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INTERMITTENT NOTESXML

A Rough Patch

FlareSorry to disappoint by not putting enough time into EP. It's been difficult, recently, and having a respiratory illness has just about been catastrophic.

So some weeks ago I got sick. I wasn't taking enough time for myself — more below — and when I got sick I didn't slow down. Eventually, the week before last, Sharon took three days off work to help with shopping, errands, cooking, etc., etc. That was a huge help, but then she got sick with the same thing. And I haven't been able to take care of her.

Meanwhile, my dad, 90, for whom I run a lot of errands, also got sick. Two Saturdays ago I wanted him to go to the hospital but, no, he wanted his doctor to decide what to do. Last Monday he got a prescription for antibiotics from his doctor's office, by phone, but without talking directly to the doctor. My dad's lungs were wheezing away and he sounded really bad but still he didn't want to go to the hospital. By Wednesday morning he'd changed his mind, on account of not being able to breath. Once at the hospital they diagnosed him with an especially savage case of pneumonia, life-threatening. I think at this point he's probably out of the woods but I kick myself for not insisting he go to the hospital when I first thought he should. My excuse is I was sick and not thinking clearly.

I'm still hacking up gobs of phlegm and I feel like crap. But I think I'm on the mend. My main fear is a relapse, so I have to try to take it easy, but that's more difficult than it sounds.

The fact is, I've been dealing with a continuing medical emergency since shortly after I went on vacation last November. Some of you may remember that two years ago, on Thanksgiving Day, my dad had a heart attack. Long story short, he's still got his wits and we're continuing to work on his physical therapy. Whereas his insurance provided physical therapist solemnly told us "he will never walk again," he can, now, with the help of a walker totter across his room and down a hallway. It may not sound like much but, believe me, this represents a huge amount of effort and is a great accomplishment. Anyhow, just before taking my latest vacation I went to my dad and asked him, "Please, dad, whatever you do don't get sick while I'm taking time off — I really need the rest." I don't think he saw the humor in that but he promised to try not to have a medical emergency.

Little did I know, I'd gone to the wrong parent. My mom, 92, has dementia and also has multiple sclerosis. They have a live-in helper and also weekend help, so they're both covered essentially 24/7. But the Saturday before Thanksgiving the caregiver couldn't stop my mom from half slipping out of bed, seriously hurting herself. My dad went in to see her but didn't think it was that bad. I didn't find out about it until Monday morning and when I saw her I realized it was indeed serious and I immediately sent her to the hospital. Turns out she'd broken her hip and several other bones. But, her bones are so brittle they can't be fixed. While in the hospital someone from home hospice services, which is a Medicare service, came to see me. Once I learned what they can do I signed her up. Believe me, home hospice is a Godsend! I guess the trade-off from a policy point of view is that to the end of life the patient doesn't go to the hospital for emergency measures in case of stroke, heart attack, cancer, whatever. Instead, they get care in home from a palliative perspective. Interestingly, once signed up there's no fixed duration for remaining in the program — it continues for however long the person may live. I'm sure, nevertheless, that weighed against end of life hospital stays home hospice is cost effective.

Home hospice provides my mom a daily visit by a home health assistant (who helps their private caregiver) plus two visits a week by a nurse. Also assorted others, social worker, chaplain, etc. Since Thanksgiving I've been greatly occupied by scheduling and managing the crew.

Hospice also provides all medicine and supplies. Which is great. Especially the pain meds, a pain patch plus liquid morphine, the latter as needed.

The nurse says my mom has about a month to go before she passes away. The nurse, who's outstanding, has lots of experience with this sort of thing, while I have none, but I know that my mom, despite her not being aware of what's going on, is a pretty tough lady. It wouldn't surprise me if she hangs on for several months more but I doubt she'll be here next year.

She still recognizes me but she isn't able to have much of a conversation. Her short term memory is almost completely shot. She tends to yell a lot for her mother, who passed away over fifty years ago. And she talks to imaginary people, sometimes several at once. Oh well.

I try to remember her as she used to be. She'd escaped rural life on the farm. She'd earned two Master's degrees. She'd worked in military intelligence at the Tokyo War Crimes Trials. And then my dad had pulled some strings and gotten her assigned to Trieste, where he was stationed, and they got married. Life after that in the foreign service.

I sit with her and tell her I love her and try to assure her that she's being cared for. To be honest, I hope she passes away sooner rather than later because her condition is really not something anyone would want for themselves. But she'll go when she goes, and that's OK.

I was worried this week that I might lose both my parents at once — a horrible thought — but now I'm feeling optimistic that my dad at least can keep chugging along for a few more years. The other thing I think about is, they've got me to look after them but I don't have any kids. When I get to be that age, if I should live so long, I'll be helpless... A kind of sobering realization...

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Comments


I'm sorry to hear about this, George.
I just listened to the episode about the Affordable Care Act and your comments about revolution are spot on.

Life presents these problems. They're unavoidable. But on top of it, for you to get sick yourself and not have access to care so that you can then care for your parents is obscene.

I'm 32. About ten years ago I went through direct care for my dying grandfather, dressing and undressing him, helping him to the bathroom etc. Our family had assistance from Medicare etc and even then it was incredibly difficult and painful.

The fact that we have major politicians regularly calling for cutting Medicare and denying people basic health care needs is madness. The entire system is completely insane. How this is not constantly discussed and acted on is beyond me.

The vast majority of adults I am around each day - despite facing similar troubles - are totally oblivious to the root problems of this system. No questioning of fundamentals occurs. Period. It's a lethal combination of brainwashing, denial, delusion and powerlessness.

Again, your comments about revolution, about reforming the political system completely, are right on. If this country, with its wealth, power and abilities refuses to use those resources for the wellbeing of all - if it instead makes a virtue of denying dignity to its population - what is the point of civilization? Why come together as human groups at all?

Anyway, happy sunday morning!

[Thanks very much, Chris, for commenting! g.]

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