Not So Fast

Uh-oh.  My dream of hitting the road and being a wandering gypsy might get a little sidetracked.  My aunt and uncle both have MRSA (Multiply Resistant Staph Aureus) and the entire family is in an uproar.  They are both very elderly, and between the illness and the stress they have both gone off the deep end into dementia.  Various family members are taking turns caring for them.  I haven’t been tapped yet, but it seems only a matter of time…

And yet I still intend to pick up my RV as planned, drive it home, pack up, and if need be drive to (chilly) Florida where they live.  I do worry about myself, because my immune system is not so good.  I hope I can avoid yet another family obligation, as selfish as that sounds.

I’ll keep you all posted on the developments…

Time Slave

Dearest Readers, I don’t know where to begin.

Everything in my life is a cliche.

Meekly I cave in to my mother’s demands, even when it means harm to me, physically and emotionally.  She publicly denigrates my role as my father’s caregiver.  The Hospice nurse coordinator visits.  I try to explain my situation as a person with spine injuries who cannot physically help my now paraplegic father.  I can’t transfer him from wheelchair to bed–“I can do it,” my mother interjects, with a snort, a face twisted with disgust.

I explain to the nurses how many, many times my father has fallen during my mother’s attempts to transfer him–how many times the on-call nurse has had to find their well-hidden home in the middle of the night, because once my father is on the floor, she can’t get him up.  How many times EMS has had to come, to check him for injuries and get him back into bed.  How many ER visits, before he went on Hospice and no longer goes to the hospital unless he has broken a bone or something else fixable.

Her glare reminds me of her intolerable cat.  He was re-homed three times before she got him at the shelter.  You know what they say about pets resembling their people….it’s that people are attracted to pets that share their personalities, is all.  That’s clear.

I see what her body language (and her face, twisted with disdain for me) says:  the same thing it said so many years ago, before I left with the intention of never returning to the parental hell-hole: “You’re useless,” she used to say then.  Now she says it again.

If I mention my disability, I get a “Hah!”  Which means to say, “You’re just lazy, a parasite on The System.”  No amount of stuttering defense on my part that I worked very hard in my career, that I loved my work, and would never have left it except for my disability–her head turns, face twists–my stomach climbs into my esophagus, I feel sick but can’t do anything about it.

On Mondays and Wednesdays, from 11:30 am to whatever time she gets home in the late afternoon, I take care of Dad.  Yesterday was Wednesday, and he had a dentist appointment at 1:30 pm.  We usually call for the rural transport van to take us to appointments, but this time she decided that the caregiver who comes in the mornings to get him out of bed, shower him etc. (this she cannot do) would help transport him in my car.  I was not consulted, but told, with a large dose of sarcasm, that this is what would happen.  She said she had called the transport, as she said she would do, 48 hours in advance of when we needed them.

They were full up, she told me the morning of the appointment.  That has never happened before.  She was lying, as she often does.  She sees no evil in lying, if it suits her purpose.  She probably forgot.  Why else would she choose to pay the caregiver $12 an hour over the transport, which costs $4 for door-to-door service with the wheelchair and assistance getting through doors, etc.?

So to the dentist we all went, Dad, the caregiver, and me.  It was a quick appointment, so we were home within the hour.  The caregiver said his goodbyes and headed off.

His tail lights were still visible going up the drive when Dad announced he had to go to the bathroom.

This is a hard one for me.  I was trained up in extreme modesty.  I have seen my mother not-quite-naked once, my father never.  So now I’m expected to take care of his intimate needs.

But a need is a need.  Right now I’m more worried about getting him from wheelchair to toilet and back, than I am about what to do regarding the bodily functions and subsequent clean-up.

So I get him into the bathroom in his wheelchair, which is already a difficult job.  When it started becoming clear that he would no longer be climbing stairs to take a shower, some 3 years ago, I designed a wheelchair-accessible bathroom for downstairs (I love designing bathrooms).  I purposely designed it with a lot of open space for safely turning and maneuvering the chair.

My mother, who can’t stand open space, immediately filled it with chairs and bookcases for storing towels, even though I designed a closet area, convenient yet out of the way, into the layout.  I guess she needed something else to complain about, because of course the steam from the shower is warping her bookcases.

Anyway.

I got Dad into the bathroom, moving furniture along the way.  I got him to stand, unsteadily holding onto the commode frame I installed for just such occasions (and to keep him from falling off the toilet and getting wedged between the toilet and the sink, which happened twice before I put in the grab assist bars).  Dissociating quick, I pulled down his sweat pants and diaper so I could get him on the john.

