in with us. The hospital recommended a hospice provider and to say they were wonderful was an understatement.
A representative arrived at the hospital within an hour of our call to discuss arrangements with us. They explained what they would provide and how it would all work.
The following day my sister-in-law and I prepared my mother’s bedroom for the arrival of a special hospital bed and assorted supplies. An ambulance brought her home and a hospice nurse arrived shortly thereafter to start a morphine drip and to explain what we were to do to monitor the situation. They told us a hospice nurse came by every day to spend time both with her and with us until the end came and there was someone available by phone, 24 hours a day. .
And then the wait began. My brother and I and our wives slept there till the end. My adult sons joined us several nights. One of my mother’s sisters and a brother came from New Jersey, where they grew up, to be with her. Another brother who lived in the area was there, with his wife and children and grandchildren.
And then something very beautiful began to happen. We spent our time together, not commiserating about what was happening to her at the end, but relieving the shared experiences of her wonderful life. And there were so many to talk about.
While she was still comatose the whole time, late at night when all was quiet and everyone else was asleep, I would awake with a feeling her spirit was floating around the room somewhere. She was, I am convinced, there with us as we waited for her stubborn body to finally give up.
It took seven days, but she finally took her final breath, surrounded by her children, her grandchildren, her siblings, and her nieces, nephews and grand nieces and nephews.
For many of you, taking your loved one to his or her own home might not be a viable option. Perhaps, but the lesson I sincerely hope you draw from my hospice story is that the decision you make reflect what your loved one would want, even if it is not the most convenient thing to do. Choosing a hospice care arrangement in an environment where survivors can be together as long as they want and as often as they want is simply better. Being together helps ease the pain. Whatever choice you make, I wish you the very best.