Enter The Twins, Pain and Aggravation

First I sincerely apologize to everybody to whom I’ve promised various things.  Life is not going in anything remotely resembling a straight line.  I feel caught up in a whirlwind–no, more like the vortex of water flushing down a toilet.

I don’t have a toilet, but other people usually do, if they live in developed nations.

Dad just got home yesterday from the nursing home where mom dumped placed him for six days while she went to visit her relatives.  Dad did not enjoy it, and I ran myself ragged going back and forth to the nursing home, which fortunately is not far away, to my house, to the store to get him things, to therapy an hour and a half away….

Dad was discharged from the nursing home Friday at noon.  Mom came home in the evening.

I settled in for some deep Shabbat rest yesterday, but my phone rang at ten a.m.: It was Mom, sobbing that Dad had fallen and blood was coming out of his head and nose.  He was unconscious but seemed to be breathing.  She had called 911.  Shit.

CALL HOSPICE NOW!  I screamed into the phone.  We are not supposed to call 911 without calling Hospice first, but she panicked and did it anyway.  Now we would be covered up by the fucking millions of Keystone Cops that stand in place of an Emergency Medical Service here in West Bumfuck.

I grabbed my knapsack, which serves as my 24 hour kit as well as a purse, threw some food in my bewildered pup’s dish, and ran out the door hoping to beat the ambulance to my parents’ house.  Dad was on the floor, unconscious and bleeding, just like she said.

He looked like he was in the process of checking out, and I didn’t blame him a bit.  But I did lean down to his ear and softly sang, “Shma, Yisra’el, Adon-ai Elo-heinu, Adon-ai Ehad,” which is the central prayer of the Jewish faith:

“Hear O Israel, Adon-ai is your G-d, Adon-ai is ONE.”

Well, damn me if he didn’t start singing it with me!  He was almost drowned out by my mother’s loud sobs, but I heard him, and he started cussing me out for leaning on him, which I might have been.  I sat up and he still cussed at me for leaning on him, so I knew that he was very much alive, although in rough shape.

After a while I heard the screeching siren shriek of the meat-wagon, driven by a team of bozos with spanking new uniforms.  They looked like milkmen on a spree.

They were planning to strap Dad to a backboard, but I talked them out of it, citing his spinal stenosis, so they scratched their heads for a spell and then brought their ambulance gurney into the house and strapped him onto it.  At least it had something that passed for a mattress.

The trouble began when they tried to get him out of the house.

My parents’ house is not built for ambulance gurneys.  A steel spiral staircase blocks access to the only egress in the house, and the bozos couldn’t figure out how to get out, since they had raised the gurney up on its pneumatic legs, and it wouldn’t pass by the stairs anymore.  So instead of lowering the gurney to the ground and picking it up and over the stair rail, they tried to pick it up with the bed part four feet off the ground.  So the idiots actually lifted this thing, with my dad on top of it, over the railing, grazing the ceiling and taking a layer of paint off the stair rail.

I tried to move my car out of the driveway, because I had a funny feeling we were not done with the Keystone Cops.  I was right.

As I was backing up the dirt-road hill that stands in for a driveway, I looked in the rear-view mirror, and glimpsed the gigantic red nose of the county Heavy Rescue truck.  Trapped.  Shit.  Hit the parking brake and cut the engine, since I was out of gas and running on fumes already.

I got out and said “Hey” to the driver and he said “Hey” to me.  Introductions over with, I advised him that heavy rescue was not needed, as my dad was already in the ambulance.  He cut his eyes at me and said that first of all he wasn’t Heavy Rescue, he was just driving their truck, but since he was a First Responder and had heard it over the radio he was obligated to go and check things out.

Suit yourself, I told him, but you’re going to have to move your vehicle so I can get out, and so the ambulance can get out, because there is no more room in the driveway.

Well, the Heavy Rescue truck backed up the hill, spewing gravel, and tried to find someplace to turn his rig around.  I admit that I smirked a little when he backed right into the ditch you have to watch out for on that dirt road.  I backed around him and got onto my own road after negotiating the tricky spot where the road does a wiggle going over a creek.

I’m too tired now to write anymore, so you’ll have to stay tuned.

 

Here There Be Monsters

When I was a little girl, the space underneath my bed was rotten with monsters.