But not quick enough.  He lost control of his bladder all over his clothing, the toilet, the floor, and–me.  He was mortified.  I was dissociated.

He apologized profusely, and I felt helpless.  We both felt helpless.  He said he was finished.  I saw he was soaked.

The next task was to get his sodden clothes off him (even his socks were wet!), wash his wet legs, and give him a washcloth so he could clean up his “delicate parts,” as I told him, which got a laugh out of him, at least.

Then I had to get dry things on him.  While he was cleaning his delicate parts I had laid out clean things for him: sweat pants, diaper, socks.  Draping a towel across his lap for modesty, I got his socks on.

But that was all.  I got his diaper and pants as far as his knees, but then he had to stand for just a moment so I could pull everything up where it goes.

He was too exhausted by the effort of standing the first time to get himself out of the chair.  I was too exhausted from the first time to pull him up–and I didn’t want to risk dropping him.   Why didn’t I think of myself, my disintegrating spine, which is on the same trajectory as his ruined vertebrae?  Why didn’t I just leave things as they were for the moment, cover him up, and go watch Westerns and have a Scotch with him in the living room?

My mother, is why.  I was afraid of the consequences of being too disabled to haul Dad around.  So I did my best, and hurt myself again in the process.  Today I am one hurtin’ puppy. My neck is in such a spasm I can’t turn my head.  Shit.

Why don’t I get it, and stop acting like a slave?

So back in the bathroom…after a couple of tries, Dad and I both called it a day.  I got his bathrobe and draped it over his lap, and we wheeled into the living room.  I put on the Westerns and he watched Bat Masterson shoot ’em up without breaking a sweat while I cleaned myself up as much as possible.

I wonder if Bat Masterson has trouble controlling his bladder now that he’s old.

I dreaded the arrival of She Who Must Be Obeyed.  Trigger, trigger, trigger….faster trigger than Bat Masterson.

Luckily She had had a good day out, and didn’t humiliate the two of us on the spot.  But it will come, believe me.  It will come.

The hell-cat, who never makes an appearance when She is out, came down the stairs demanding food.  She clucked over him and fed his already bloated body, while Dad sat half-naked in front of the TV.

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.

 

Narcissism and Slavery

As the festival of Passover approaches, it’s a tradition among some of us, Jews and non-Jews alike, to start thinking about the Passover story as an allegorical reference to how we limit ourselves, and how we can use our inner resources to liberate ourselves.  We think about our Inner Pharaoh, and what we need to do to get free of him.

The Hebrew word for Egypt is “Mitzrayim.”  The word can be broken down into its roots: “Mi” = “from,” “tzr” or “tzar”=narrow place, tight squeeze, trouble, “yim”=masculine plural ending.  So you could say that our own personal Mitzrayim is the narrow, tight places in which we find ourselves.  Our challenge during the spring season of new growth and opening is to do just that: to split the Red Sea, to walk through scary tight places in order to remember who we are, and to grow past our narrow-minded presuppositions, to give birth to our newly liberated selves.

The other day at the nursing home my mother commanded (not asked–commanded) me to appear before her, at her house, at seven PM.  She refused to give me any details, just “be there.”  So I showed up at 7:30, since I had something to do prior and she had not asked me if that was a convenient time.  Did it give me pleasure to know that she would be annoyed?  Perhaps, yet I also know that annoying her will eventually come back to haunt me.  Sometimes it’s worth it.

I got there, and she is sitting in Dad’s recliner, which instantly puts me on guard.  There is this thing in Jewish culture where a person’s chair is part of their personal sacred space, and intentionally sitting in someone else’s place is considered an act of disrespect.  So I am on guard anyway, and this just confirms that I better stay there.

As I perched on the arm of the couch, not wanting to sit in HER place (and besides, it gives me the creeps), she pronounced clearly and with authority:  “I am NOT asking your permission.”  

“OK,” I said, waiting for the other shoe to drop.

Then she tells me in great detail of her plans to bring Dad home from the nursing home, how she and I will care for him with the help of whatever aides she can find; that she’s located a couple of them and they only charge $14 an hour, and besides, we would only need them for showering….on and on.  Apparently she has not taken into consideration that it takes two young strong people to get him from the bed to the wheelchair, to the toilet, to diaper and dress him…and he’s been discharged from Physical Therapy because he’s not made progress….and his meals are now put through a blender so that he doesn’t choke, which had been one of my big concerns even before the nursing home.

