Family love - and abandonment

Mom opens a gift of new clothing.

Two weekends ago I went to Pennsylvania to meet Mom's plane and help get her settled. She had traveled up from Florida to her new AL home in the small town where she and Dad lived for 30 years and not far from her birthplace. (We hired her friend, a nurse, to bring her, for those of you interested in the caregiving logistics.)

Seeing her in all the old places was momentous. She didn't look out the window much, despite me pointing and yelling. "Look, Mom, the bonsai farm!  Jake's Flea Market! Country Meats!"  She did agree the fall foliage was lovely.

What was even more dear was the birthday party we had for her on the second day at the new AL. My cousins and Aunt J. came. I hadn't seen some of them for years -- I haven't lived in the area for eons -- and neither had Mom. We had lunch and cake in a private dining room.

No matter that I hadn't seen my family nor really spoken with them in years. They showed up. They cried with me, and offered help. They have visited Mom several times since, as I struggle to keep Dad alive here in New Jersey.  Dad's brother, with whom Dad had also lost contact for a number of years, now calls every day, and has driven hours to visit on many a bleak day.

That's what family means. My mom's sister, Aunt C., who didn't go to see her once at the home in Florida, though she lives a mere two hours away? Who didn't lift a finger to help her or my dad during the year and a half he took care of Mom at home? Is that family? I'm still struggling with that one. This same sister also ditched my grandmother, leaving her completely in Mom's care during the agonizing, disease-ridden last three years of Grandmother's life. Mom was never the same after.  It was that grueling.

I know it's not very yogic of me, but I don't think I can bring myself to ever gaze upon Aunt C. again. Though we could also be accused of ignoring my cousins and uncle, I suppose. But in a clutch, I like to think I would have stepped up.

Anyway, in the middle of the party, during a lull in the jokes and laughter, Mom looks up and addresses my aunt.  Keep in mind she rarely initiates a comment anymore and is semi-responsive when you address her. Anyway, she says, loud and clear, "It's good to see you again, J."

Pass the tissues!

Need AL help? Ask your ombudsman

I'm not sure if I mentioned this, but because Dad will be living with us until he gets his liver transplant -- more on this later, much more -- we have decided to move Mom up to a facility closer to us, namely in Pennsylvania.  Two reasons for this:  Her cousins and other family members can help us out by visiting regularly and helping shuttle needed items to her, and it's much cheaper.

I want to talk more about how important it was that I finally admitted I needed help and reached out to extended family, and how helpful they have been.  But what I want to get out now is a vitally important thing I learned recently.  There are people out there who can help you choose a top-rate assisted living facility, and will help you and your family make sure the AL experience is as positive as possible.

That person is your federally-mandated, free ombudsman.  Need to find out if any complaints have been registered against your chosen facility?  Contact your local ombudsman (let's call them oms for short).  Want to know your loved one's rights in the AL system?  Ditto.  What if you have questions about what is covered under Medicare or Medicaid?  Yep, your oms.

A dear friend's mom is a retired ombudsman, and promptly called the current local oms to check out the facility we've chosen for Mom. The current oms promised to check up on Mom shortly after admittance, seeing as I still live some 180 miles away, and also to meet us when we first arrived, just for so.  How great is that?

Click here for the National Long-Term Care Ombudsman Resource Center to find the oms nearest your facility.

The sickly underworld

There are two kinds of people: The healthy and the sick.

When you're well, you go about your business, worrying about things like buying a monthly rail pass and what color to dye your hair.  When you are sick -- and I include caregivers among the sick -- everything else takes a backseat. You're going through the motions, but the stuff that seemed so critical before, falls behind.  Hey, you might not even have time to get to most of it.

Life goals that seemed so ordinary before suddenly seem insurmountable. How do you get 20 minutes of exercise per day using a walker? Car ride longer than a 1/2 hour? I'd best bring incontinence supplies. The longer term projects?  Forget it. How does one travel to the Great Wall when one needs a regular phlebotomy? 