I had to take a running start to make the three-foot leap into bed, so that a scaly hand or tentacle would not snake out and snag me, dragging me into the dark waiting maw, where they would all fight over my little body, tearing it to shreds, and that would be the end of me.

Now I’m finding that that leap is impossible; it’s futile; the waiting monsters are licking their chops.

My dad is declining rapidly.  He’s been hallucinating, confusing familiar sights and sounds with threatening nebulous images.  Well, he IS an artist, and my favorite show of his was called “Fantasies and Daydreams.”  And now his imagination creeps up on him from behind, casting veils of illusion over his senses.  He dozes, and sudden terrors trigger his fight-or-flight response: he flails with hands and feet, and today twice pitched forward, and would have launched himself out of his wheelchair face-first on the floor, had I not been right there to lay a reassuring hand on his shoulder and tell him it’s OK, nothing is going to harm him.  He wakes from these fits, thank God, when someone intervenes.

The hospice nurse brought up the possibility of giving him a small dose of Haldol, a major tranquilizer and antipsychotic, but my mother voted it down.  She’s worked with the elderly for most of her life, and seen Haldol used as a way of drugging “problem residents” in nursing homes, so that they cease to be a trouble to the nurses.  I’ve tried to explain that the idea here is not to drug him into a zombie, but to relieve him of horrible experiences that are eroding the little quality of life he has left by transforming the music he loves into threatening voices, and the beautiful forest where they live, which has always been an inspiration to him, into a hall of shifting and changing faces, leering with evil eyes and gaping mouths.

I think she will reconsider the Haldol shortly, if for no other reason than to relieve herself of the exhaustion of constant vigilance.

Last week he even got out of his hospital bed somehow, in the middle of the night, and must have wriggled across the floor–he can no longer walk, and he can’t control his arms and legs enough to crawl–and ended up wedged between the sofa and a chair.  The only reason my mom found him at six in the morning is that the upstairs bathroom was being worked on and she had to go downstairs to use that one.  And she heard him moaning, and there he was on the floor.

The drill now is that when he ends up on the floor, we call Hospice and they decide whether to send over a nurse, or to call the First Responders to look him over and get him back into bed.  That is what happened in this case, and my mom said they were very rough and literally dropped him on the bed, didn’t bother to get him pulled up onto the head of the bed but left him with his feet hanging over the foot of the bed.  Mom tried to shift him up, but couldn’t do it, so there he lay until the morning attendant arrived.  Dad was so worn out by the whole process that he was unable to even sit propped up that whole day, and besides, he had hit his head again and was really “out of it.”

In the past, when those scenarios occurred, we would call the ambulance and he would be taken to the hospital, and we would spend an anxious and exhausting eight hours waiting for the CT scan and all that to be done, and he would either be discharged home or admitted for observation.  Now that we’re on Hospice, we don’t go to the hospital any more.  We’ve all agreed that we are at the end of Dad’s life, and the aim is to make him as comfortable as possible as we wait for the end.

It’s devastating to see the man to whom I have compared all other men, and found them all wanting, wasting away before my eyes.  I know I’m not the only one to have this experience; and compared to many others, his deterioration is blessedly mild.  He is not in some hospital hooked up to machines.  He is in pain, but it’s controllable, and he’s able to sleep most of the time, day or night.  He still recognizes me, and we still have our “le’chaims” every afternoon.

Today was different, somehow.  I think he was exhausted by the hallucinations and terrors.  He had trouble holding his little whiskey cup, one he had made himself (we always have our whiskey out of these cups), and the liquid didn’t always make it exactly into his mouth.  The right side of his mouth droops from a stroke he had early on in this process, and his food and drink often make their way down the resulting crease into his beard.  My little dog Noga loves to clean his face, if the opportunity arises and no one intervenes–just the way she loves babies, because they usually wear most of their meals on their faces and hands.

Mom has been sick for months.  She’s been very short of breath, breathing at a rate of around 30 breaths per minute.  Normal is 12-14 for an adult.  I’ve been hounding her for months to go get a chest x-ray and pulmonary function testing.  Finally she started wheezing badly and her girlfriends began to make comments, so that propelled her to make an appointment with the “doctor.”  I put that word in quotes because the person who wears this particular MD is, in my experience, completely incompetent.

