And suddenly, a giant step back

This is a hard post to write.

I had been hiding my head in the sand for the past two weeks, enjoying my runs and yoga and designer coffee and experimental fake-meat products and reading Deepak Chopra (good stuff, don't snort...I'll share later). Blogging. Didn't call Mom once, for which I felt guilty, but not guilty enough to Go There. Just a wee mental vacation.

Yesterday, all hell breaks loose. Seems she has gotten worse - again! - with even more confusion in daily life, and losing control of her bowels, and somewhat less responsive, though the amantadine is still working wonders for her balance.  She can't play her new piano, though she does or did know how to read music. This thing is moving pretty quickly for PSP, I think.  I mean, we're only a year post-diagnosis, with symptoms only truly apparent a year before that...but as I said to her New Jersey specialist, the wonderful Dr. Golbe, I saw flashes of erratic behavior years ago.

Anyway, all this has just about broken Dad. He told me in no uncertain terms that he'd had it - he was looking at assisted living. Or driving off into the sunset on his motorcycle, never to be seen again. Understandable, of course - but impossible. It's way too early for Mom to be there. But what to do?  I can't bring her here to live with me, even with constant help. I can't do that to my husband and kids, much as I love Mom and Dad.

We did quickly decide that when Mom is ready for assisted living, we would bring her up near me. I can go visit daily if she's close, or as often as possible if she's reachable, while the very thought of going into a nursing home gives Dad heart palpitations; he has a deep fear of medicine and doctors, let alone that. Assisted living might be better, but who knows.  Dad actually shows symptoms of a heart attack when he's at the doctor's. Which gives you an idea of how valiant he is to have gone this far.

So I called a few places nearby and booked tours, though things around here are frightfully expensive. You know, it could work out well. Mom has her own little place with meals prepared for her, maybe a nice roommate, and can spend tons of time here at home with me, too. However, I think she would be heartbroken at leaving Dad. They've been married for 45 years. 

Right now, I'm looking around for adult day care for two days a week, and hopefully convinced Dad to have the nurse's aid come in three days a week, for a full five days of help. This will have to do.

As for me, I drank three glasses of wine and ate five bowls of corn chips, and woke up sneezy and bloated and full of self-reproach. I think I would rather indulge myself in fancy self-improvement techniques than drown in wine and reality t.v., my former diversions of last resort. It's harder, yet better for me, and more all-consuming and comforting, like learning banjo has been for Dad. But I can't turn my back on my parents any more, not even for a little bit.

Music hath power

We're undergoing a bit of a Renaissance in two households that has been helping us in wondrous ways. First of all, completely out of the blue, Dad announced he was going to learn to play the banjo.

Now, I'd never heard him mention this before,and have no idea how long he was cogitating on this idea.  But I was thrilled to hear it.  Talk about stimulating the senior brain and getting a little fun into your life - what's better than learning an instrument? And the banjo, at that!

When he noticed that Mom enjoyed hearing him pick through tunes, Dad asked her if she'd like to learn to play piano. She'd had a few years of lessons as a kid and even last year could still play a little. She happily agreed, so he rushed out and bought her a small 60-key piano for beginners. She's able to play on it some, but needs  beginner books with notated chords as yet.  There's no doubt that music is attractive to her; I noted when she was here last time that she enjoyed listening to our radios, be it kitchen and car, and could sing perfectly clearly to the Oldies, remembering every word, and even dance on occasion.

I did a bit of research, and discovered via the Institute for Music and Neurologic Function (who knew there was such a thing?!) that music therapy is indeed helpful for those with Parkinson's, stimulating neurotransmitters that are harmed by the disease. Here is the lovely Oliver Sacks explaining more about why music helps those with Parkinsonian diseases.

On our home front, we painfully coughed up some cash last month to buy a badly needed new piano. We purchased the piece (a study Yamaha P22, pictured here) mainly for our daughter, who looks to be a serious piano student (so far), but also for myself.  I studied classical music for nearly a decade and voice for two years; while only achieving a moderate degree of proficiency in each, nothing was quite so mesmerizing as my antique upright piano.  I spent a good hour each day practicing.

Once I started tooling around on this new piano, I realized how much I'd missed playing, however badly; how essential music is to my well-being - producing it as well as listening to it.  If I'm feeling fretful, I head over to the keyboard, and the act of playing is thankfully absorbing and often joyful. Singing is next for me.  That forces deep breathing as well as opening physically and emotionally.  I'm not quite ready, but I'm working on it.  I'd like to join a local choral group, but lack the guts to try out at present.

I'm not sure if music is universally therapeutic , but I definitely think it's worth a try, for both PSP patients and their caregivers.

The circle of all forms of life

Around this time of year, I miss my grandmother intensely.  She's been gone for many years, but was a firm Catholic (her father helped found a Slovak church), and the reason I was raised Catholic.  So Easter was a big deal:  a new dress, long masses, big family dinner with ham, keilbasa, red beets and horseradish, and sweet raisin bread.

Well, I no longer eat meat, so the big heritage dinner is out (our family went to P.F. Chang's).  I bought a new sundress, but just for looking decent while slogging around, and as a atheist, I don't attend mass. But what I do have is my grandmother's orchid, which blooms every year in spring.  My mother transplanted it from Grandmother's garden to mine.

I was reminded recently in a yoga book by Stephen Cope about how metaphysically, we really are One -- the atoms in our bodies change so quickly that there's a chance that I could, say, have part of Buddha or Abe Lincoln or Ella Fitzgerald in me, or even Hitler or Sarah Palin.

Thinking this way is helping me deal with my rage about my mom, my own faults, and that of everyone else.  Life changes, we change.  Everything is on its way somewhere. We're all connected.