When people ask you, "How're you doing?" you want to laugh.  How can they be so damn cheerful? Such ignorant bliss, to be healthy! And when someone is nasty to you, like the lady who took the trouble to pull up and scream at me for blocking her for oh, thirty seconds in the school drop-off line, you're aghast. Doesn't she know?  (I found out later her son has autism and is generally very, very angry at the world, so I immediately forgave her. I did make a mental note to mention to her someday, should opportunity arise, that she had unwittingly let rip on another caregiver. If anybody needs to stick together, we do.)

Life becomes a series of doctor's appointments and worry, worry, worry. I'm not the only one who has slipped through the perilously thin ice of good health to live, with shocked horror, in the underworld. I have a few friends who are having major health issues of their own. Boy, had we known this was coming, we would have had a lot more fun together way back when.

What's interesting is that even if you have lived among the sick, it's very easy to forget the entire episode and mingle once again with the well should circumstances change. It's like it never happened. You might even abuse your body or, if you're a caregiver, forget about the sick loved one for vast chunks of time. Oh, right, must call Mom at the home today. It's our mind's way of keeping us sane, I suppose.

I want my life back!

When is self-pity permissible? Before all this crap happened to my parents and, by extension, to me and my little family, I would have said never, or perhaps only very rarely. After all, what purpose does it serve?  Best to waddle forward than wallow, I say. If you find yourself in hell, keep moving. Somebody said that once.

Today, I'm applying for a waiver. Because I'm feeling very sorry for myself.  I want my life back.

Back in June, even though my dad had only been recently diagnosed with cirrhosis, I figured, plow on with your plans. I had no idea of what was in store, or any kind of progression time line for his illness, or Mom's for that matter. I only knew that I was about to turn 46, and that my career as a health journalist had come to a virtual standstill after Mom was diagnosed. I did work, after recovering from my initial trauma, but lacked initiative to seek out gigs and pitch big stories and just deal with the chaff that comes from being a freelance writer. Kindly editors assigned me, but it wasn't enough. At one point I seriously considered applying to my nearest Trader Joe's. They give benefits!

Instead, I figured now might be a good time to go back and get that degree I need to hone my skills - in this case, an M.Sc. in nutrition. School had to be easier than work, right? So I yawned, stretched, and got started. I applied, got accepted, registered, bought the $150 textbook, attended campus welcome things, met with my advisor. The coursework was enlightening and challenging. Gritty science stuff like chemistry, biology, anatomy, physiology -- my temporal lobe was in shock from a decade's worth of disuse. I read for hours, painstakingly memorizing cell forms and vocabulary words like hydrolosis and adenosine triphosphate.

A few hours ago I withdrew from my first class. We decided Friday that Dad would have his liver transplant in Florida, where the wait time is likely to be much, much shorter than here in the northeast. So short, in fact, that it could happen as early as November. He's declined so quickly that waiting for almost a year seems intolerable. That means I need to be free to go to Florida to help out - see him through the transplant, hire home help, or even place him in assisted living for a month or so while he recuperates.  I can take my kids out of school for a week or even two, but I myself cannot take two weeks off from this course, which is the basis rest of the degree.

I want my life back.

This isn't a primal roar, meant to echo to the remote corners of cyberspace. More like a tremulous whimper. There are worse things. I know that. Interestingly, I rarely have these kinds of thoughts while slaving away for my kids or even my husband. Perhaps because much of what I do for them is proactive and a matter of choice, rather than the result of two debilitating illnesses that just seem so damn unfair.

Teaching kids about loss, the hard way

I'm back.  I just escorted my dad back to his home in Florida, where, with the aid of helpful neighbors, a medical alert system, and his doctors, I hope he stays stable for at least a month, after which he'll head up here to begin evaluations for a liver transplant.  More about that later.

I'm dreading the first day of school drop-off, where parents mill around on the blacktop, catching up.  "How was your summer?  Did you go anywhere?"  What do I say?  "I went to Florida for the first half to care for my dying parents.  Then I brought one of 'em back with me for the second half, which he spent a) in the hospital b) in doctors' offices and c) complaining about my cooking. Summer was swell!"

