Thank you hospice.
Since reading Dr. Atul Gwande’s New Yorker Magazine article, Letting Go, a piece that describes the end of life (see my recent posting about this article), I’ve been thinking a lot about our hospice experience with a program in Northern Virginia. For some time I’ve wanted to write about those four months, but it’s a bit tricky. Hospice comes into your life when a friend or loved on is dying, in our case, my husband’s mother. Writing about the end of life in this situation sometimes feels uncomfortable, in a way like shouting, “What a great way to die!”
However, Dr. Gwande’s article inspired me to share a bit about our hospice experience.
About four months before she died, my husband’s mother was sent by ambulance to the hospital, ostensibly for dehydration. During her 30 hours as a patient, Mother received good care, but not care that was especially needed. After discharge she was disoriented, frightened and jumpy, and her dementia symptoms worsened. She had not liked the hospital. So we searched for another direction, and the idea of hospice came through recommendations of our minister and the administrators of Mother’s assisted living community,
So she became part of a hospice program, and that changed everything.
For nearly four months Mother was assisted by amazing people — doctors, nurses, nursing assistants, social workers, a chaplain. These kind and gentle caregivers came to see her regularly, explaining at every opportunity — to Mother and to us — what was happening. A hospital bed was delivered, and in time, other special equipment as well as oxygen. Medications were prescribed to keep her pain and breathing under control. If Mother had a medical problem, hospice was called and a solution was found or medication was prescribed. 911 was not called. Most importantly, Mother stayed right there in her apartment surrounded by her much-loved books, family pictures, and familiar furnishings, collected over a lifetime — home health care at its best.
Yet that was only part of the picture. Hospice gave us four activity-filled months with Mother. For three of those months we were able to eat lunches and dinners together and take her out to places she enjoyed, including numerous meals at our home. Together the three of us read at least two novels aloud, looked at family picture albums, and reminisced about Broadway musicals. Until a few days before she died Mother rose in the morning and was helped to dress in clothes she liked.
Before Mother died, hospice gave us the ultimate the gift of time — time to enjoy living, time to say good-bye, and time, nearly 120 more days of it, to say, “We love you.”
To my 91 year old father whose goal was to live to be “at least” 100 and who who was always “fine,” hospice was not an acceptable alternative. Fortunately, there is a separate program of palliative care in Denver which we were able to engage for him. Palliative care allowed him to hold on to his goals and left open the question of whether or not he might decide to go to the hospital at some point in the future. He was able to ease into comfort care without having to let go of his perception that he was still far from death. And I was reassured that his medical status was being closely monitored and that his comfort and quality of life were the highest priorities.
Another advantage of palliative care is that they may be engaged much earlier than hospice. Some elderly participants may even improve so much with palliative care that they “graduate” from the program. We wish that we had learned of palliative care much sooner. Unfortunately, when Dad was hospitalized the only option for aftercare that was presented by the discharge social worker was a skilled nursing facility.
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