And She Who Must Be Obeyed is NOT asking my permission.  That means I don’t even have to bother voicing my concerns, because they’ve already been summarily dismissed.

I decide that I don’t have to have a “dog in that fight,” as they say here in the mountains.  I keep my mouth shut.  Poor Dad will be the one who suffers, and I hate that, but since “my permission” has not been asked, I won’t ask a lot of permission to be out of the country when I need to be.

And I’ll need to be, because that scenario is so excruciatingly painful to me that I will have to give myself a lot of space, knowing that injuring myself in order to try to further Mom’s follies is not going to help Dad, in the long run.

A few days later, I am told that “we” are taking Dad to the dentist.  The aides at the nursing home will help us get him in the car.  Who will get him out?  Oh, they have a wheelchair at the dentist.  She already checked that out, Stupid.  

I don’t like this.  I’m just getting over an episode of seriously-bad-back caused by catching Dad as he was on his way to the pavement, after taking him to another appointment.  Mom had, in her trademark style, strode around to the driver’s seat, leaving me to somehow get Dad into the back seat.  He collapsed, and I was holding him up calling for help, when one of the familiar Viet Nam Veteran street people came and helped me get him into the car.  I gave him all the cash I had, and I wish there had been more.  But it was too late for my back.

So I told her my back won’t take it, and she sneers at me and says that hers will.

There is a county transport service that has wheelchair accessible vans.  I told this to my mother, who immediately denied it.  Then she called about it, and wonder of wonders!  Of course it was her idea now; but at least.

“You will be there at 12:30 to meet the van.  You will ride in the van with Dad to the dentist.  His appointment is at one.  My appointment is at two.  So you have to ride in the van with Dad.  DON’T BE LATE!!!”

OK.  I will be there at 12:30, and I will go into the appointment, because Dad has been hallucinating lately and I worry about the dentist’s chair and all the noises, and his trouble swallowing, and the fact that he will not be able to hold the little saliva sucker thing that you now have to hold yourself.

Isn’t it funny how it really is the straw that breaks the camel’s back?  Here’s mine (my latest, anyway):

Friday afternoon, my mother shows up at my door with my mail.  She knows I don’t want her picking up my mail (we don’t have mail delivery here, so we have to go to the post office for it), but she had some excuse this time.

After an uncomfortable moment standing at the door, I decide to show her dinner in progress.  I always cook them a kosher meal for Friday Nights, and I bring it wherever they happen to be.  Nowadays I’m bringing it to the nursing home.  So I thought I would show her the kosher chicken rolling around in the kosher rotisserie, the pans of veggies, the potatoes…..oh, I do it all the time!

“See, Mommy, see what I did?  It’s for YOU, Mommy!  I picked these flowers for YOU!  I cooked this food for YOU!  Aren’t you happy with me now?  Won’t this make you love me and stop saying those horrible things to me?”  Says the little girl Laura, tears brimming but not falling, for that would make her laugh: “You need to grow a thicker skin.”

My kitchen is very tiny.  Very tiny indeed.  In fact, with my mother in it, I found I suddenly could not breathe.

“Let’s move into a bigger space.  I’m feeling claustrophobic,” I said.

Her little malevolent eyes glitter.

“Claustrophobic, eh?  What DON’T you have?  I think you’re a hypochondriac.

“Hypochondriac?” I repeat, shocked.

“Yes, hypochondriac.” She says emphatically.

I see her to the door, slam it, and collapse in a heap of raging tears.  As soon as her car leaves the driveway I start screaming.  I beg G-d’s forgiveness as I curse my mother, bringing down all of Hell’s fires on her head, into her belly, wishing her as painful a death as she engineered for her own mother…..and then I stop suddenly, realizing what has happened, that I have absorbed the poison from the wicked Queen’s apple, and if I continue in this manner I will, G-d forbid, become my own hateful mother.  My own personal Pharaoh.

So I have been praying for some enlightenment, some clarity, some “how-to” that will get me through this piece of time surrounding my father’s death.  My very own Mitzrayim: stuck in the narrows, whichever way I turn.  Face-to-face with Pharaoh, a smirk and a sneer and a twisting of the guts.

Here is some really good advice on learning to open one’s mouth from The Invisible Scar, a blog dedicated to healing for Adult Children of Narcisists (ACON).

But I am not ready to deal with the backlash that always comes with opening my mouth.  I am mortally afraid that if my mother escalates (a certainty) or lays hands on me (a distinct possibility), that I might “lose it” and do something violent, G-d forbid.