It was a tough summer for the kids, too.  Not just the weeks spent in Florida, which, except for two days at the beach and as many pool visits as we could muster, were pretty bland.  We live in a neighborhood that's crawling with kids, and every summer day is an orgy of grimy play; they missed that greatly while in Florida.  Then there was the trauma: They saw me leave with their grandpa in an ambulance, after seeing him prone and bloodied on the bathroom floor. They waited in 11 doctor/hospital waiting rooms. They've seen me so upset I could barely breathe.

Perhaps worse, I've been distracted and irritable for months now. I didn't realize how bad it had gotten until these past few days when I actually had a moment to take stock.  The worst was when I lashed out at one of the girls, who was begging endlessly for some toy or other.

I said -- yelled -- basically, "I've just had to take your grandfather to the hospital, again. And see this grapefruit-sized bruise on my leg?  That's from lifting your grandmother's wheelchair out of the car trunk. Do you have any idea what I have been through?  Can you leave me alone for just one minute?"

Ugly. Yeah. I know. Yet please believe me when I say that I truly could not take one more minute of the whining and begging.  And my girls are tweens, not five years old; I know just from what they read that they have been exposed to death and cruelty and other ugly human conditions. Still, I went too far.  The look on the kid's face after my rant was pure guilt, and horror. Before the summer I was worried that they had become too selfish, and now I fear that they've seen far more than they should have to.

The hard talk

If any of you have a loved one with PSP, or any other degenerative disease, do have a look at Dr. Atul Gawande's "Letting Go" in the latest New Yorker.  It's a discussion of the value of knowing what folks want as they face almost certain death, and the value of palliative care during their last days, even if they elect to continue medical intervention.

Sadly, I had to have just such a talk last night. Not with my Mom, who isn't able at this point, and who in any case had thankfully made a living will long ago, when she was of sound mind. No, this time it was with my father, who has advanced cirrhosis thanks to iron overload in his organs. We don't really know the cause of it; he probably doesn't have hemochromatosis, a genetic disorder that causes the body to retain, rather than excrete, excess iron.  In any case, his liver is badly and irreparably damaged, with horrible side effects.  I'll spare you the gory -- and I literally mean gory -- details, except to throw in that a botched liver biopsy, in which one of his lungs was punctured and collapsed, greatly deteriorated his overall condition. Every time I hear a thump somewhere in the house, I listen or go check to make sure it's not him, on the floor again, vomiting blood.

Florida or bust.

He's living with me now until he regains some strength, and also to see a top hepatologist in New York, to see if he is a candidate for a liver transplant. What spurred our talk was me trying to ascertain, gently, how he wants to live the next few years. I can't uproot my family to Florida, where he lives, but I want him to live in his home if he can, as he plotted and saved and sweated for decades to buy his dream home there. Clearly, though, he can't live completely independently. So that means hiring a housekeeper/nurse to check in on him.  Keep in mind he's only 65 years old.  We still can't believe this is happening to him, to all of us.

How strange that only six months ago we were placing ads to find a nurse for Mom. She's doing well in assisted living -- not that I'm able to check on her regularly, as she's far, far away in Florida, too. What a mess. I know I'm not the only one in this situation.  It's the flip side of having our modern, peripatetic lives.  We get move to sunny climes or exotic cities at will, but I can also see the value of having an extended family all under one roof.

PSP vs. dementia

It's a battle to the finish, with Mom's PSP symptoms making a blast of a comeback.  But wait - dementia, which trailed for a few months, has suddenly made a leap ahead and looks like it will overtake the PSP once and for all.

Despite the wonderful advances due to the amantadine, mom is once more losing her balance and is very shaky sitting and standing; she has tremors while trying to eat again.  We knew that the good effects of amantadine might be only temporary, but we didn't even get the usual six months.

But it's the dementia that's taken over. The doctor who saw mom, the PSP guru in New Jersey, said that Mom did have a lot of frontal lobe symptoms for a PSP patient. Sadly, these seem seem to be coming to the foreground. She's increasingly forgetful and confused; I sent flowers to the AL (assisted living, for you newbies) home, and she asked the proprietor, wonderingly, "Who sent me flowers?"  She's unable to dress herself any more without prompting, nor to bathe.