True to form, the “doctor” ignored the fact that my mother told her (at least, she SAID she told her) that this has been going on for months and months, and possibly over a year; that she has lost weight, and has trouble sleeping because of shortness of breath.  She even has to stop halfway up one flight of stairs to catch her breath.

So she did get an x-ray, results to follow, but was denied the pulmonary function testing that I feel is mandatory under these conditions.  Instead she came home with a prescription for an antibiotic and a course of steroids.

The steroids will make her feel better regardless of the cause of the chest issues, but will not address the underlying pathology.  And it will increase her baseline irritability and labile behavior–not good.

In medicine we have this thing called “differential diagnosis.”  It’s a way of sifting through all the things an illness could possibly be, first casting a wide net and then crossing things off the list as they are ruled out, either by the process of logic or by test results, and hopefully a combination of these, along with a dose of clinical know-how, and the faculty of observation.

So in the years that I have been observing the evolution of this process, I have whittled the possibilities down to two:

1. Cancer

2. Cancer

3. Restrictive lung disease

I’ve ruled out COPD (Chronic Obstructive Pulmonary Disease) because that is always accompanied by cough, usually productive of sputum, which she does not have.

She did smoke in the past, approximately 40 pack-years (the number of years smoking times the number of packs per day), but quit about 40 years ago, so smoking-related lung cancer is unlikely.  However, there are lung cancers that have nothing to do with smoking, or are made more likely by a person having been a smoker in the past.  I know the common wisdom is that after a person has stopped smoking for a certain number of years, their risk of cancer is as if they had never smoked, but I have never believed that, having seen otherwise in clinical practice.

Restrictive lung disease happens when, for some reason, the lungs become stiff and cannot move oxygen into the blood.  The late Ralph Nelson, MD, a brilliant physician who devoted himself to medical illustration, dubbed people with restrictive lung disease “Pink Puffers” because they manage to make up for the stiffness of their lungs by breathing faster: therefore they don’t turn blue the way people with other lung diseases do.  My mother is a classic Pink Puffer.

But restrictive lung disease can result from certain cancers that infiltrate the walls of the lung tissue, making the lungs stiff, necessitating an increase in the respiratory rate, and hugely increasing the work of breathing.

I’m feeling sorry for my mom, even though I don’t love her.  I hate to see anyone, any creature, suffer.  I suspect that the process of definitive diagnosis will be a long and unpleasant one.  Believe me, if I were still in medical practice, she’d have her diagnostic workup done, not yesterday, but a year ago.  And then….what would happen to them?  I can’t even take care of my dad alone, due to my own health issues, let alone the two of them.

Tonight I feel as if I’m looking right down the throat of the monster that takes lucky people with two living parents and makes them suddenly into orphans.

 

Just a Hunch

I take care of Dad on Mondays and Wednesdays, from 11:30 till 5.  I give him lunch.  He always has something good in mind for me to construct for him (like sardines, ugh).  It makes my heart full to do anything at all to make his life easier, these days.

On Mondays the Hospice nurses visit.  They are certainly angels come to minister in a bleak and terrifying landscape.  Dad tries to tell her how Mom bullies him, he’s afraid of her.  Now that he’s helpless, he can’t do anything to hold her in check when she explodes.

I see it all the time: the way he looks up, terrified, when his barely-functional hands betray him and he drops food in his lap.  He says “Damn,” as if to let her know he knows he’s been bad; and he scrambles as fast as he can to pick the food up off his bib or his lap, wherever it’s landed.  He can no longer bend over from his wheelchair to pick things up off the floor.  Whenever something eludes him completely and ends up on the floor, he is near to panic.

I miss the obscenely obese old dog they used to have, who eagerly waited under the table for dropped treats.  He became incontinent and my mother had him put down.  I understand that she couldn’t handle my dad and the sick dog at the same time, but it makes me sad, and I miss the dog’s function.

But getting back to the hospice nurse who visits on Mondays.  She always checks Dad’s feet, since he is diabetic and feet are sitting ducks for getting ulcers and ultimately needing to be amputated.  We don’t want that.

He had sandals on, with Velcro straps that had been put on way too tight, probably by the untrained helper who gets him out of bed, showered, and dressed in the morning.  He does mean well, but he doesn’t understand certain things.  One is that Dad’s feet and legs are tremendously vulnerable, not only because of the diabetes but because his heart is failing, and that means his circulation in his lower legs and feet is even worse than usual.

