Each time a friend or acquaintance experiences an illness or death in the family, I go through the same thought process. When should I call? What should I offer? Will I intrude?
What it really comes down to is this: I should stop dithering around and just do something — just about anything, really — to demonstrate that I am thinking about my friends. It all comes down to being present for the people who need to know that their friends care.
In a thoughtful January op-ed piece New York Times columnist, David Brooks, wrote about The Art of Presence. All of us, he explains, need to develop the ability to understand how and when and be near people who need our assistance and support, especially during times of great stress or loss. Many of us of are not that adept at responding appropriately when people need our help.
“There are no uniformly right responses,” Brooks writes. He also describes how blogger Catherine Woodiwiss shares her family’s experience with trauma and offers what Brooks calls collective wisdom — how to help others in need and the importance of being present (and maybe it’s just being around) when things go wrong in people’s lives.
Just when you think that you have settled the most significant adult child-aging parent issues — when you and your parents have spoken about medical care support, finances, and the range of their end-of-life wishes — along comes another concern to worry about, and it’s one that may be completely out of our control.
We now need to be concerned about the possibility of a parent entering a hospital and assigned to observation status for several days. Observation means that, rather than being officially admitted as a patient, the person is there to be watched, sort of like an out-patient, but not really an out-patient. The problem is, it’s difficult to discover what status a hospital assigns a patient — the two look almost alike with nurses, doctors, hospital rooms, blood pressure checks, etc. Admission and observation do not look that different to the patient and family, and apparently many hospitals are not especially forthcoming with the information.
Why is patient status significant? It’s simple, really. If your parent needs to enter a skilled nursing facility or nursing home after three days of observation status, Medicare will not pay and the family will be required to pay all of the bills, including the hospital costs. For Medicare to pay the bills, a family member must be admitted as a patient for at least three days and not assigned observation status.
Over the past year newspapers and medical or health journals have carried stories about elders and observation, and I share them here so that you can learn as much as you can.
In June 2010 I read a chilling New York Times Magazine article, What Broke My Father’s Heart, by Katy Butler, who described how her father’s heart outlived his brain because a pacemaker kept chugging along. It kept going despite that the rest of his body, due to dementia, was giving up and shutting down. Butler explained how her mother tried to get the pacemaker removed but physicians turned down her request again and again. Also included in the article were descriptions of her mother’s extreme health consequences after years in a caregiving role.
I posted the article under the “must read” section of this blog, where it remains, still timely after several years, and I’ve read it again and again. The reason that I keep re-reading it is that it feels like we all wish for a death without prolonged suffering, ICUs, and electronic shocks to our chests, but most of us do not get what we want.
One small section of the info graphics. Read the description of the survey and see more info graphics in the magazine or visit the More website.
Intrigued by the Next Avenue article, an NBC Today Show interview about the survey, and More magazine’s brief on-line description (the full results will not be posted on-line until late October), I purchased the magazine. The most interesting survey result is that 81 percent of the 751 participating men and women say that they expect to help their parents when the time for helping out arrives. Continue reading →
If you can locate a copy of The New Yorker May 20, 2013 articleThe Sense of An Ending by Rebecca Mead, it’s well worth reading because of its focus on new models of providing care to fragile elders with dementia illnesses in nursing homes. The article extensively describes the Beatitudes Campus in Arizona, but it also mentions The Green House Projectand the Pioneer Network. The Beatitudes model and The Green House Project share many approaches.
So I was excited during dinner with friends last month when one of the people at the table, a neurologist, mentioned The New Yorker article, saying how excited he was to learn about new models that completely change the way we deliver care to fragile elders, especially those with memory impairments. After he spoke at length about the article — which I had not read yet — I shared information and my blog posts about the new Woodland Park Green Houses in Harrisonburg, VA. Our physician friend seemed really eager to learn a lot more.
I”ve spent the past several years learning as much as I can about The Green House Project, primarily because my parents live at Virginia Mennonite Retirement Community (VMRC), where the Woodland Park community recently welcomed new residents. However, I’ve been so focused on this small Virginia project (but huge in spirit and dedication) that I’ve not thought much about how people can share information on the amazing changes that are taking place in long-term nursing care.
Certainly educating neurologists — the physicians all over the country who provide medical care to people with dementia and Alzheimer’s and who may, in the long run, be asked for their thoughts on the types of memory care that are available to families is a path to consider.
If you help to support an aging parent and also like listening to folk music with strong spiritual themes (also called Christian pop), take a few minutes to listen to singer Amy Grant talk about caregiving for her aging father, a retired physician, and how these experiences influence her music.
During the program, broadcast via AARP radio, Grant also speaks about her mother, who had dementia. Grant’s newest album, How Mercy Looks from Here, came out this past spring (2013), and the music is shaped, in part, by the time she has spent supporting her parents.