As I'm the only person who has ever sent her flowers, I'm thinking she may not, in fact, have remembered at that moment that she had a family. My dad thinks that in a few months this will be so, and I told him I sure as hell hoped so.  I mean, she's happy, she's caring and well cared for, she enjoys food and game shows and walks and books and Swiffering, all the while forgetting that she's terminally ill and a prisoner in someone else's establishment - what more could we ask than that she forget?

A home for Mom

Mom will go into assisted living next Monday.

This has come much faster than we thought it would, for a number of reasons. First, she's declined quite a bit; while here two weeks ago, she fell three times in 10 days, each time getting up from the toilet. These falls were minor, except for the last, which left a brush burn and a bruise and a wound on my soul.  You think you're watching, but you get bored and go find a bed to make, and it happens that quickly.

She also seems far less aware of her surroundings, and is more confused; while at our traditional TJ Maxx outing, she picked out two of the same thing to try on, and insisted on stopping several times to button clothing on store displays.

But the most pressing reason is that Dad is sick. He has cirrhosis of the liver. Apparently he has a hereditary disorder that causes iron to build up in the body and destroy essential organs. We're not sure how much liver function he has left, but we spent much of Memorial Day weekend in the hospital dealing with side effects.  He's weak, depressed, and will need months of treatments.  It was hard enough for him to take care of both Mom and himself, and his new bachelor skills don't include cooking and eating well and endless doctor visits.  I hope he learns quickly.

One good note is that Mom is relatively resigned to the change, and likes the home, which is new, clean and has another patient her age, bizarrely enough. PSP is said to rob victims of their emotions, which is a blessing in this case. It's a small group home, which I hope will give her more freedom to roam, to help with cleaning, which she loves, and for the staff to learn her idiosyncrasies. I hope they do; I'm a three-hour plane ride away. We simply couldn't afford the kind of care she needs in my area.  (I toured many places and did research for a solid week; if anyone needs any kind of advice about assisted living, feel free to e-mail me, and I'll pass on what I've learned.)

There is a special kind of agony to being far away and hence fairly helpless, but I'll be spending most of my summer with the folks, patient kids trailing (who are fairly happy anyway if they can swim and read), helping Mom get settled and Dad get various tests and biopsies.  We're not moving; I won't do that to my kids.

My friend J. asked me how in the world I was coping sans medication. I simply don't know.  One foot in front of the other. Too many people depend on me for me to break down. I'm taking care of myself, too, because I do have the luxury of getting out for yoga or a run now that the folks are gone.  But I did ask J. to pray for me, and I don't believe in God.  I figure we can use help from any possible angle.

You haven't lived until...

Friends, you haven't lived until you've wiped your Mother's ass.

Yes, I'm being profane and reaching for dramatic effect to a point, but I also mean it. There are depths of great joy in one's life -- falling in love, the day your children are born, publishing your first article in the New York Times -- and depths of great sadness, and I'm in the latter.  And perhaps one needs to experience both to really live.  I thought, guiltily, about when Mom and Dad leave next week, if they are well enough to travel, that "Life can get back to normal."  But this is life. It's just my turn to get the whole Magilla.

I will post further when Mom and Dad have left, but right now am busy looking at nursing homes and taking Dad from one doctor to another.  His digestive problem has gotten far, far worse and we fear something serious.  When it rains...

Stops and starts

Well, I finished the 5k at a somewhat respectable pace (31:14).  I probably could have knuckled down and finished even a bit better, but was distracted waving and halloo-ing at all the townfolk I knew in the race and cheering along the course. And slowing by the three glasses of wine I'd had the night before, I should add.

But what a tremendous feeling of accomplishment. I mean, who would think...stubby, lazy me, most at home curled up with a book, in a road race. People, if I can do it, anyone can. I can't wait for the next one, and am considering upping my distance to try for a 10k in the fall. Running rocks for stress, too.

And boy, do we got that. Dad was in the ER again this weekend for very painful digestive issues, and a scan revealed scars on his kidney.  Now, he's never been a drinker, and hasn't got hepatitis that we know of, and his symptoms hardly match liver disease, so we're chalking that up to the "lets not get worked up about this yet" category.  First, he's got to keep food down/in.  Priorities, priorities.  Liver disease?  That can wait until another day.