On Monday, when we got his sandals and socks off, his feet were black.  I mean black.

The nurse was emphatic that he see a doctor about his feet ASAP; I didn’t need any convincing.

Since Mom was out, the nurse asked me to convey this to Mom as soon as she returned.

However, I know what happens whenever I do anything like that: “You make a big deal out of everything.  You’re always overreacting.”

I asked the nurse if she would please call my mother and tell her.  Mom would take her word of authority.  The nurse did that.

After the nurse left, I got Dad settled with his feet up on a cushioned chair, where he fell asleep.  I inspected his feet further, and as I did, I got a whiff of an odor I have smelled many times before: the sickly-sweet smell of dying flesh.  Tears wet my cheeks, made their way into my mouth, and I had to run for a tissue to catch the snot.  I always snot a lot when I cry.

After the nurse’s phone call, Mom did scramble to get an appointment with the podiatrist.  It’s now Wednesday, and he saw the podiatrist this morning.  A fungal infection, he said, and prescribed some cream.  I took a look at the feet today, and there are some bubbles; somehow I don’t think it’s fungus, but I will be very happy if I am indeed over-reacting.  I guess I have seen too much, and amputated too many feet during my time in practice.

Monday night I got take-out Chinese food for them.  I made an exception to my strictly Kosher diet, and ate some vegetarian fried rice.

Dad has been having dreadful, painful coughing fits, especially when eating (which takes more effort than you would think), and coughing up clear and/or frothy fluid: congestive heart failure.  The heart does not have the strength to pump the blood through the lungs and out to the body, so the blood stagnates in the lungs.  Fluid from the blood makes its way into the airway, causing cough and shortness of breath.  The person is literally drowning in their own fluids.

Dinner on Monday night was dicey.  He was coughing and eating fried rice, and I was afraid he would inhale it.  He was afraid he would drop something in his lap.

Although Tuesday is supposedly my day to catch up on errands, etc., I had a hunch I’d better stop by the house.  They were having lunch when I arrived.  Dad was really having trouble eating.  It seemed as if every bite he took cost him a coughing fit.  Finally the coughing overcame his will, and he succumbed to it.  He couldn’t catch his breath at all, and turned absolutely blue.

Hospice has provided us with an emergency med box, containing everything from Tylenol suppositories to morphine drops, to, frighteningly, drops to put under the tongue of a dying person to thin the agonal secretions and relieve air hunger.

Fortunately, the box also contains a few tablets of Lasix, a diuretic (water pill) that magically sends extra fluids to the kidneys, where they leave the body as urine.  That’s what was needed, to get the fluid out, and fast.

I rummaged in the box, found the Lasix, and then felt that I should at least call Hospice and let them know that I had pillaged the box.  Most Hospice family members are not doctors, and I thought it would at least be courteous to let them know I was going to use one of the contents of the box.

The nurse on call was not one I knew, and she didn’t know who I am.  She disagreed with my plan, and suggested I give him some morphine for comfort.  I explained that he had been on Lasix previously for his heart, but it had been discontinued because he was incontinent of urine, which made my mother mad.  Now she’s used to it, especially since other people change his bed and diapers, for the most part.

At that the nurse agreed.  I gave him the pill, and half an hour later he peed the fluid out.  He’s been mostly OK in the respiratory department since then, although I notice today that he’s starting up again.  I had our regular nurse call us in a prescription, so we’ll have a supply of Lasix for when we need it.

It’s Wednesday, and I spent the day with Dad as usual.  He’s been hallucinating a lot, and was pretty scared.  His feet were swollen again, so I wheeled him over where he could put his feet up on his hospital bed.  He took a nap for a while, and I read, until 3 o’clock when he woke up a bit restless.  He wanted the Westerns channel on TV.  I put that on for him, and suggested a l’chaim.  He lit up at that.  So I got us each a Scotch, and we toasted each other’s happiness, wherever our paths might lead.  Then we drank likker and made a running commentary on Bat Masterson and Wyatt Earp, he with his feet up and me sitting on his bed, happy as a couple of cackling crows.

I’m really, really going to miss him when he goes.

