Whether it is offering comfort, assistance, or solace to a family member, spouse or friend on dialysis, caregiving is one of the most important (and rewarding) acts that a person can perform for another. However, it many times goes unnoticed, unappreciated, or just taken for granted. November is a month for caring, sharing, and giving thanks. Thanksgiving Day will be celebrated now and ironically, it is National Caregivers Month.
How appropriate! Native Americans, who provided food, sustenance, and support to our Pilgrim forefathers, were truly our first caregivers. As then, our era today needs the support for those who take care of their loved ones in need.
One of the reasons that caregiving has evolved into a $265 Billion Dollar per year altruistic need (U.S.) is because of the increased longevity of life. It is estimated that in my state of Massachusetts alone the figure approaches $4 Billion Dollars a year. Much of this is due to advanced medical technology, but we also need to factor in the caretakers role. Caregiving is a universal undertaking of unforeseen magnanimous proportions. Therefore, more attention should be devoted to this cause.
So what does this have to do with dialysis?
In my book, Poignant Moments . . ., “Linda Alexander . . . points out that, “Dialysis patients have presented larger interpersonal problems for health care professionals to consider than many other chronic groups . . .” She goes on to explain “. . . their care entails attendance to variables not usually included in treatment plans. . . .”
Here are just a few personal characteristics that ESRD caregivers face day in and day out with their care receivers:
• Acute and chronic anxiety
• Dependency
• Depression
• Restlessness
• Anger
• Complaintiveness
• Non compliance
And there are many more!
When there is a choice, home dialysis, whether it is PD or HD, is among several options loved ones can make decisions. A time that, 33-year home hemodialysis caregiver Marlene Axtmann recently said to me, she was thankful for having her loving husband home during the holidays.
But what do we have here?-we have approximately 300,000 thwarted victims of ESRD by a 1973 noble piece of legislation. Yet at the same time, Medicare does not allow for payments for dialysis caregiving, never mind an optimal health treatment plan or self-education for those afflicted. Caregivers for ESRD patients are not well known. Look at the internet discussion boards. Com’on folks we are few and far between. “There is a big gap there” as somebody in the know recently commented to me. Where are we, or for that matter, where are all caregivers for all chronic diseases recognized? It is in November-National Caregivers Month.
Let us remember, “You’re not alone.”
Caregiving comes from the heart, from the soul, from the inner most part of one’s self. Sometimes there is a choice. Sometimes you have no choice. Whether you feel you have alternatives or not, a caregiver frequently will be undertaking insurmountable complexities. It can be a trauma like any other. Dialysis caregiving often takes more than just psychological soothing. It takes on a technical aspect and commitment in knowing that there is not a cure; there is no hope, unless the care receiver stays on board; on board a ship that began in the sixties and is now surfacing after years of a non-responsive general public awareness.
Home dialysis offers a more personal approach, including comfort, less arduous treatment, and empathy from professional caregivers. For these reasons, I am thankful during this time of reflection for having had the opportunity to care for someone I loved on home dialysis.
As 85-year-old Jurgen Hesse, dialysis author and patient says, “What do people think we terminally ill people want before anything else? We want someone to give a bleep for us, someone who offers us his or her care…”
John Francis Wissler is author of Poignant Moments . . . A Caregiver’s Perspective (BOOKSURGE, LLC an Amazon.com Company isbn 1-4196-1042-2), a memoir recounting his 12 years living with Lois, ESRD, in-center hemodialysis, peritoneal dialysis, and ultimately home hemodialysis. Currently he is writing a play script based on his book.