Article: Read the Transcript of TIME’s Cover Story Interview With Donald Trump

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Read the Transcript of TIME’s Cover Story Interview With Donald Trump

….and tell me whether you think his brain is in working order.  I’m not talking about his politics.  I’m talking about his neurologic status.  Reading this, I was struck by his round-about speech pattern, his omissions of words, his illogical statements (illogical in the sense of actual linearity and purposeful-ness).  A list of other red flags scrolled through my brain as I read the transcript.

From my point of view as a physician, Mr. Trump is in need of a cognitive neurology evaluation. 

So….what would we do if Mr. Trump (or Ms. Clinton) turned out to have a dementia?

On another note, how would we feel about a president with a well-controlled mental illness?  (Not fair putting these back to back, but oh well😆)

Please chime in on this one.  I’m interested in your opinions!  Link is below↘↙

http://flip.it/yXNQP

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.

 

And Here Goes The Other One…What Will I Do?

As my regular readers know, life with my mom has always been far from pleasant.

And now….Dementia Case #2.

I had suspected it, even before I left Jerusalem in 2011 (January 11, 2011, to be exact) to come to the US and help with my dad.  Fears out of proportion, throwing screaming fits in public and not just in private, arguing with the carpenter about whether or not she had paid his bill (she hadn’t).  He even came to me and asked if I had noticed anything wrong with my mom.  He’s been working for us for years, and never saw anything like that.

Interesting how dementia brings out a person’s true character traits.  Take my dad: soft, sweet, gentle, kind.  Very occasionally grumpy or moody, but who isn’t?

My mom, on the other hand, is selfish, angry, suspicious, and nasty.  And she lies.  In fact, she likes to say, “a little white lie won’t hurt.”

The hell it won’t!

But one or two of you might know her personally, and you will say, “Oh, but she is just the sweetest person!  How can you say such things about her?  It must be YOUR misperception.”

The hell I say!

That’s the way people with Narcissistic Personality Disorder operate.  They bask in public accolades, while conducting a Reign of Terror at home.  But the abused ones are in a pickle, because if we try to get help from anyone who knows her, they will shout, “How can you say such a thing about your lovely mother, who is such a gift to the community, such an angel, has dried so many tears and started so many non-profit charities!?”

So in general we just shut up and take it, and marry someone equally dysfunctional.

That’s the way I grew up.  And my dad was terrified of her and hopelessly in love with her, both at once.

Think “Mommie Dearest.”

No, she never dragged me out of bed to scrub the bathroom floor, but plenty went on, and I won’t elaborate here, because today I got the confirmation of a growing suspicion: she’s got dementia.

I’ve been too caught up in the emotional tempest surrounding Dad’s plight to really pay attention to her acting-out.  I’ve been mightily pissed off because she threw a bunch of pottery items that my dad made (he’s a potter) behind the refrigerator.  Right.  And she somehow disposed of a beautiful porcelain vase that Dad and I collaborated on back in my painter days.  It just “disappeared.”  And like the little cups that ended up smashed behind the refrigerator, every inquiry about my vase gets an “I don’t know” with averted eyes and a little smirk.

She’s been on a gaslighting campaign regarding my memory, accusing me of forgetting things that she never told me, such as important appointments.  Gaslighting, if you don’t already know, is when someone tries to make you think you’re crazy by setting up situations that don’t really exist.  It’s a power trip, or it can be used as a coverup for someone’s own mistakes.

Last year I went to the trouble of having a complete cognitive workup–lasted two days and cost me $1200.  And it turns out that I do have one very specific hole in my memory: reconstruction of long and detailed stories–which is distressing for someone whose job used to be collecting and reconstructing long and detailed stories, as a physician.  But my long, medium, and short-term memories are perfect.  So it ain’t me, babe, as someone once wrote in a song.

So this whole business of Dad being in a nursing home has brought out some interesting (heh) and instructive situations.  On a couple of occasions she has asked me to bring something from the house, and when I bought it, she would scold me for bringing the wrong thing, citing my “terrible memory.”

