On not sweating the small stuff (warning! yoga mention!)

How many times have you heard it said, "When I was faced with [insert crisis here], I finally realized what was important in life?"  Or, "Dealing with [catastrophe] really made me get my priorities in order."

My neighbor, who had a heart attack in his '50s, is a perpetually serene fellow because of it.  Ask him how he's doing, and he'll say, "I'm great.  I'm always great.  I'm alive!" He's right.  But I'm not channeling that essential truth at all. I do realize my priorities - my family, my friends, their health, my health - but nevertheless am still freaking out continually over extremely minor issues.  I.E.: Being absolutely sure I don't forget to buy a teeny little travel bottle of olive oil for our upcoming trip. Raging at my children for leaving clothing piled in their room. Seething inwardly (or outwardly) at bad drivers.  Wasting time on Facebook. Crying for no reason. Etcetera, etcetera, etcetera.

I think that having been pushed to the brink actually makes it much harder to achieve equilibrium. Over a decade ago my husband and I were struggling with infertility. The shock and pain of that, and the continual feeling of loss, scratched open a wound that I feel has never healed, even though I have two lively children now. I find that after that experience it's much easier for me to lose control more quickly, whether that's losing my temper utterly or being more fearful of life in general. Come to think of it, I'm not sure why elderly people are not all cranky, bitter and pissed off.  Think of all they've been through.

Perhaps the anxiety, rage and irritability are simply bad habits that need to be unlearned.  In theory, I know how to do this, just like I know how useless many of these emotions are (but important to accept them, oh, yes).  Doing it is quite another matter.  One reason I'm so interested in yoga is because I know that controlling our physiological aspects goes a long way toward keeping the mental in check.  Sound body, sound mind.  There are many studies documenting the effect breath regulation has on anxiety. But how often do you have to do it?  Is meditating once in the morning enough?  Or do I need to do diaphragmatic breathing all day long?

A long time ago I interviewed Dr. Herbert Benson, the pioneer of mind/study research.  Time to check out his classic, The Relaxation Response, for tips.  I'll report back.

I don't want your PSP!

One thing I rarely see caregivers post about -- correct me if I'm wrong -- is worrying about getting the disease themselves. I know that there seems to be very little risk of transmitting genetic mutations of dementia, Alzheimer's or PSP according to what we know so far. And caregivers are busy, and sometimes traumatized, and probably just too tired to think about it.

But I think about it. I think about the potential causes of my mom's PSP, particularly as it involves environmental contaminants, because I was exposed to the same probable culprit as she -- well water in a rural area, and near a metalworking plant to boot -- and at a younger age. (I'll get to the latest research on probable triggers in another post soon.)  In fact, I'm scared witless, and being near her heightens the fear. When something particularly horrid happens, like an incontinence episode or food gorging or a fall, I think, usually after I've helped rectify matters but sometimes while in the throes of it, "Oh, please, please, don't let this happen to me."

That half-scared, half repulsed feeling doesn't stop with the disease, though.  It has spilled over into other signs of aging that I share with my mom (and her mom). That nose-to-chin smile crease...the pooched stomach...the flabby thighs...the "bye-bye" arms that keep waving after you've stopped.  Maybe this is normal among women, and has nothing to do with the disease.  Maybe the disease has intensified these feelings for me.  I can't tell.

I feel deeply disloyal thinking this way, of course. Even though I can't recall thinking as a child that I wanted to be just like Mom, and as an adult, see many of her fallabilities -- it's just not right to so vehemently want to not be like her, particularly when she is such an outstanding person and giving, selfless mother.

On the other hand, I believe that we each have the power to determine much of our physical and mental health, and I spend a good deal of time each day exercising, shopping and preparing produce, reading vegan cookbooks (yet cooking the same old green vegetables, fried tofu and bean soup).  Last year we installed a reverse-osmosis water filtration system.  We eat organic whenever possible.  Hell, I don't even like to use non-organic shampoos. So to me, aging badly represents personal failure on some level.  Again, probably unfair to myself and my mother, but I'm sure this feeling can only be worked out after years of therapy, if at all.

Can I get rid of flabby thighs and arms? Probably, yes, with enough effort. Can I prevent PSP?  Again, if I haven't triggered any bad genes yet, I probably can.  Do I worry too much?  Probably, but isn't it warranted?

Helpful hints for PSP caregivers

As promised, I'm offering up some tips that may work for others who are caregiving, particularly for those with Parkinsonian disorders. It's what worked for Mom and me, anyway.

