Post Script

For those of you finding yourselves all of a sudden the caregiver for your parent, here is a recent USA Today article which has some links to resources that might help. I know for myself it wasn't something I was prepared for in any way. We think about the future, but this part of the future seems to be a blind spot. No one wants to think about it happening, and then all of a sudden, one evening, there you are. The tables have turned, and there is no turning them back. As the first article in the USA Today series says:

"Starting to take over for your parents can be one of the most distressing experiences of a lifetime."

Its not something anyone whats to think about, but its something that you need to know about because its a time you need support, and trust me, social workers, discharge planners, admissions directors, doctors, nurses, aides, hospice teams; they are all great, but not one of them will help you to navigate the choppy waters of long term care and its financing on a personal level. 

 

I think what happens to so many is that their kids can't deal, and the parent gets neglected. The staff at the nursing home were amazed and so happy that Dad had people to care for him. So many family members simply admit their loved one and tell the staff "call me when its over."  Understandable to a degree because the difficulty of being a caregiver for a parent is inconceivable. But our parents deserve more. So take a moment, and begin to think about it. Begin to prepare yourself. You may think you have time, but you may not. My dad had just turned 62.

I Want to be Empowered

A little over a year ago I saw a documentary on PBS that scared me to the core. It was all about MRSA, basically a super staph infection that is drug resistant. Yikes! The rates of MRSA were frightening, but even more concerning was what was being done to minimize MRSA and its impacts on patients, which, with the exception of the VA and the Pittsburgh hospital systems, is next to nothing.  And its not like the steps to be taken to control it are overwhelming. We are talking handwashing between patients, doing a test of incoming patients and isolating those who tested positive for the bug.  Both the VA and Pgh have had great luck by instituting these small steps in a real systematic way. Great for them, but I'm not a vet, and I don't live in Pittsburgh.  But I also wasn't planning on going into the hospital any time soon so I didn't loose any sleep over it.

Fast forward to today and the fear and sense of helplessness in me is growing.  I spent the last 6 weeks in hospitals and nursing homes, caring for my father who passed away last week. During that time he acquired a staph infection, which I think is what ultimately meant: time's up.  The day after he died, I came down with pneumonia. Bound to happen. 8-12 hours a day in a sick care institution, no pneumonia shot, lots of interactions with fluid from Dad.  Add to that the fact that in the next month or two I will become the patient myself as I go in for brain surgery.  Surgery that will leave my spinal chord fluid draining out of a shunt in my spine for 48 hours. Surgery on someone with not the best immune system to say the least. The good news is that I'm not on steroids or immunosuppresants anymore.

 

So my question is: what can I do to protect myself?  I have no control over what health care providers do or don't do. I could remind them every time they enter my room to use the hand sanitizer next to the door, which I'm sure they would just love, but outside my room, I can't know what their hygiene is like, and I certainly couldn't control it even if I did know.  So what can I do as a patient? I'm scared silly.

 

Maybe I wouldn't be so frightened if I wasn't in the midst of a bout of magical thinking brought on by current circumstances. Considering the past 2 months, its no surprise, a quick timeline: 1. I find out about having to have brain surgery 2. my dad goes into the hospital for congestive heart failure 3. my dad was denied care by the insurance company, forcing a fight, and hours upon hours spent dealing with bureaucracies (thank GOODNESS I do what I do for a living, but still it was unbelievable) 4. my father in law has a massive stroke 5. my dad's kidneys fail 6. my dad gets into a nursing home, then goes back to the hospital, then back to the nursing home, then back to the hospital, then into hospice 7. my dad dies 8. I get pneumonia 9. I go to clean out my dad's apartment and discover he was a compulsive hoarder (who knows what kind of bug I might have in my system after cleaning it out) So as you can see, things seem to be going really wrong, and what else but MRSA could fit into this timeline? I shouldn't even ask that question. But still, when you look at the statistics of a newly released report on the problem, I can't help but shudder.

 

If anyone knows of tips for a gal in my position, feel free. Please.

Disgusting

From today's Washington Post.

As the nation struggles to improve medical and mental health care for military personnel returning from Afghanistan and Iraq, about 1.8 million U.S. veterans under age 65 lack even basic health insurance or access to care at Veterans Affairs hospitals, a new study has found.

The ranks of uninsured veterans have increased by 290,000 since 2000, said Stephanie J. Woolhandler, the Harvard Medical School professor who presented her findings yesterday before the House Committee on Veterans Affairs.

"The data is showing that many veterans have no coverage and they're sick and need care and can't get it," Woolhandler said.

Rep. Bob Filner (D-Calif.), the committee's chairman, said taking care of veterans is a continuing cost of war. "All veterans should have access to 'their' health-care system," he said. "This is rationing health care to veterans, those who have served our nation. And I think it's unacceptable for a nation of our wealth and our ability."