Today, in fact, she called me from the nursing home, asking me to bring Dad’s slippers and a couple of packages of pull-up diapers.  When I reached their house, though, she was already home, having lunch.  The slippers were sitting on a chair.  I picked them up to put them in my backpack and she screamed with her mouth full, “No, not that!  Those are his Pads.”  “Pads” are the brand name of the slippers.

“Didn’t you put these out for me to take?  Did you mean a different pair of slippers?”

“You don’t know what you’re doing.  Go take your shower.”  The building I live in does not have a bathroom, in the usual sense of the word, and I was in fact planning to take a shower at their house before going to the nursing home.  So, cursing under my breath, I did.

I hoped that by the time I finished my toilette that she would be in a more reasonable mood, but no luck.  As soon as I landed downstairs she began screaming at me about my terrible memory, and shoved a bag of stuff in my general direction.  It contained a couple of packets of diapers, with the already mentioned slippers on top.

“Wait a minute, Mom,” I said, trying to control my temper and not doing a very good job.  “These are the same slippers that you said were the wrong ones.  These are the ones that were sitting on the chair, and I picked them up, and you said they weren’t the right ones!”

“No I didn’t!  I told you to get the Depends (diapers).  You don’t know what you’re talking about.  You can’t remember anything!”

At that point I put my coat on, gathered up my stuff and the package, and sailed out the door cursing, not so much under my breath, and not caring whether she heard or not.

When the blood stopped pounding in my ears, I realized that my suspicion is dead-on: she’s sliding into dementia.

Now what am I gonna do?

My dad is safe where he is, but she is a loose cannon and could do anything.  She’s already made some disastrous financial decisions that I am powerless to reverse, because at this point it would be very difficult to prove her incompetent.  That may change very quickly.  But what am I going to do in the meantime, having to interact with her on a daily basis because of my dad, having her living in a place that is now completely inappropriate for her, and having her seething anger aimed in my direction?    Granted, part of the anger is due to the grieving process for my dad.  But that does not excuse her leveling it at me.

I can’t go to the Social Services people, because they all know her in her “public face” and none of them would believe me if I tried to tell them what’s going on.  And of course if they approached her about it, she would tell them all about her mentally ill daughter with the “terrible memory.”  She even has a story about how my memory got so terrible: it was the Transcranial Magnetic Stimulation treatments that have saved my life over the years.  That’s her explanation for why I can’t remember anything.  And of course the Social Services people would shake their heads and cluck their tongues, because they KNOW her and they know she’s a competent person, a kind, sweet angel.

So what am I going to do?

I don’t even know what to say….

I just got back from the nursing home, where they took my dad after the hospital.

Actually I stopped by Walmart to get a heating pad, two bottles of castor oil, a package of 5 cloth baby diapers, and a back brace I know won’t fit because of my curvy hips.  All this to treat the disc that’s bulging in my lower back.  I coughed it out a couple of days ago when I was still asthmatically getting over the mini-flu, the kind you get when you’ve had your flu shot and get the flu anyway.  But at least it was the mini-flu and not the whole thing.

So to treat the inflammation I am going to soak the baby diapers in warm castor oil, maybe mixed with eucalyptus or some other anti-inflammatory oil, maybe German chamomile, put a sheet of plastic wrap over that so it doesn’t stain the heating pad, slap the whole mess on my back, and listen to some soothing music while it works.

I got through yesterday by dosing myself up with the cannabis tincture I have been steeping for the past two weeks.  It got rid of the cough and relaxed the spasm in my back enough so I could get through the day without screaming in pain.  The stuff is miraculous.  Too bad it’s illegal in my state.  Actually it’s a Schedule IV substance in my state, which puts it in the same class as benzodiazepines; in other words, needs a prescription but considered low-risk for abuse.  But for some reason, the criminal code and the medical code don’t agree.  Figures.  I consider it medicine and use it as such.

