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.