Years ago Dad’s doctor suggested that we contact a local hospice for support. We didn’t feel that Dad was at the end of the road, but we were told that hospice would provide care for someone with a terminal illness even if the end of life was likely distant. A hospice social worker came by and we filled out some forms and she assured us that some of their clients had been with them for 5 years. I was a little surprised to learn that, but in the end we decided to see what it would be like–we wanted some help after all. Later I thought they seemed a little eager to relax guidelines, perhaps more for economic than humanitarian reasons.
In any case, we we weren’t prepared for the onslaught that followed. I believe we had visits from five different professionals each week. Social worker, nurse, chaplain, administrator, and another I can’t recall. Clearly we were helping keep some people employed!
Mom was overwhelmed by all the coming and going, keeping track of appointments or feeling surprised by unscheduled visits, keeping the house clean for visitors, and more. Despite this we kept it up, and tried to deal with what came to feel like intrusions.
All that aside, the real difficulty emerged from the nursing care. Many of our concerns about Dad’s condition were met the response “Well, you have to expect that to happen with this illness. That’s what happens near the end.” We were told that if Dad had a medical emergency to call hospice rather than 911. I asked if Dad was choking, was it OK to call 911–and was told that would be alright.
My sense was that the hospice workers expected him to die soon, that any symptom he displayed could be chalked up to the main diagnosis of Alzheimer’s and, as a result, meticulous attention to various symptoms was not really required.
One day, when the nurse had finished her cursory examination of Dad, I noticed that one of his ankles was markedly more swollen than the other. She didn’t seem to think much about it, but I was concerned enough to get him to the doctor the next day, and he confirmed the diagnosis of a blood clot via MRI. Dad was immediately admitted to the hospital and had a filter placed in the vein in his groin to help reduce the chances of a blood clot getting to his heart or lungs. Whew! Sometimes it is important to pipe up when it looks like something is going wrong, even if you are not an expert.
Now, don’t get me wrong, I think hospices are great and they are a tremendous help to many, many people. And the hospice workers have a very tough job, and likely become somewhat inured to suffering and death in the course of their work. My point is that under such circumstances, in the long shadow of death, one’s broader vision may be obscured by a focus on the terminal nature of the diagnosis to the extent that acute, potentially deadly, but treatable, illnesses become less visible. So, health care workers and family members should always be on guard against this natural tendency.
Overall our impression was that Dad had entered the hospice program prematurely and that most of the workers saw him as having a relatively short life ahead, as I expect is the case for most of their patients. I think the subtle emotional effect on us was a bit disheartening. We felt more glum and wondered whether we were just not on the right wavelength if we felt otherwise. In the end we dropped hospice care for Dad, but affirmed that in the future, hopefully distant future, we could well call on them again.
We reclaimed our more peaceful home life–uninterrupted by a stampede of well-meaning caregivers– felt our spirits lift, and resolved to keep a keen eye open to the unexpected and not to be blinded by the expected.
All this about six years ago now.