Their visit next week to give him a break and to start looking at assisted living/dementia care may have to be postponed, which is hugely disappointing and scary, because I really need to get in there and help.  Being a thousand miles away is frustrating, to say the least. One lovely thing is that a dear friend who happened to be in the area stopped by to check in.  The resulting warm feelings will keep us going for days - I know it meant a lot to my parents, too.  One act of human kindness goes a long way.

Running away from it all

As this blog is also hopefully being read by other caregivers, I would be remiss if I didn't mention again how helpful exercise has been for me in coping with all of this. It's well-documented that exercise helps with stress, and I found a bunch of articles specifically talking about caregiving - this one sums it up nicely.

I don't know how much bliss I can attribute to yoga versus running, because I began both simultaneously, and I do each about two-three times each week.  They complement each other nicely. Running helps get out some of the brutish, excitable, trembly kind of stress, while yoga does help me slow down the helpless, rapid-fire thoughts.  Physically, both are great for better muscle tone; while the running is aerobic and helps heart rate, the kind of faster-pasted yoga I'm doing - vinyasa - is also demanding physically.

For each, there's a sense of achievement, and clear progress, and I feel much, much less tired each day now than I did six months ago. (I also gave up meat, and that may have something to do with overall wellbeing. I do feel lighter, particularly in the gut area, get sick less, and have clearer skin.)  I look at these activities as my sanity pill, almost literally, and I'm selfish about getting that hour each day to invest in this. Meanwhile, a bunch of sample packs of antidepressants are gathering dust, awaiting the time I'm really desperate -- or, who knows, if I keep this up, I may make it through using just my legs and yogic mind.

Meanwhile, I am running my first 5K Sunday, so wish me luck.

The wake-up call

Earlier this week I got some bad news from Dad: He had intense pain in his lower belly. He had a doctor's appointment for the following morning, but that left us plenty of time to wonder. Was it a kidney stone?  Pancreatic cancer? A hernia? Would it involve an E.R. visit in the middle of the night (like the first time he had stones), or an operation? And if so, who would care for Mom, and how quickly could we get this care?

After considering these immediate problems, the bleak larger picture became apparent. If Dad gets sick, what then?  We have no family members able (or, alas, willing) to assist him and Mom other than myself; my husband works out of state, and abandoning his job would mean that I would most likely have to go back to work, at least more than my current haphazard freelancing - counterproductive in every respect. I do have friends who could help out with my kids for a few days or weeks, but beyond that, we would be in uncharted territory.  The kids and I could move in with them, but not until school's out, and until then, we have statewide school testing, ballet recitals, birthday parties, concerts and similar Huge Events.

In the meantime, I was utterly helpless, with nothing to do but to prescribe Advil, which somehow he had forgotten existed, worry, and call other people and make them worried. 

Without getting into specifics, we think that Dad's o.k. for the moment, but may have some stress-related digestive problems. Which may not be life-threatening, but could make his daily life even more miserable. He has help with Mom five days a week now, so that may help. Why do families live so far apart these days?  How fragile the whole setup is.  One unlucky break can unravel many lives.

Photo: Florida Repertory Theater

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.

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.

A new diagnosis

The verdict is in - after seeing a specialist up here yesterday (after a three-month wait), it turns out that Mom most likely does have PSP (progressive supranuclear palsy), and not frontal lobe dementia. We were hoping for straight Parkinson's -- Can you believe anyone has ever hoped for Parkinson's? -- because the symptoms are much more treatable. I had hopes of an Awakenings-like miracle with her on levodopa. Suddenly, Mom again! Laughing, talkative, capable. There she'd be, serving the kids breakfast when I came downstairs. Instead, this morning she tried to make the bed with me still in it.

But PSP it is. It is still primarily a movement disorder, and big risks down the road are the inability to walk or to swallow. Still, Mom has a better chance of retaining more of her mental faculties than if she had FLD. So we'll take what comes.

It occurs to me that perhaps I should change the name of this blog.

Time in a bottle

Mom's been here for two full days so far, and one thing among many I've learned that jumps out at me: Time loses all meaning when you're caring for a dementia/Parkinson's patient. Wait, strike that -- it has greater meaning, because you seem to need so much more of it.