Which Disaster Will You Be Having Today, Ma’am?

It’s hard to know where to start.

When I last posted, I believe my dad was already in the nursing home, ostensibly for rehabilitation after a fall.  Medicare pays for 100 days of rehab, and then if long-term care is needed, one’s own funds have to be used until gone, and then Medicaid kicks in.  But then you are pretty broke, both the patient and the spouse, because the nursing home costs $6000 per month more or less, and that doesn’t include a lot of necessary things.  So for most normal people, it doesn’t take long to run through the savings/retirement account at that rate.

But it does include the basic care an invalided person needs, like feeding and diapering, showering, and a variety of entertainments for those who are able to take them in.

Well.  Dad’s 100 days were up, and Mom, who used to work at the very nursing home he was in, went to look at the room on the long-term care wing where he was to go.  I didn’t see the room, but apparently it was dark, tiny, and horrible, and Mom freaked out, and she was talking about it in front of Dad so HE freaked out even though he didn’t really understand what it was all about, and he started crying and in his broken language, begging to “go home to his house.”  So I freaked out too.

So Mom decided to bring him home, and I went along with that because Dad’s pleas were heartbreaking.

But.  I had tickets to Israel for the two weeks surrounding the festival of Purim, and Mom wanted to bring Dad home before I came back.  I didn’t like that idea, but when Mom gets a bee in her bonnet about something, it will happen regardless of any extenuating circumstances.

But.  I refused to cancel my trip on account of her poor judgement, so I put Noga in the boarding kennel and went off to Raleigh to spend a few days with my son before hopping a Delta flight (free with miles) to New York, and from there to Israel on Turkish Airways.

Time with my nearly-29-year-old baby boy was wonderful as always.  We never run out of things to talk about.

I arranged with my hotel to keep my car in their garage at $5 per day, cheaper even than the airport’s long-term-parking where you have to drag your luggage to a shuttle stop, then hope the shuttle appears before your flight leaves.  Then, when I returned, I would stay the night at the hotel and drive back to West Bumfuck (as my gay boyfriend in Jerusalem calls it).

My flight was at 7 am.  The night before, I called the front desk and asked them to arrange a cab for me at 5:30–the airport is a 20 minute drive, and since it was a domestic flight I only had to be there an hour before.

The desk person told me they don’t do that (calling cabs), but that there are tons of cabs hanging around at that hour because of all the guests leaving for flights.  But did I want a wake-up call?  I did.  At four am, please.  It takes me a long time to get ready in the morning.

Four am, both my phone alarm and the room telephone go off, and I levitate, thrashing for the light, the phone, whatever I could get my hands on first, sending everything on the bedside table flying: water bottle, glasses, asthma inhaler, cell phone, telephone, lamp.  Fuck.

I felt around and got hold of the lamp.  It still worked.  Then I collected the rest of my belongings, calmed down, and went for the shower.

I got down to the lobby with my bags at about twenty after five.  There was a cab waiting outside.  I rushed to the desk and asked them to reserve that one for me; but at that very moment a couple jumped in and off it went.  So I asked the clerk to please call another one, which she did.  I finished checking out and sat down to wait for the taxi.

An elderly yet fit couple came down, checked out, and sat down to wait for a cab.  Their flight was three-quarters of an hour after mine.

The cab showed up forty-five minutes late.  We all rushed out.  They had a lot of luggage; it took several tries to get it all arranged so that the back hatch would close.  By now it was well after six.  There was hardly any traffic; I entreated my driver to go faster, but he just bumped along.  It wasn’t his flight, after all.

In short, I arrived at the check-in exactly five minutes late.  Would they hold the flight?  No.

But I could go on the next flight, which got into JFK at 1:30 pm.  Great: that was exactly the time my Turkish Airways flight took off.  I called Turkish Airways.  It took a while to get someone who spoke English on the line.  Wouldn’t you think they would have English speaking customer service people in their New York office?

Anyway.

There is only one Turkish Airways flight to Istanbul (the only place T.A. flies from JFK) per day.  I could take the same flight out the following day: for an additional $444.

I considered it briefly.

Then it became clear that this pattern of obstacles was trying to tell me something.  But which thing was it?  Was it a test, to see how many obstacles I could overcome in order to merit to be in the Holy Land for Purim?  Or was it a sign that I’d better turn back, let go, let all my plans (and considerable money) slide?