1.  When communicating, look your loved one in the eye.  It helped me to get Mom's attention and seemed to help her to vocalize responses.

2.  Little touches -- a pad here, a quick squeeze or kiss on the cheek -- seemed to cheer and enliven her. Research shows that physical contact can improve response and performance, as The New York Times reported recently.

3.  Giving her something to hold constructively helped with her "alien hand" -- her inability to uncurl her fingers.  I gave her a pencil to do Sudoku, a kid's ball to roll around, and am trying to find one of those "stress balls" filled with sand for her to squeeze.

4.  She loved being around my cats. She initiated conversation with them often, spontaneously, which she doesn't much do around humans these days. The cats responded by practically living on her lap.  Again, the warmth and contact were nice for her. Sunny, pictured above, pressed his advantage a little too much -- as soon as he saw her starting to sit down, he purred, leaped and snuggled, which made her laugh (or groan) each time.

5.  I wrote out numbered instructions for doing things like using our Keurig coffee machine.  Big block letters, short sentences. This helped with processing instructions, as did...

6.  Repetition.  Every time we got her dressed, I told her, "Butt on the bed."  I wanted her to get in the habit of preventing a fall right off the bat.  After the fiftieth time, she remembered -- well worth the effort!

7.  Amantadine, which she has just started, seemed to improve her balance quite a bit.

8.  Music.  Mom can remember every word to her favorite Oldies, and even shimmied around the kitchen a bit.  Music truly has amazing healing properties.  Must look into this a bit more.

The tour of duty ends

Mom is leaving today, and I am admittedly relieved on some levels.  My house can go back to its freakishly quiet and orderly self, without someone washing a pink robe with a hot load of whites, picking up kiddie beads one by one on the kitchen floor -- just when I need to make lunches or dinner in a hurry -- or descending the dark, steep stairs unattended at 4 a.m.

And yet, I will just need to worry afar now, instead of trying to control every little aspect right here at home.  I will have my illusion of freedom, enjoy a jog, a yoga class, a glass of wine -- but we're never truly free if we love, right?  This recalls our visit to Tibet last summer, for which I had pined more than a decade.  My daughter was terribly sick the entire time from altitude illness, and we had to leave early.  I was too frantic to really experience the magnitude of my location.  But then, what is a sharper emotion than fear for your child?

Anyway. I think I made some breakthroughs in terms of caring for someone with PSP, which I will share in another post. Plus, I'll miss my mom.  We had many sweet and surprisingly lucid moments, exactly as I had hoped, and who knows how much of a decline there will be before she visits again (with Dad), in May?  So, all in all, a bittersweet parting. I saw her sneakers standing empty by the wall and had to choke back tears.

But I'm proud of myself.  I did it!  One of most trying and important ventures of my life, second only to the first three months of raising twins.  (I've had job stints that were much harder to get through, but far less important.)  And I did it.  Thanks to you all, especially to my amazing, big-hearted friends.  We have gotten a definitive diagnosis, too, and the amantadine, which Mom started a few days ago, does have some effect in keeping her steady while walking or bending.  She even seems to be more responsive and lucid. That's good stuff.

Shattered

Bad day yesterday. Bad, bad day. Mom woke up at 4:30 am, as is her habit, but made her way downstairs before I could stop her and gently lead her back to bed for at least one more precious hour of sleep.

I had left last night's big mound of dirty dinner pots and dishes in the sink. Do other PSP folks have a cleaning/ordering compulsion? Because Mom does, and this pile, which included a few sharp knives, was an invitation to disaster. And loud, too - I have no carpets and kitchen dish clattering sounds twice as loud in the upstairs bedrooms, where my husband and kids still slept, unaware of the drama unfolding below.

I asked Mom once to come and sit down in the living room, drink her coffee. Twice. Three times. I tried my sometimes successful technique of stroking her upper arms, looking her straight in the eye, and asking her to sit down. Nothing. It was like trying to keep a starving dog from a raw chuck roast.

Gentle readers, I lost it. Yes, I yelled, and flung some silverware as well. "Mom, you have to stop - people are sleeping. Stop! Stop now!" Of course, I woke up H., and ended up having to lure Mom into the living room with a cookie. Then, I stayed up and washed the dishes.

I felt like crap. Still do. My only excuse is that I'm at my very worst at these super early hours, particularly before coffee, and if I have not had at least seven hours of solid sleep. I'm gradually getting used to the time shift, but not quickly enough. Otherwise, I have no excuse. I'm a shit, and need to get some anger management tactics to deal with this disease. Not so much for mom, but for others in my family -- I've yelled at my husband, too, and Dad. I can't do yoga every minute of every day, after all.