I'm one of those prepare-hours-before kinds of people, the woman who makes her kids' lunches the night before and is at the airport exactly two hours ahead. Given a deadline, I'll mentally put it at days before.

I've had to rethink my habits. Mom needs twice as much time and dozens of steps more to even get out the door, and you can't rush. A shirt simply has to be drawn slowly over her arms, one of which can't lift past 65 degrees, thanks to last year's bone-breaking fall; rush it, and she'll get tangled. If she eats too quickly and she'll choke, and she almost always eats too quickly, so one needs to force her to slow down, which requires parceling out tiny portions. Toileting requires at least ten minutes simply for her to fold five squares into a neat rectangular shape, and she will not -- will not -- use it bunched. Going down the stairs is a delicate balancing/strength move for both of us, and walking quickly is an invitation to disaster.

I'd like to think that all this extra time between actions gives me the chance to achieve a Zen-like perfection in each one. Wax on, wax off. Breathe. Regrettably, I'm not that enlightened, but I will say that magnifying each little chore we go through makes you appreciate just how much each of us do each day.

"It's just like having a baby!"

It's nine days until Mom comes to stay with me for a month -- three until I fly down to pick her up. Am I ready? Not in the slightest. Logistics-wise, I still haven't figured out where Mom will sleep. Downstairs in our chilly renovated basement (with me of course), far away from where my children sleep, upstairs? Husband is still working out of state during the week, so I see potential for midnight freakouts. Upstairs, where I will have to lock us in the bedroom to prevent nocturnal wanderings, and potentially a fall down the stairs? Yes, I considered a gate, but she's tall enough to fall right over it; her balance continues to grow worse, something we are hoping future meds might help as soon as she gets a firm diagnosis one way or the other.

It's a little like having another kid. I have even hired my ex-nanny, a capable and serene person, to help me out twice a week, or now and then when I need to take a break or buy groceries. I bought diapers. I hid bleaches and potential poisons and stashed throw rugs to prevent tripping. But I will need to rethink my schedule to accommodate Mom having to accompany us everywhere. My kids are at the age where they have a modicum of independence, so showers, errands and so forth are much easier; I've been spoiled.

Now, I'll have to regress and behave as if, say, I have a three-year-old again, plus two primary school kids. Lots of women do it, I encourage myself -- have three or even four kids that they manage not to kill, and even to feed and care for. Our town's librarian, with whom I am chummy, was telling me that people said to her about her 80-year-old dad, an Alzheimer's patient, "Now you know what it's like to have a baby!" (She has no children.)

We both had to hoot at that. Thing is, it's not like having a kid. Your kid will someday stop wetting itself, and will be able to verbalize its wants and needs, and stop having tantrums. Your parent won't. That element of temporary stress, of hope for the future, and unconditional love, keeps a mother going through the tough times. What's there for a daughter? Love, yes. And gratitude, and lots of duty.

Emotionally, I feel more secure about dealing. I'm getting better at realizing the best way to achieve goals is to, above all, remain calm, thanks in goodly part to yoga, and to just not giving a damn about most things anymore, which isn't making me a better person, but sure does help keep me sane. I'm not reading much news other than health; I forbade myself to think about trash and climate change and environmental toxins and taxes; I smile when someone cuts me off at school pickup. Surely this is the path to serenity.

The kindness of strangers

Shopping at Trader Joe's today, I noticed quite a few caregiving couples, comprised of a younger relative (or perhaps nurse) assisting a quivering elder with grocery shopping. My friend E. told me that, once his dad fell ill with Alzheimer's, he started noticing these types of couples more and more -- perhaps I'm getting there.

I was reminded of shopping with my mom over Christmas, for a gift for my cousin. Once Mom gets fixed on something she wants, there's no stopping her; this time, she reached up and over another woman to grab at a pair of slipper socks. Thankfully, the woman perused Mom's stoic, glazed expression, and caught my silently mouthed, "I'm sorry." Instead of getting pissed, she pulled me aside and said quietly, "My dad was like that. I know. God bless you."