My dad.  I can’t even wrap my head around it.  The brilliant thinker, the blazing torch of a teacher, the maker of achingly beautiful art: now unable to figure out how to use a pencil, unable to understand how to read a phone number, let alone use a phone–how could this happen?  Whose idea of a cruel joke is this?  It makes me want to run off and kill myself before I have a chance to get so badly off that I can’t even figure out how to do it.

I comfort myself by knowing that he’s much better off in the nursing home, where compassionate people take care of him.  They don’t belittle him for dropping crumbs on his clothes–they just put a bib on him and treat him like a normal human being.

They don’t scream at him for wetting the bed–they take it for granted that he will, and they check him every two hours at night and change the bed if it’s wet, and change his diaper if it’s wet, and treat him like a normal human being.

He doesn’t ask me who those two sisters are anymore–the nice one who helps him and takes care of him, and the one who gets upset all the time–those two sisters are my mother, the Dr. Jekyll and Mr. Hyde of her personalities.  The sweet one that everyone outside the home adores, and the control freak abuser that nobody sees but us–my father and I.

She is spending hours and hours at the nursing home, and making sure that my father and I are never alone together.  The look of hatred in her eyes, toward me, is more open than I’ve ever seen it before.  I’m sure that it’s because the love between my father and I is so apparent–he knows that each parting might be our last, and we tell each other we love each other and I give him a kiss on top of his bald head.

The last time I kissed my mother was several months ago.  She demanded it, saying she was jealous, so I kissed her on the cheek.  It’s not my fault that I treat her like a poisonous snake–with a long forked stick–because she is liable to strike without warning.  Has done, and does, and will do.

At least she finally admitted to letting her own mother die of lactose intolerance.  Did you know that people can die of lactose intolerance?  Yes, they can.  My grandmother had terrible diarrhea from it, and was losing weight.  The nursing home she was in did not have a doctor.  They had a Physician’s Assistant.  Pardon me, to any of you who may be P.A.s, but P.A.s do not have the level of education that an M.D. has.  Some are excellent clinicians and know when to consult their supervising physician, and some are full of themselves and think they know it all.  The one in that nursing home was the latter kind.

So they fed my Nana Ensure, a liquid food substitute that is milk-based.  It is full of lactose.  So she kept on having more and more diarrhea, and losing more and more weight, and they kept on feeding her more and more lactose-containing substance.

I begged my mother to put Nana in the car and take her to see a gastoententerologist.  “She’s old,” my mother said.  “What would they do anyway?”

“They would make a diagnosis and stop the diarrhea,” I said.  My mother made a face and told me I didn’t know what I was talking about.  I had only been in medical practice for ten years at the time.

So Nana died of diarrhea, like people die when they have cholera, only more slowly and in terrible pain.

And two weeks ago, before Dad fell again and broke his back and got yet another concussion, she suddenly started saying how guilty she feels that she didn’t do more for her mother.

And why this sudden bout of guilt?

My mother has become lactose intolerant herself, and got a little taste of what it feels like to have horrible cramps and have to run to the bathroom every ten minutes, and have your butt burn up because of the acid stools you pass.

But Nana couldn’t run to the bathroom anymore.  She had her liquid stools in her diaper, and her whole bum burned up from soaking in the acid stools.

So now Dad is in the nursing home, and Mom is acting like a jealous bird protecting her nest.  She has always considered me an inconvenience, but now my presence is indispensable, as it has been ever since I flew here from my home in Israel three years ago.  She tolerates me only because she needs my help with Dad.

Tomorrow we take Dad to the cardiologist, an hour and a half away by car.  We will have to get him into the car, and out of the car.  It’s generally me who does the heavy lifting, but now I’ve got a bulging disc, so we will have to have help from others both at the nursing home and at the cardiologist.

I know the nursing home will help get him into the car: it’s their job.  I also know the cardiology office won’t help get him out of the car, for liability reasons.  If one of their staff accidentally injured him, the practice would be liable to be sued.  So this will be an interesting exercise, since Dad can no longer walk without help.