Then, Mom fell while putting on her pants. Hard, on the epoxy-over-cement floor of my renovated basement closet. Thankfully, she was o.k. I've been trying to get her to remember to bolster herself on the bed as she dresses, just repeating again and again, "Love to lean. You love to lean when you dress." I thought it was working, but..well.

To cap it off, I broke another bowl on my hard ceramic tiles while talking on the phone. Hundreds of tiny shards, and Mom was on them with her bare hands like a duck on a june bug before I could even hang up the phone. This time, I got her to stop with the direct gaze technique, and called the kids to sit with her in the living room for good measure.

By the way, I asked Mom's permission to write about her and her illness, and she granted it right away - "Of course." No questions asked, and when I explained why I felt the need for myself and for others to get this out there, she seemed to understand it completely. How marvelous is she?!

Growing by giving

So, my yoga teacher was saying some profound stuff today -- I still maintain yoga is the most cost effective therapy there is, as well as top notch for glutes tightening. So. She was talking about finding your destiny by living each moment, because change is the nature of being, and about how finding your strengths among these shifting conditions really brings you to another level.

She also said that one way to get the hell out of yourself (emphasis mine) is to give to another, and I have found that to be true. I don't know about you guys, but frankly I'm tired of hearing myself some days. Lots of days. I'm a pain in my own ass, pardon the profanity. But I am. At least with mom I'm doing something, helping someone, and not just echoing in my own stuffy chamber.

I help my kids, of course, and spend most of my waking hours doing so. But somehow with kids there is a bit of a selfish component -- the selfish gene -- promoting your own DNA and all that, plus they are adorable and amusing, being funky little developing beings. With Mom, it's just getting from moment to moment.

I think David Foster Wallace said it best; if you haven't read this commencement speech he gave once, please enrich your life hugely by doing so now. Anyway, per DFW, pictured below:

"The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day."

Payback

So, out of the blue Monday night, around 10 pm, Mom says, "I want to thank you for taking such good care of me."

Completely fluently. The old Mom. When I could manage to speak, I said something along the lines of, "How could I not? You took such good care of me when I was growing up; you helped me take care of my own kids." She replied, "I don't need repayment."

Wow.

Talking to the kids, part two

A number of family members have questioned how my kids are handling living with Mom. Background here -- when they were younger, they were as close to Nana as it was possible for grandkids to be. My mom was the first person other than myself and my partner to hold them; she lived with us for a month after they were born and drove 2 1/2 hours every week to help with them for a couple of days. To one of the girls in particular she was truly a soulmate; the two were overjoyed just to be in each other's presence.

Now she lives far, far away, and her illness has taken her even farther from their immediate attention. She doesn't join conversations or suggest games, and for two lively primary schoolers who don't stop chattering for a minute, maintaining a meaninful relationship has been difficult. They see she's sick; see me helping her totter up or down stairs; they see her emerging from her bedroom with her bra on over her shirt, or sans pants. They don't know, however, the extent of her illness, and I don't see any reason why they should.

Honestly, I don't know what to say to them, beyond what my dad and their godmother suggested - let them know that even though Nana can't really talk to them, or smile, or walk on over and give them a big hug, that's she's still Nana inside and loves them madly. I said this to the kids, which seemed to help, and every now and then I'll nudge one or other of the girls over to give her a hug or a kiss, which they do willingly and which seems to please everyone greatly afterward.

In fact, last night at the dinner table, Mom suddenly says, "I want..." I say, "What, Mom, what is it? More dumplings? Water?" She smiled and shook her head, and the kids joined in: To watch t.v.? A turtle? A new pair of shoes? Soon, we were all giggling; proving once again that humor conquers all.

Then I had an idea; I gave Mom a pen. "Here, Mom, just write it down." Shakily, she wrote: "To go to Toys-R-Us." The kids erupted into cheers.

Photo: Nana serves a birthday cake she made to an adoring audience. June, 2007

A rose by any other name

So, I changed a few things here to reflect the new diagnosis of supranuclear palsy, but having spent a good half hour trying to clean up many hundreds of glass chards (I broke the plate, not Mom), most of which was spent trying to keep Mom from either stepping in the mess or trying to pick up the tiny, tiny shards with her bare hands -- I think the dementia part of what we're dealing with here is still horribly alive and well.

Caregiving is going ok, but I think I'm shredding somewhat; that was my second broken plate this week. More to come. Right now have to get Mom out for a walk in the all-too-rare sunlight.