I had to turn away before I crumpled entirely, but I managed to wring out a smile. Another time, some women waiting to use the lav at a state park let Mom and I go to the front of the line after they saw my desperate expression (and perhaps her sodden pants). People are nice sometimes. Sometimes they're idiots, yes; but Mom seems to bring out the best in them.

Living yoga

Just got out of another class and, as usual, the wellspring of ideas, good vibes, and sheer life force flows so thick and fast toward the end of the class that I find it hard to relax, let alone meditate, in corpse pose at the end of things. Here's how the runaway thought train goes: "What about taking some before-and-after photos for the blog? Ouch, could be unpretty...Where can I practice headstand at home and not kill myself...must write down what I did right in that balance, otherwise I"ll never be able to do it again...I feel so blissed out!" And so forth.

The upside to being distracted is that it shows I'm obviously thrilled by my re-discovery of yoga. I want to keep the momentum going, and am fairly dedicated to trying to learn about and live a more yogic lifestyle. I've always been an all-or-nothing sort of girl, and find I can only truly accomplish anything when I am totally committed to it. I suspect it's that way for a lot of us.

Therefore, I want to learn about the history of yoga, what the various Sanskrit terms for poses mean and their origin, how to train my mind, how to cook fresh, healthy vegan (instead of relying on endless packs of Tasty Bite Indian beans) and basically do whatever I have to do in daily life to improve in what I think is quite a demanding undertaking. I'm under no illusion that I can dedicate my entire life to becoming a yogi, as was the practice in yoga's beginnings. But I don't think that combining yoga classes with gourmet food, for example, or having a competition in it, is quite the thing. To this novice, yoga seems like more of a cerebral than gustatory exercise, more a stretching of the self than a performance.

Fear of falling, in yoga and life

One of the biggest fears I have for my upcoming solo caretaking stint is that Mom will fall again, breaking another arm, or worse. Dad can barely let her walk around, so great is his fear of this - and they don't even have a flight of stairs. I've got two, and need to figure out how I can get her safely down to her bedroom and shower, and make sure she doesn't go downstairs without me accompanying her. I fear she'll simply topple over a kids' gate. I wonder if a simple chest-high band or bar will be enough to remind her to ask me for help, if she wants to get down? Or will she simply try to go under it?

Meanwhile, I have the same kind of fears for myself, only they have to do with inversions in yoga class. I've always had a fear of being upside down, despite being able to turn a decent cartwheel. At the same time, those yogic handstands and forearm balances hold quite a bit of awe and fascination for me; they are the epitome of grace and fitness. Never mind that I am light years away from being able to do a basic headstand. (Confession: I've been subscribing to Yoga Journal for years without actually practicing yoga. I just liked looking at slim, beautiful people doing yoga. I call it 'yoga porn.')

In any case, at my most recent class, when I had managed to do this kind of upside-down egg headstand, with teacher Jennifer's help (am I supposed to call her 'yogi Jennifer?' Don't have the lingo down yet), she told the class afterward about her early upside-down fears, of cracking her wrist, or skull, or spine. Aha! I'm not the only one. Ergo, I must in theory be able to achieve a headstand, too, and conquer these fears of crashing and cracking. I learned that the headstand involves good balance on the crown of your head, plus adequate reliance on your arms, rather than on your neck muscles; you must also have enough strength in your core to get those plow-pushers -- I mean, legs -- up and over your head.

Three weeks until Mom comes. Can I conquer both fears before she gets here?

Breakthroughs

In future posts, I promise to put the word "yoga" in the headline, so if you're not into yoga you can just skip over the post. But today I just want to trumpet to the world how great I think the practice of yoga is, physically, mentally, the whole Megillah* - so please bear with me.

Anyway, here I am in the second week of Starting Yoga, Again, and For The Last Time. The initial pain from the muscles on either side of my torso, lower abdomen and shoulder has subsided, which is slightly disappointing as it gives me great pleasure to know that I've worked these hitherto unused body parts.

I'm sure I'll find new areas in which to ache, however, particularly as I am determined to do head/handstands. Someday. I suspect that is a long way away, as even a down dog held longer than five breaths sets my upper arms a-tremble like the last leaf in a November wind.

