Hardly What We Expected July 2, 2012Posted by ijwoods in Blog+.
Tags: caregiver, caregiving, preparations
There’s a picture of my parents I keep in my office that I really love; I think of it as a novel in a snapshot. I would guess that mom is around 19 and my father 21. Mom looks beautiful, radiant and very happy. Her quiet internal strength is visible to me even at that young age. She looks very mature compared to my father.
My father looks to me like a young Frank Sinatra. I can’t read what’s going through his mind but if I had to guess he is already working on how he is going to take good care of his future family. His sleeves are rolled up and he’s ready to conquer the world. He’s a fearless character and in the photo looks a bit like the cat that ate the canary. I can recognize his intense energy and entrepreneurial spirit. What’s not appearant is the devotion he has to my mother.
They are a handsome young couple. Life is in front of them and their faces reflect the optimism they feel for the future. My father with his street smarts, inquisitiveness and drive is capable of doing a lot. In this photo I see them enjoying the moment and very confindent about what’s to come. In reality neither of them had any idea what was ahead.
Here’s the abridged version of what transpired: They start a family and have 3 children all of whom eventually go in their own direction but not necessarily the direction my parents hoped for. Dad even disowns one of them (me). My mother discovers she has polycystic kidneys. Both her kidneys fail and she spends the next 17 years on dialysis. In the process she loses the use of an arm through medical complications.
My father becomes mom’s devoted caregiver rearranging the way he manages his business, their social life and everything else so he could focus on providing her support. True to his warrior nature he fights with doctors, nurses and insurance companies at every turn whenever he smelled something wrong or unfair. His entire life revolved around my mother and I never heard even one complaint, except about our (the kids) availability to help our mother more often.
After my mom’s death he went through severe grieving. It changed him. He lived so simply it would have shamed a monk. Several years after mom’s passing he died due to a weak heart. I have no doubt the intense grief he went through contributed to that. What’s worse is that he left this world feeling he was a failure. As I said, “a novel in a snapshot”.
There were a couple of articles in the New York Times Magazine last weekend that got me thinking about this photo. One was in the Ethicist column and the other was a feature article. The person writing to the Ethicist found out through a neurologist that his/her mother had Alzheimer’s. Getting Alzheimer’s was the mother’s greatest fear so the doctor recommended that the family not tell her. The Ethicist considered this wrong advice. He counseled that although it would be the news she most feared it would be unfair not to tell her. He wrote, “You would want her to have the opportunity to initiate final, meaningful conversations with the people she values the most.” I couldn’t agree more.
The feature article was about a family having to deal with a husband/father with a serious bi-polar condition. It was a heart wrenching story of trying to get him committed to protect themselves and him. They had to go through intense emotional strains and the maddening health care/legal procedures that exist around mental health issues in the State of New York. The article shined a thousand gigawat spotlight on the complications involved in this kind of caregiving. It’s also a side of caregiving that probably doesn’t get much coverage.
These articles got me thinking about how clueless we are about what’s coming our way. I thought of my parents. I thought of myself and the people in these articles. Let’s face it, the odds are high that a caregiving situation may be just around the corner for any one of us. If the caregiving is not for someone else then it will be for us; it’s only a matter of time. With such a high degree of certainty you would think we’d received at least a little training and some preparation for it. Yet, I can’t think of a single class, program or even public service announcement that ever attempted to get me thinking about the possibility and what it entailed.
When I first met K, I didn’t see caregiving as part of our future. In the years that passed I still didn’t see it, nor even consider it. K did though. Several times she brought up her fear of having to become my caregiver. The thought was daunting to her, but it made no impression on me. We know these things are coming yet something within us keeps saying we have time. Do we really? Rowing a boat across the rough rivers of caregiving is hard enough, but having to build it and row at the same time is overwhelming. It may even destroy the rower.
Thankfully I’m discovering there’s a lot of help out there and many excellent resources to get educated. You can always begin by contacting a local hospice to see if they have a program designed to educate new caregivers. I’ll bet most of them will.
Here are several helpful sites to get some foundational information on caregiving, discover resources near you or to expand your current knowledge:
Family Caregiver Alliance/ The National Center on Caregiving: this site has tons of stuff related to policy, legislation, state-wide resources, the latest hot topics in caregiving, news, fact sheets, publications and so much more. Although the site is in part geared towards California the National Center on Caregiving, which is also part of the site, provides state by state coverage through their Family Care Navigator, other links to national information including federally funded caregiving programs and resources in your state. It’s an awesome site.
There are plenty of books out there on caregiving. Caregiver.com has a book club section with small write ups on some interesting books. Empowering Caregivers has a long list of recommended books. And finally be sure to go through the resource list on this site where you will find many more informational sources that will recommend even more books.
It’s also helpful to read about the experiences of people in the midst of caregiving. Check out sites like Middlescapes where Beth is sharing with us her experience as she takes care of her aged mom. To read first hand experiences like Beth’s or like Frangiapani Singaporenicum, another blog site written by someone caring for her mother afflicted with Alzheimer’s, is invaluable. These are wonderful writers who offer a lot to their readers.
If you have some valuable resources that you like to refer to I’d love to know them and I’m sure others reading this would appreciate your comments as well.