So I am keeping my mouth tightly closed, which I know is part of the Narcissist’s Weapon Arsenal.  I don’t want to emulate her, I don’t want to BE her–and I know that’s a danger here.  But right now I can’t deal with another knife wound.  Figuratively, that is.

Tomorrow, at the one o’clock meeting (DON’T BE LATE), my dad’s fate will be decided: does he stay in the nursing home until he dies, or do we bring him home to die, however long that takes ( he estimates two years, and I believe him).  Although I have been told I do not have a voice in this decision, I damn well do, and I will use it.  I plan to make my case very clearly that there is no way that he could possibly get the care he needs at home.

Feeding, changing his diaper and his bed three or four times a day, dressing him, getting him showered, all without any assistance from him, because he is so debilitated……these things cannot be done by an angry 87 year old harpy, and aside from feeding him, my arthritic body barely allows me to hold his head up to drink from a cup.

My voice says NO.  We CANNOT bring Dad home.  I WILL NOT see his last days sullied by that screaming harpy cursing him for being an old, debilitated man.  I will make that clear, in an unemotional, measured way: that is MY way, MY voice, because my voice has been crushed since I came out of the incubator at one month of age.

I did make contact with a regional Veterans’ Administration representative–my Dad is a WWII combat veteran–who is doing his best to get funding to pay for either nursing home or home care.  She, my mother, had been telling me with that “you stupid idiot, you should know better” tone of voice, that the VA would never give them money.   Well, guess what: they will be getting around $2000/month in Veterans’ Benefits–“For Dad and me,” she emphasized, as if I would want a single cent from them!  And of course she takes credit for the VA angle.  But at least it will take the financial incentive to take him home off–otherwise she would have to “spend down” her own money before Medicaid would pick up the nursing home tab.

Speaking of money, before Dad had his last fall, the one that landed him in the nursing home, I had been caring for him two days a week, plus making dinner for them (my own money, and let me tell you, kosher meat is not cheap) on Friday nights.  The county Social Services worker told my mom that there was money available to pay me for my work as a caregiver.  My mother turned it down on the grounds that a child should not be paid for taking care of a parent.  Thank G-d I have money to live on now, but I am furiously saving for the day that that source of funds dries up, when I turn 65, in 4 1/2 years.  That money would have come in right handy, to stash away for the desperate times that will follow the cessation of my private disability funds.

It is a terrible thing to say, but I am looking forward to the day that I am free from this elephant sitting on my heart.  I know what that will mean.  He is not yet ready to go; he needs to rectify some issues inside himself.  I don’t want to rush that.  But one thing I have learned in my chaotic life is patience.  I once heard that the best way to victory over an abusive parent is to outlive them.  I don’t know if I will outlive my mother, but in a way my death preceding hers would also be a victory.  I just don’t want to see her sneering face on the “other side.”

And since I have a feeling that that would be a very effective form of Hell, I had better be careful not to “become my enemy.”

Somehow I must do the work necessary to face down my Inner Pharaoh and in doing so, lose the fear that has kept me in slavery for 60 1/2 years.

Rage Can Kill You

First it was Human Trafficking Awareness Month, which I got through mostly by dissociating.  I thought I wasn’t, but I was.  My past homelessness and survival prostitution still haunts me, and although I have forgiven myself, I can’t forgive my parents for not rescuing me, nor can I forgive the shameless bastards who raped me when I was a naive little girl trying to survive on the streets.

Then it was Child Abuse Awareness Month.  I really thought I might get through that in one piece, but after the pieces on emotional and psychological and verbal abuse started coming hard and fast, I have to say I took a pounding.  I grew up with a relentlessly abusive mother and an absent, codependent father who played the sympathetic one and passed me his handkerchief while explaining that Mom wasn’t feeling well, had her period (he described her as a “wildcat in a hatbox” when she was menstruating), or any of a million excuses for her evil behavior.

Since my chief drive as a recovering Adult Child of Abusive Parents is still to try to mollify my mother and protect my now-disabled father from her wrath, I moved to the US from my beloved Jerusalem to try to help them in their old age.  He is 88 and she is 86, although she claims to be 85.

They live in what my dear friend R_ in Jerusalem affectionately calls “East Bumfuck.”  Their house is in a remote hollow, and the road leading to it is so steep that the UPS man refuses to drive down there–he parks at the top and walks down, except in the winter when their access road is a bobsled run and utterly impassible.  Then he leaves the package at the post office, which makes the postmistress frantic because they’re not supposed to do that and what if she gets inspected etc., but there’s nothing to be done about it.

