I have a favorite uncle who is dying. While he has type 2 diabetes and Parkinson's disease, it is 4th stage melanoma that is somewhat unexpectedly taking him out. Diagnosed just six weeks ago after finding a lump under one arm that was already inoperable, he is now receiving in-home hospice care from the local Catholic hospital, including periodic visits separately from a nurse practitioner and a physician. The family is completely preoccupied with trying to provide pain management and to keep his dignity intact. I said goodbye to him in recent days, knowing I would not likely return to his bedside hundreds of miles from my home before he passes or slips into a coma.
As I struggled for what to say to him, I opened a daybook of faith I keep at bedside by Henri J. M. Nouwen, Bread for the Journey. The pages broke open to May 15th with a tiny essay entitled "Dying with Grateful Hearts." Let me share it:
"We often wonder how death will occur for us. Through illness, accident, war, or a natural disaster? Will our deaths happen suddenly or gradually? There are no answers for these questions, so we really should not spend time worrying about them. We don't know how our lives will end, and this is a blessed ignorance! But there is an important question that we should consider: When our time to die comes, will we die in such a way that those we leave behind will not be devastated by grief or left with feelings of shame or guilt? How we leave others depends largely on how we prepare ourselves for death. When we are able to die with grateful hearts, grateful to God and our families and friends, our deaths can become sources of life for others1."
There is a strong element of emotional strength and dignity in these words. But there is also the need for physical and psychological dignity in dying, especially where we are most vulnerable. Among our greatest vulnerabilities is toileting. The inability to quickly and reach the toilet when urgency strikes can become a preoccupation. In those who have lost their ambulation, it is the fear of not getting assistance in time and the fear of sustaining injury from falling. For those with dementia, it is the fear of not finding the toilet. And then the embarrassment of an accident looms. The episode is degrading and demeaning. It affects the dignity of caregivers as well, at any age.
Continence care - including skin care - always includes sensitivity and empathy. Be there for those who need you and don't hesitate to address and find ways of responding. This means clearing pathways, raising toilet seats, organizing timed toileting schedules, altering attire so it is easily removable, and exploring devices, products, and medications that can help to manage any and all circumstances. Be practical, not judgmental. This includes comfort and protection against skin breakdown in those final days and weeks.
1Nouwen HJM, Bread for the Journey (1985), Harper and Collins, San Francisco.
Published On: June 03, 2011