Things have gotten so out of hand, so out of control, that I don’t even know what to say anymore.  I just try to “keep it between the ditches,” as Dad used to say, when he knew how to talk.

 

Sundowning and Other Strange Brain Behaviors

Last night as I sat by Dad’s bedside, feeding him chocolate ice cream (his favorite), which mostly ended up in droplets on his hospital gown, he asked me: “Do you hear that?”

“Well, there are a lot of things to hear.  There are people talking in the hall outside your room.  Is that what you mean?”

“No, I mean there’s a saw running.  Are we in the basement of the shop?  Did I, or we, leave a saw running?”

“I don’t think so.  We’re not in the basement of the shop.  We’re in the hospital.”

“No we’re not, we’re in the shop.  In the basement.  Please go turn off that saw.”

I listened for a bit to see what he could be interpreting as a saw, because he was getting a bit agitated.  In fact, he started trying to get out of bed.

There was in fact a sound that could be saw-like, if you didn’t know and your brain was addled.  It was an air compressor that feeds air into the high-tech leg-massaging pneumatic stockings he’s got on.  So I pointed that out, that there was a compressor running and that’s what was making the saw-sound.  He looked at me like I was trying to sell him a bill of goods.  But he calmed down about that, resigned, apparently, that no one was going to shut down the saw.

A bit later he heard a group of nurses chatting in the nurses’ station.

“I think they’re making a movie out there.  One of those spy movies, I think.”

“What, like James Bond?”  Sometimes it’s better just to go with the flow and not try to “reason” with a delirious person.  Arguing with them about their relative view of reality can agitate them.

“Yeah, sort of…(unintelligible speech sounds).  “Are you part of that movie?”

“No, I’m not in the movie.”

He nods his head and closes his eyes.

He’s sundowning.  It’s very common in dementia.  Somehow, when night comes on, even if the room is well lighted, they lose touch with reality.  Everything gets surreal and they can become frightened, and even try to run from unknown foes.  Many falls occur from this.  Unfortunately, in institutional environments it often leads to restraints: people being tied to their beds so they won’t climb out and fall.

It’s one of my greatest fears about my dad going to a nursing home, that they would put him in restraints when I wasn’t there.  I curse my mental illness for making it impossible for me to stay with him 24/7.  I can’t because I have to take this heavy cocktail of meds at night, and I wouldn’t be any good for helping him even if I was there.  Besides, if I don’t sleep I get very sick, and I can’t risk that.  I wouldn’t be any help if I had to be hospitalized myself, and I wouldn’t be able to spend quality time with him either.  So I am going to lobby for giving him a dose of Haldol at bedtime, to ward off the heeby-jeebies and let him sleep.

This afternoon I thought he was going to leave the planet.  He was Cheyne-Stokes breathing for a while.  Cheyne-Stokes is a pre-death breathing patten where the person takes 4-5 increasingly deep breaths followed by a period of no breathing for 10-15 seconds.  It’s the respiratory center in the brain shutting down.  I sat by his bed and cried my eyes out.  My mom, who had gone out to get us hot fudge sundaes, came in and saw me sitting there bawling.  At that moment Dad was breathing, so she said “What’s wrong?”

I said, “He’s Cheyne-Stokesing.”  She knows what that is, being a geriatric social worker, and having started up a hospice in this county.

“No he’s not,” she said.

“Watch,” I said, and he took four, five increasingly deep breaths and then stopped breathing for a good ten seconds.

She went over to him and shook him, and he opened his eyes and mumbled something unintelligible.

“He was just asleep.” she said.  We both know that people can go in and out of Cheyne-Stokes for days or weeks before they die, but it means the brain is getting ready.

I tried to get him to eat some ice cream, but he wouldn’t.  I have never seen him refuse ice cream before.  I asked him if he wanted water and he mouthed “yes,” so I got his pitcher and put the straw to his lips, but he couldn’t manage to open his mouth.  I told him to open his mouth but then he couldn’t close it.  So I took the straw and got some water in it and dribbled it into his mouth, and he swallowed it.

