I’m trying to direct the care for Mom and Dad in a way that I would want to be cared for. When I started several years ago, that has meant finding doctors, rejecting others (like the cardiologist who insisted on more Coumadin even after Dad almost bled to death twice because of that blood thinner or the one who didn’t do the right thing for Mom when she had her rectal issue), doing web research, trying to understand what is really effective versus the short messages that people give you.
Sometimes this has meant rejecting medical advice (the Coumadin; leaving hospitals early; rejecting surgery to Dad’s scalp for a very slow-growing skin cancer).
Sometimes this has meant seeking out other opinions (adding the kyphoplasty for Mom’s back).
Along the way, we have seen Dad get infected in the hospital requiring readmission, the hospital being very slow about getting test results in our stroke scare of last year (when minutes could have made a big difference), the hospital taking four hours to bring Lasix from their own basement while Dad was struggling against fluid in his lungs, and the hospital wanting to put Dad in the same room as someone with pneumonia.
We have also seen hospitals perform very well.
The bottom line is that I am wary of doctors, hospitals, and treatments, while appreciating what they do.
We’ve gone through some scary and, for our parents, physically excruciatingly painful times and come out again.
All of this has led me to the following philosophy:
1. Ensure Mom and Dad are as comfortable as possible, at home as much as possible, and that their medical care is holistic.
So for example, I have added in co-q10 as a protection against the most severe side effects of Lipitor. We eliminated aspirin when Dad had a liver problem. Each doctor will prevent Dad from dying of the disease that happens to be that doctor’s specialty. The holistic aspect is the role I coordinate with their general practitioners in the ground floor of their building.
2. Get everyone to pull together in the same direction.
That means the caretakers and we siblings. Mom is particularly vulnerable and must be encouraged at every possible moment.
Right now, the more involved she can be in talking to Dad and holding his hand the better for everyone involved. Her contributions should be celebrated both because they are real and because she needs a goal.
3. We can all take pride in the fact that they have made it this far. Every day is a gift.
That said, it will happen that while I am their health care agent, both of our parents will get sick again, perhaps recover, but eventually die. The proximate cause may be because of a decision I make or a decision I fail to make. I make no pretensions to infallibility and I am often operating under conditions of uncertainty.
4. What I ask from you is to encourage Mom, Dad, and the caretakers. Calmly.
The only corrections should be in an encouraging tone, too—e.g. argue against defeatism and dispel guilt.
5. Arguments with me are always allowed.