In any case, I've been trying these "flow" classes, which link various positions and poses. Attention to breathwork is paramount, otherwise the whole passage becomes a shoddy mess. Now that I've memorized some of the sequences, though, I'm finally getting it. And I also had a breakthrough in actually physically working through something I've realized for a long time: You can use your body to trick your mind into being at peace.

As a former health editor, I knew this. Exercise improves your mood. Meditation, or even very simple, easy, repetitive breathing, can lower your blood pressure. I've used Andrew Weil's 4-7-8 breath successfully many, many times to quell road rage. Even smiling can actually make you feel happier, even if you didn't feel like smiling in the first place.

But today is the first time I realized, as I moved semi-smoothly from pose to pose, drawing breath in...out...in...and out, that I can really get, out of yoga, one of my primary goals, which is to be a calmer, saner, more clear-headed person when I'm taking care of my mom and talking my dad back from the ledge.

*Do you know where the phrase "the whole Magillah" comes from? I didn't, and found very amusing and interesting trivia upon looking it up - check it out.

Lunch with Oprah

Had a dream last night in which my mom and I were having lunch with Oprah and her friend -- what's her name, Gayle? -- and I was telling Oprah, "You really need to do a segment on early-onset dementia. There are millions of sufferers! It's being called "the baby-boomer disease!"

I'm thinking that this dream was a very real reflection of my desires to a) call attention to the disease and the devastation it brings and b) therefore get folks to rise up against all the man-made risks of getting dementia or Parkinsonian movement disorders. Not that we know much about them yet -- eating meat? polluted water? pesticides? -- but there certainly should be more attention devoted to research. A little ribbon at least.

Aching to try yoga

I've started yoga (again) to try to get my body and mind under control before Mom comes to stay. I would love to have a regular practice for the rest of my life, actually; now that I'm middle-age and facing, shall we say, the end of the road rather than its beginning, it's time to get serious about making the precious time I've got healthy and sane.

So, jumping in with two feet, and trying to get at least one off the floor gracefully, and perhaps both, if I ever conquer my fear and weak upper arms to do a great headstand. The thing is, I'm surprised at how much I can do. I may be short and buxom, with what my Mom has always called our "plow-pushin' legs," inherited from our European peasant ancestors. But I'm flexible. I seem to have good balance. And when there is a small success, even remembering to breathe regularly -- I tend to hold my breath when I'm stressed -- I'm elated.

Then, I try to keep the good vibes flowing by curtaining my road rage, child nagging and political ranting for at least 24 hours. I've adopted some of the yogic lifestyle, too, by not eating meat. That has a selfish background, though; as you know, I've decided after researching that there is some link, with scope as yet undetermined, between eating a lot of meat and poultry and the risk of coming down with dementia. Also a selfish motivation: My muscles are hurting right now in places I'd forgotten existed on my body. Can toning be far behind? One hopes.

I'm also digging the spiritual aspect. I must admit, however, that upon letting out my first squeaky "oooooooommmmmm" I felt awkward; when teacher Kent last week did a wee bit of chanting, the hardened atheist inside my head let out an insolent giggle. I have no idea what he said in the chant, nor do I really want to know just yet; it was comforting, and I'll take it. And I am more than happy to bow to the light within, as teacher Jennifer suggests, at the end of class. The brighter the light, these days, the better.

Skills testing

One of the ideas I had while at my parents' was to try to test Mom on various skills, to see what she's still capable of handling. From what I've been reading, listlessness and depression can greatly worsen symptoms of, well, just about any disease, so if she can still be useful to herself and others, so much the better.

The results were mixed. Mom could help me hold a wooden doll's bed as I dissembled it, but was not able to pack it back into its box for mailing. She can put ingredients into and stir spaghetti sauce (even correcting my measurements), but can't open cans, and I caught her breaking down the fresh tomatoes with her fingers -- which may just be her technique, who knows. She can't find the words for "lemon" or "face cream" but can sing along to the oldies. She can empty a dishwasher, but not replace the dishes.

My dad is so afraid she'll fall again that he's loathe to let her do anything, but I'll definitely let her give most things a try here, under my supervision of course. My housekeeping, frankly, isn't much better.