When my mom was out of the room, he opened his eyes and looked way up above his head.  His eyes widened, then he looked at the foot of his bed and mouthed, “Who are they?”  I know who he was seeing: the angels who surround a dying person.  I whispered the Sh’ma, the central Jewish prayer that is said twice a day and at the time of death, and I softly sang some other psalms.  He mouthed the Sh’ma with me, then calmed down and closed his eyes.

I was sure he was going to die today.  The nurses all got concerned too, and came in and checked his vital signs, but everything was ticking right along.

His doctor came in to see him later in the afternoon.  She said hello, and he perked up and smiled at her and returned her ‘hello.”

“How are you feeling?”

“Just fine, thank you.”

“Does anything hurt?”

“No, nothing hurts.  I feel fine.”

I was thrilled, and amazed, and felt like kind of a jerk for thinking he was moribund.  The doctor gave me a lecture on the phenomenon of Sundowning, even though it was bright and sunny at the moment.  I nodded my head.

Now I’m at home, having a break and writing this.  In a little while I’ll go back to the hospital and sit with Dad till ten or so, and try to keep his mind busy so he doesn’t try to climb out of bed to turn off the saw, or rip out his Foley catheter (which keeps his bladder empty), which he has been trying to do all day.  And I guess I’d better eat something.  All I’ve had today is a Cliff bar and a McDonald’s hot fudge sundae, not the best nutrition in the world.

Back on the Chain Gang

Ah, the blissful bubble of  NaNoWriMo is over.  Well, officially it’s over at midnight on November 30th, so I’ve got a day and then some to revel in typing my fingers off.  But let’s face it, I’ve got my 50,000 words and my Winner Certificate, so I guess I’m a Lame Duck WriMo.  And now, although I’m still banging away at it, I’ve come to a really difficult spot in my “novel.”  I’m hoping that putting it to bed for the night will help: let it incubate for a while, or perhaps compost, ferment, whatever gets it going again.

 

I decided to tackle some of the effects of entropy that have turned my living space into even more of a trash heap than it was before.  So I tackled something that just has to be done.  In case you don’t remember, I moved into my dad’s pottery studio.  He’s too sick to use it anymore, and I need a place to live.  It’s been quite an adventure, full of all kinds of challenges and roadblocks.  I’ll have to write a post devoted to the project and where it stands to date, complete with pictures of my electric toilet.  That’s right folks: I have an electric toilet, because this building is perched on the edge of a cliff and there’s no place for a septic tank.

 

Anyway.  Tonight I spent an hour putting my dad’s pottery tools away: you know, all those wonderful little tools he used to use to make his mind-blowing ceramic art.  A lot of them are found objects: a toothbrush handle, a cheese cutter, a rubber spatula.  I separated them according to function and size, and put them all in plastic bags and then into one of those Rubbermaid boxes I can’t live without.  I cried a lot.  I wanted to scream, but it would scare my little dog.  Times like this, I wish she had a temporary “off” switch so that I could just go ahead and scream without having to worry about somebody else’s feelings.

 

Tomorrow I have a busy day.  I won’t get to the next thing on my list, which is wiping the mold off of all my books and putting them in the bookcases, after wiping the mold off the bookcases first.  Yes, you read right:  mold.  The bane of the asthmatic: and I am an asthmatic.

 

You see, it is so humid here, on the cliff above the river, that while I was away for ten weeks resting in the bosom of Jerusalem, the humidity was at work making mold over all of my belongings.  Everything.  Furniture, clothes, even (and I am deeply offended at this) my banjo strap, that I made out of leather in 1974.  Arrrrgh!  One step forward, two steps back.