I chose the latter.

So I took another cab back to my hotel (another $45 fare!), collected my car, drove the five hours back to get Miss Noga, who was of course thrilled to see me (and I her), and drove back up the mountain to beautiful West Bumfuck.  I fell into bed at 7 pm and slept until 10 the next morning.

I figured I’d better go up to the house (remember, I live in an outbuilding on the property) and see what was going on.

Mom was sitting at the table having her breakfast.  Dad was sitting at the table in his wheelchair, staring at the slices of cheese on toast, pawing at them with his nearly useless hands while Mom ate her food and mildly scolded him for playing with his food.

She had only just brought him home, it turned out.  She brought him home in her car, having forgotten that there is a county van service that would transport him safely in his wheelchair, for free.  The very same one we used last week to take him to the dentist.

I fed him his cheese, but the toast was too much for him: it stuck in his throat.  He can’t eat solid foods anymore.  It has to be mashed up or put through the blender.  And his hands have forgotten how to get his fork/spoon/hands to his mouth.  If no one feeds him, he doesn’t eat.

Then the home hospice nurse came and did an intake.  They have someone coming to the house a few times a week, and they provide a wide range of services that I am grateful for.

Mom has arranged for three hours a day of private nursing assistance.  The guy came today and got Dad out of bed, which was a good thing because Mom was unable to get him out of bed by herself.  TYS, TYS, not funny.

The bed of course was soaked in urine, since my dad is incontinent.  So he wanted to get up, naturally, but couldn’t because he is mostly immobile, and Mom is 87 although she has not so far awakened to that fact.  So they had to wait for the nursing assistant to arrive, to get Dad out of bed and showered and dressed.

I showed up there at noon, having slept till 11 am (am I stressed or something?!).  Mom had made Dad a sardine sandwich–his favorite!–that he had not had in 103 days, the time he was in the hospital and nursing home.  So Mom was very excited about the sardine sandwich.  Dad was asleep in his wheelchair, drooling on his front.

She sets this delicious sandwich down in front of him, with all sorts of expressions of anticipated delight.  He stares at it blankly.  I ask him if he wants a bite.  He nods, so I pick up the sandwich and bring it to his mouth, which remains closed.

“Do you want a bite of sardine sandwich, Dad?”

Nods.

“Then you have to open your mouth.”

He does, I slip the sandwich in, and he takes a bite.  I watch out for my fingers.  He is known to have a ferocious bite.

We manage another bite, and then his throat rebels.  I wait anxiously for him to get it swallowed.  I guess that’s the end of the sardine sandwich experiment.

But Dad reaches over, in a rare moment of coordination, and takes the top piece of bread off the sandwich: he uses his spoon to carefully butter the bread with apple sauce, then drops it on the plate.

Mom mashes up the remaining sardines and takes the bread away.  I feed Dad the sardines.  When they’re gone, he spies a bit of onion on the plate and points to it.  I feed it to him.  There are little specks of sardine here and there on his plate; he points to them, and I gather them up on the tip of the fork and put them into his mouth.

Then he has an attack of acute chest pain.  This has been happening more and more often.  In my opinion he’s having cardiac angina–when the heart muscle doesn’t get enough oxygen, it complains loudly with pain.  My mother has convinced herself it’s indigestion.  Well, whatever.  I try to convince her to give him a nitroglycerine tablet when he complains of chest pain, but she looks off into the distance, which I know means “I won’t.”  She says she will give him an antacid.

And now she’s decided that he doesn’t need his pain medication for his destroyed spine and shoulder, because “he just sleeps all day.”  I remind her that maybe sleeping all day might be better than being in agony all day.  Quality of life and all that.  Besides, he sleeps all days anyway.

She briefly brightens up at “quality of life,” being a social worker and all, but then starts complaining again that the medicine “dopes him up.”  So I don’t doubt she will withhold his pain meds.  If she does, I will speak with the hospice nurse and see what good it’ll do.

So here I am, back in my own little hornet’s nest in West Bumfuck, waiting to see what will be.  I know what will be; it’s a matter of when.