Because of the nature of the road and the ice in the winter, they are often housebound for weeks.  Several years ago when Dad was still healthy he slipped coming down it and broke three ribs.  My mom broke her ankle on it.  My dad broke his wrist on it.

The power goes out frequently.  Since Dad has been losing his balance and falling a lot, I pitched a fit about the kerosene lamps they used to put around everywhere when they were younger, and they finally caved in and got a generator, which has made life easier in that area.

I moved here in a panic, in the winter of 2010-11, when there was storm after storm and they were completely snowed in.  My mother was putting on ice cleats and crawling up the hill to gather firewood.  My dad tried to help her and slipped on the ice and got another of the three concussions he racked up that winter.

I had been calling all the neighbors to please go and check on them, since if anyone asks my mother if she needs help she will say no, whether she does  or not.  Please, please, walk down there and make sure they’re all right and have what they need.  Since they only have one neighbor, I didn’t have many to call, and he never did go down there.  So I packed up my house in Jerusalem and three weeks later was on a plane to East Bumfuck.

I had a hard time getting there because it had just snowed three feet, so I rented the biggest SUV I could find and put the fucker in four wheel drive with the towing gear on and managed to get down into “the hole,” as the UPS drivers call it.  They were in pretty sad shape, and mighty glad to see me.  I had brought groceries and eight gallons of spring water, since the electricity was out and they didn’t have the generator yet.

Well, that was two and a half years ago, and the winters since then have been mild, and my dad’s dementia seems to have stabilized.  And now is the time to start talking about the fact that East Bumfuck is no longer an appropriate place for them to live.  My mother has a million reasons why they can’t move, which I will not enumerate here.  None of them is insurmountable.

Then comes the question, where will they move to?  Their first thought is to move to the nearest small city, which is a lovely artsy place with all the amenities and museums and theatres and lovely architecture.  I remind my mother that Dad is not going to get better, and she is not going to be able to handle him herself for much longer, since she is no spring chicken.

“Well if we move to Hip City, what will you do?”

“I will go home to Jerusalem.  I miss my home.

“But this is your home!”

“No, mother, this is YOUR home.  My home is Jerusalem, and my soul cries for her every day, all the time.”

Her mouth twists with disgust.  I get triggered.

Anger starts to brew.  What does she expect me to do, spend the rest of my life taking care of her?  Dad won’t be around much longer, although his own father lingered in a pitiable state till the age of 91.

I get hold of myself.  “I’ve sent for a packet from Lovely Hillside Retirement Community, where you can live independently until you need more help.”  She is a geriatric social worker and knows exactly what I mean, and knows the place.

“We can’t afford it.”

“I believe you can.”  I outline the plan.

“But what will you do?”

“I am going back to Jerusalem, and will visit frequently.”

Silence.

It’s obvious that HER plan for me is to be the caregiver, so that she can live the way she wants, with no regard to my life, my needs, my health…

Anger starts to brew.  I will not go into the childhood abuse issues that started coming up, because I don’t want to go there again.

Anger brewed into rage.  I live in a separate building, so there was no chance of confrontation, thank G-d.  Rage filled me, overcame me, and every time the sonovabitchin’ trains across the river blew their infernal horns, I was screaming with them.

I started feeling exhausted.  My exercise tolerance was for shit.  I started having these vague, vapory headaches, and I am not a “headache person.”

My blood pressure has been creeping up in recent months, to 130’s over 80’s, which is not good for a person who usually hangs out in the 120/60 range.  I felt so weird that I bought one of those home BP monitors:  150/100!  Fuck, I’m gonna die, and it’s all because I feel trapped by my guilt at not being able to fulfill my idea of filial piety without ruining my not-so-good health and sabotaging my future, which I hope will contain a home and a partner.  I went to my internist, and now have yet another pill to take twice daily.

At this point, my plan is to get them into someplace appropriate for their now and future needs, which is going to be a shrek in itself, since their house is a fine art museum which will have to be turned into money in order for them to afford the new place.  The property will be sold, so that means no inheritance at all for me because they failed to plan for retirement.

And they planned to use me as an unpaid caregiver, room and board included of course, with my social security for pin money.  But now I’ve come and thrown a monkey-wrench into the works, by coming to the realization that I deserve to have a life.  They also deserve to have a life, a pleasant and comfortable life.  But I’m a person too, and I sure don’t plan to live out the best years I’ve got left caring for people who made my whole life hell, and would continue to do so, if I let them.

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.