 

But on the other hand, I’m sitting here wheezing, listening to Queen on Pandora, my little doggie asleep tucked under my right elbow.  I spent the day with my old dad, who was lucid enough today to have a deep discussion about ceramic glaze chemistry.  We both love chemistry.  It’s just that most of the time, his brain refuses to cooperate, so we can’t discuss much and he goes to sleep.  But today was one of those increasingly rare days when relative clarity allowed us to have a rare and precious conversation about some pretty technical stuff.

 

I’d better go take a nebulizer treatment and take my handful of pills so I can get up in the morning and drive to Asheville to see the disability lawyer and my psychologist, now that I’m a certified Nutter.

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.

Full moon, empty brain

The moon is glorious tonight.  I watched it rising over the ridge opposite my little cabin, clearing the cluster of dwellings wherein lie the miniature dachshund family, the hound dog puppy that is growing bigger and louder every day, the chicken lady and her chickens, many fewer roosters than there used to be because they shot (yes, shot) and ate a bunch of them (they had 8 roosters, far too many), the guinea fowl that shriek like banshees…in short, the small village full of critters and the people who take care of them, that live in the little hollow across the road from me.

I have been attempting to jump-start my brain tonight.  It doesn’t want to kick into gear.  I try to think about something, and the next thing I know, I’m not thinking of anything at all.  I start a task, and what seems like moments later I find myself doing something entirely different, and it’s two hours later.

How does this happen?

One advantage is that I can’t seem to get too upset about it, because my brain can’t stay on task long enough for even that.  Well, that’s a blessing, I suppose.  I have to thank G-d for that, because otherwise I’d just go from being insane to being crazy.

Speaking of labels, I’m astounded by the level of stigma that still exists out there.  I see it everywhere in the media.  Maybe I’m just paranoid.  “Just” paranoid?  No.  It’s real.  It exists.  As real as the nose on my face.

The other day a family friend visited us.  This friend had a cancerous lesion on his nose and his ear, and he had to have quite radical surgery to remove the cancer.  He has subsequently had numerous surgeries to reconstruct his face.

His surgery team did a great job.  You really can’t see any sign of the reconstruction unless he’s in direct light.  Then you can see the “seams” where they put him back together.

But he’s hyperaware of the difference between his face now and his face before the cancer.  He feels like people stare at him.  His wife shared a story about some rude lady who did notice his scars and said, “What happened to your FACE?”  Isn’t that everybody’s worst nightmare?  To have your face look wierd, and have people notice it?

I feel that way about my brain.  If people could only see the way my brain feels to me, they’d say, “What happened to your BRAIN?”   And I find myself wondering, “Can they tell?  Do they know how weird my thinking is right now?   Can they see my Face, the one with all the scars?   But that scarred Face is  on the inside.  The one on the outside seems to look perfectly “normal.”

In a way, it heightens my connection with my dad, who has dementia as a result of his 50-plus year dance with diabetes.  Unlike people with Alzheimer’s-type dementia, Dad is very much aware of the malfunctioning of his brain.  It causes him great distress.  Dad is a brilliant man with a broken brain, and he knows it.

We spend every Wednesday together:  it’s Mom’s day off.  Dad and I very much enjoy our Wednesdays.  Some days are better than others, of course.  And that depends entirely on how both of our brains are functioning.

This past Wednesday we had our little moments, when neither of us understood the other at all.  This led to a bit of mental scuffling, as we each tried to wrap our warped brain around both our own thoughts and the other’s.  But we got it worked out.  It was all because I had to get Dad to take a shower and get dressed, ideally before Mom got home, because they were invited out that night.  And I only had five hours in which to get that accomplished.

It was a little like steering a boat in a quarter sea.  The boat pitched to and fro, and side to side, and my job was to keep it going straight, on course.  Well, we did get there.  Not exactly on time, but close enough for jazz.

Dad used to give me a very hard time about why I wasn’t “doing something with my life.”  Before he got sick himself, he just didn’t understand.  He thought that I had somehow turned lazy, content to do nothing and “live on the dole.”

Unfortunately, now he knows all too well why I never seem to get anything done.