 

Tears and Fears and Feeling Proud (thanks, Joni)

“Tears and fears and feeling proud

To say I love you, right out loud…”

Clouds, Joni Mitchell

As much as this song has been the soundtrack to my life, so much more now.  My father is failing, day by day.  His mind is eaten full of holes by dementia.  I see the desperation in my mother’s face and for once, I feel pity for her.  And I am frightened by her own lapses, forgetfulness that goes beyond the simple effects of stress and depression that accompany her own slow motion loss.  I wonder for myself, how will I navigate this mine field alone?  There is no choice.  Certainly when the time comes when both of them are completely disabled, I will be able to enlist others from the community.  There is hospice here.  My mother started it, over twenty years ago, because there wasn’t any.  Now it will be ironic to be making use of that service.

 

No one ever thinks that they will be disabled, let alone old and disabled.  So few people make plans for that “in case.”  And yet, as one of my medical school professors put it, those of us who are still walking around with all our limbs intact are only “temporarily able bodied.”  TABs, he called us, from his wheelchair.

 

One day, coming in the door from his day as a medical student, he tripped over the door sill and fell down.  The next day he fell down again.  He kept on falling until he went to see a neurologist and was diagnosed with Multiple Sclerosis.  He was a second year medical student.   He was 28 years old.

 

He did not quit med school, but kept on going, at first with crutches, then in a wheelchair.  He did his residency in Rehabilitation Medicine.  So when the newly paralyzed, the new amputee, the new stroke patient became frustrated and wanted to say, “But you don’t know what it’s like….!”, they had to shut their mouths and get on with their therapy, for there was Dr. Mitchell in his wheelchair, looking at them and saying nothing, for nothing needed to be said.

 

My father was an exercise freak, in his day; in fact, he still is.  Until he was 83 years old (he just turned 88), he rose every morning at six and did a half hour of cardio exercise and half an hour of weight lifting.  And then he would start his day of throwing around 100 pound sacks of clay and glaze materials, always busy doing something radically physical when not seated at his potter’s wheel turning out exquisite works of ceramic art.

 

Everything he used, he made himself, from small hand tools right down to the potter’s wheels themselves, up to the huge walk-in kilns.  If he needed something made of metal, he welded it.  If he needed something electrical, he wired it.  I grew up that way, too.  He taught me to take lack as a challenge to create.  If I wanted to make a lamp out of a piece of driftwood, I went down to the hardware store, got the pieces that would make a lamp, figured out how to splice wires (they are color coded, it’s not hard), and made a lamp.  I never knew that you “couldn’t” do anything.  It was a matter of not knowing how yet.

 

So to see my father now, standing precariously balanced on his feet, with his arms completely tangled in a sweater that he couldn’t figure out how to put on: well, I can’t even express my feelings of grief and loss and sadness for him as well as for me, because he has lost the man that he built from scratch, and he is cruelly aware of it.

 

He tries hard to be philosophical.  He has always been a philosopher.  He acknowledges that there is no point in fighting it–and then he resolves to do battle with it, and he does, for a moment…then he falls asleep, or becomes disoriented, or gets distracted; and it seems that he has lost yet another rung in the ladder that only ever seems to go down, anymore.

 

But I am proud of him, nonetheless, for trying.  He does get on his exercise bicycle every few days, and there he pedals for a few minutes, and sleeps for a few minutes, and goes back to pedaling.  I made him a seat belt out of a luggage strap, because one time he fell asleep on his bike and fell off and hit his head again, and was tangled up in the pedals and arm rests besides, and my mother had a time getting him out (I wasn’t there).  So now he is very careful to put on his seat belt, because if my mother catches him without it she will give him hell, and he will do almost anything to avoid that.

 

I admit that I am afraid that I too could end up like that.  And even though my mother does give him a hard time, she is there for him.  For me, it will be different.  I have little hope of having a partner, anymore.  So I would be in some kind of “home,” as they say euphemistically.  I don’t relish that idea.  It makes me think about premature endings.  Even worse, it makes me think of being helpless and at the mercy of strangers.  I try to envision Dr. Mitchell looking at my self pity with quiet amusement; then I think about the wife that he comes home to every night and the effect vaporizes.

 

I wish I had a better ending for this post.  I love to end my pieces with something snappy, but tonight, nothing comes up.  I will have to take yet another lesson from my father and when in doubt, just keep putting one foot in front of the other.