The universe giveth

A very strange experience today:  I brought Dad to see Mom at today.  It was the first time they have seen each other since July, after being married - and not separated for more than a couple of days -- 46 years.

Here is Dad, getting better, with a new liver, and ready to go back to Florida in two weeks to stay for 10 days, or until he feels the need to join us in our new home.  And there is Mom: Steadily worse. Today she was able to open her eyes, which was glorious, as they widened with joy and surprise when she saw Dad. She was even able to smile a bit. Wonderful moment.

After that, she went rigid.  Unable to respond with even a syllable, and able to move her head just a little bit, her eyes following, slowly, for the rest of the hour Dad was able to bear being there.  She apparently has a hard time blinking as well.  When I gave her a magazine, I had to position her hands around it.  When I try to move her arm or leg, it causes terrible tremors.

We have taken her off the Amantadine, as she has been on it for more than a year now and its effects are considered to be temporary, so that may explain the eyes-open-but-now-unable-to-speak phenomenon.  However, I think she might be more comfortable this way, seeing what's going on around her.  What do you think?

Dad held up well, though the entire experience was a shock.  He's never good in these kinds of situations; is any man?  He was a depressed, disgruntled patient, too.  His blood pressure went sky high and he fell up the steps going into the house.  Blood everywhere.  No big harm done, but just a gory reminder that he is still shaky in every way.

Eyes wide shut

We have approached what is quite a horrid phase of PSP.  While physically completely debilitated, basically unable to move other than to swallow, eyes forced always shut, Mom still seems to be mentally aware. She's now officially a prisoner in her failing body.

I am horrified.  I'm not sure at this point if I should be wishing for a hasty end to this, and I'm ashamed of myself for even considering it.  The thing is, she seems very comfortable. Her hospice care is wonderful; she gets physical therapy twice a week and a massage bi-weekly.  She is eating, albeit pureed food.  She responds. She sometimes smiles a little.

In fact, she's lost none of her marvelous sense of humor.  We actually had a great time during my visit last week, giggling like crazy.  See, two of the gents at the home had a little shouting match, all up in each other's faces - typical strutting male stuff.  The entire common area could hear their salvos:

"You talkin' to me?"

"Yah, you.  I don't like the way you look." 

"Well, I'm sick of your shit, too."

"Get up!  I'll show you what for!"

Never mind that one fellow was sitting in a chair, strapped to an oxygen tank, and the other wobbling precariously behind a walker.  Nope.  They were ready to duke it out.

So, a fun day.  Also, Mom may have difficulty responding, except when you tell her you love her.  Then the answer comes, clear as a bell:  "I love you, too, sweetheart."

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.