On being a caregiver

It's been 2 weeks since our son Phil died, and I may write more of my reflections (and advice to others) at my blog when they come to me. Let me first say it is a privilege to be with a loved one when he is dying, although it will be the most difficult thing you'll ever do. Phil was Phil from the beginning to the end, and although that could be very frustrating when we wanted him to go a different direction or not cause self-harm, he was also a testament to God's creative power. From the moment of our conception to the moment of our last breath, we are the same person going through stages. Jesus has ennobled our frail human bodies that get sick and die, and from here on Phil has no bounds.

When we got the call from hospice in February we were totally unprepared--we thought Phil would be continuing his chemo and battling his brain tumor. It was an ugly fight, but he was determined to stick with the treatment. The appointments were on the calendar. But with hospice, treatment stops and palliative care begins. Our weekly visit and daily phone calls turned into 24/7 care. Because of HIPAA and Phil's personality, we knew little about his treatment or glioblastoma, only what we'd been able to learn on our own. We didn't live in the same community and knew nothing about his financial situation. The national situation almost eliminated our familiar support network. And we were so wrong about so many things.

Imagine (if you are about my age) you know how to drive a car--you've been driving so long it's almost second nature. But it's becoming difficult and you no longer do the free ways and stay with the streets you know. You vaguely remember how to drive a stick shift because you learned that as a teen (or in my case, your husband has one). So, these two nice ladies you've never seen before pay you a visit, show you a 1950s era pick up truck, put you behind the wheel, and say, "Don't worry, we'll teach you what you need to know." Meanwhile you're headed for the entrance ramp to drive through the center of Atlanta at rush hour, or Chicago through 50 construction zones at night. In a pick up truck you don't remember how to drive. At every stop light, a different person climbs in the cab and reroutes you--no map, no GPS. Sometimes at night something breaks down and it takes hours to get help. Fortunately, there are some hitch hikers to pick up along the way who really do help and explain things.

If you've been or will be a caregiver, your mileage will vary; spouses have rights and relationships with the medical system, financial institutions and social networks that parents and adult children don't have. The same people who are there to help may also say, by law we can't advise you, or that's not my area of expertise.

If you are healthy now and have no worries, pause and reflect. Two days before Phil was diagnosed we'd had a birthday lunch at the Chef-o-Nette in our old neighborhood and we knew nothing about what would be coming on October 1.

Reflections on health and the economy

This winter/spring in treatment for shingles (face and eye) I've had a lot of medical appointments. Some days it was my only time out of the house. Today I sat in the parking lot to read because I was a little early, and I counted the health related buildings around my ophthalmologist's location. Ten. I'm not sure I'd ever been in that area of our suburb before 2 months ago, and we've lived here 50 years.  The buildings all appeared to be 10-20 years old--health is a booming business.  I was reading Atul Gawande's "Being Mortal." Buy it for your children.  You need to know about illness, hospitals, hospice and death, and how much it costs.

The evening before surgery the father and daughter talked. She was a palliative care specialist, but it's hard to talk to your own parent and she realized they'd never had that "what if" conversation. It's like the "where babies come from" talk with your kids, only more complicated.  His neurosurgeon told him if they didn't remove the mass he had a 100% chance of being a quadriplegic; if they did remove it, a 20% chance. What makes being alive tolerable, the daughter asked. "If I'm able to eat chocolate ice cream and watch football on TV then I'm willing to stay alive," was the shocking answer of this professor emeritus. She had no idea he even watched football. For the rest of the story, p. 184-185.

Dr. Gawande's book was published in 2014. He reported changes in health care and said 1/2 to 2/3 of the global population would be middle class by 2030 and they would be facing (or already are) many of the same problems as the West. So I checked that (he gave no citation). I was surprised to see in a Brookings Report that figure had already been surpassed by 2016. Max Roser reports in 1820 the share of the global population living in poverty was 94 percent while 84 percent lived in "extreme" poverty. By 1992, the poverty rate had dropped to 51 percent, while the "extreme" poverty rate had dropped to 24 percent. Using a different measure of international poverty, the rate has dropped from 53 percent in 1981 to 17 percent in 2011 – representing the most rapid reduction in poverty in world history. 

Why? Capitalism. And that's why the black clad antifa and anti-American rioters who are burning buildings and harassing police are so scared. Without poverty or the threat of it for leverage they have no power. If children are educated and learn the truth about socialist economies, the anarchists lose their hold on them. They must destroy and lie.

 https://www.brookings.edu/wp-content/uploads/2017/02/global_20170228_global-middle-class.pdf

 http://www.washingtonexaminer.com/amazing-chart-shows-thanks-to-capitalism-global-poverty-is-at-its-lowest-rate-in-history/article/2562224

Palliative is now pro-active

Don't miss this very disturbing article at Junk Food Science about end-of-life care, palliative care, government health insurance, and new legislation in California which requires caregivers to encourage patients to end their lives when a cure isn't possible.

"As similar distortion of the meaning of palliative care was also seen in a very troubling editorial that appeared in the August issue of the American Journal of Nursing, suggesting that nurses can and should help terminally ill patients hasten their dying. It was authored by Judith Schwarz, Ph.D., RN, who is the clinical coordinator for the northeast branch of the assisted suicide advocacy group, the Hemlock Society, now calling itself Compassion & Choices in the Northeast. She is also the contributing editor for ethical issues for the American Journal of Nursing. Her editorial was republished online by the Nursing Center."

Like abortion, the wording of the California bill is couched in "choice" terms. "Compassion & Choices" is the new, improved and laundered name of the Hemlock Society, the pro-suicide group, and it was the sponsor of the California bill. It's a long article, I can't summarize, so go there and read it. Judith Schwarz, whose opinion piece is in the AJN is having a workshop on 9/11 in NYC. How tacky is that? In her photo she looks like an older Nurse Ratched.