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.