Everybody Hurts

        Everybody hurts when there is dementia in the family.

 

 

 

I long for my dad the way he used to be.  I long for things to be the way they used to be.

I never knew how much pain a family could be in.  I never realized how this sort of thing could split us up into pieces.

When Dad's brain started failing, I started losing Dad.

When Dad's brain started failing, he started losing everyone.

Happy Christmas Night

Another Solstice has gone by.  Another Christmas is finished.  The older I get, the faster time speeds along.  Such is the nature of things.  I can remember when an hour was huge and a whole day was enormous.  The last two days have really emphasized to me the changes in my dad in his continuing deterioration from dementias.

Christmas Eve, I took him to Mass.  He is still able to walk a bit but I don't trust him on snow.  Since there was a bit of it, I dropped him off as close to the front door as possible and then went and found a parking spot.  He had managed to go inside.  So that part was good.

The part that wasn't so good was that the church was already filled up a half-hour before the Mass was supposed to start.  We are talking about a very small Roman Catholic Church in a very small dieing little town.  Some really little kids-- maybe kindergardeners and first graders-- were up front butcheri, I mean, singing songs when we got there.  We wandered up one aisle.  Dad in his abrupt demented manner went to sit where he found some empties.  The woman there hurried to tell him that she was saving the seats for five people.  [She was].  I gently and firmly led him away.  On our way back down the aisle, a couple had pity on Dad and slid over for us. 

During the Mass [I keep wanting to type "service"], Dad was able to chant some of the prayers along with everyone else.  Hymnals were of no use this time around.  Last year he was able to follow one.  This year, although he can still read after a fashion, he can't.  The stand up /sit down/ stand up routine was more difficult for him this year than last Christmas and even than last Easter.  He did manage though.

Dad told me that the priest is the same one that comes to the house; that he teases the priest for talking too much.  And it was true.  The priest certainly did talk too much.  I couldn't follow the homily.  Something about David retrieving an ark of the Covenant in the desert and the Virgin Mary being the ark for Jesus and he tried to squeeze in a movie-- the Raiders of the Lost Ark-- but by that time, he had lost me.  The lady behind us loudly whispered to her companion, "Follow the commandments.  Don't stray off the beaten path.  Listen to the Bible and to the Mother Church.  The end."  That seemed to be the gist of his message.  Lady behind us may have been thinking about some baking in her oven.  She kept double-time on the chanted prayers and was finished long before anyone else.  Even so, the whole thing lasted about an hour and a half.

There was some respite in the form of a baby running away from her mother every four minutes or so and up the middle of the church toward the altar.  My money was on that kid but she never did reach the priest.  Her horrified mother kept dashing after her.  She scooped up the baby who would then break out into peels of laughter.  This amused Dad.  And it amused me too.  Dad pointed out a beautiful little girl sitting with her father with long straight hair and a homemade quite pretty knitted dress. 

After we did the sign of peace thing that modern Roman Catholics do these days-- vigorous handshaking all around-- Dad stood up and started out of the pew onto the aisle.  I managed to stop him.  I was able to ascertain that he thought that the Mass was over.  He had forgotten whether or not Communion had happened.  [It hadn't.  His short-term memory is shot from the two dementias that he now has].

Communion happened.  He asked to follow me up.  On Easter and Christmas last he was able to follow the line of folks himself without me being ahead of him.  So he followed me.  I watched him greet the priest as he was given the wafer.  Then I watched him take a determined hold of the gold chalice and get a healthy swig of wine down before he would let go of it.  We got back to the seats alright.

Soon after it was over.  I was amused to see an altar girl in the procession along with the two altar boys.  All three kids appeared to be related and judging by height, she was the middle child.  As they walked past, I heard her say a very healthy "shut-up!" to her younger brother.  The noise in the church was such that I couldn't hear what he had said to her to garner that reaction as they were too far away.  I smiled at her saying "shut-up!" to her pesky younger brother.  I know it was Christmas Eve and all, but it was pretty cool.  I couldn't help but wonder if she too will determine that she does not wish to be Catholic anymore during her own adolescence.

After church, one of the pastoral laity assistants who was not a priest recognized my Dad and greeted him.  The fellow was quite personable and glad to see Dad in church.  Apparently, someone in the church will give Dad a ride on Sundays if he ever wants to go.  I told Dad later on that would be alright by me.  Now that I know that he wants to go, in his words, "once in awhile" I can make that happen for him either through me taking him or someone from the church coming to get him.  I suspect that ultimately as in after the first or second time he is gotten, they will ask not to.  But that is alright.  Dad has had some success even in this stage of his failing brain with making his own connections.  I am willing for him to get a ride to church from someone other than me a few times.  That the assistant and the priest have both been to Dad's supervised living adult home means that the offer wasn't made totally blind.

Dad was quite stiff and tired once I got him back to the house.  He did allow me this time to go up the stairs before him but stopped me at the door and said goodnight.



This morning, partner and I got to the house at eleven a.m. just when we said we would.  Dad looked like hell, still tired from yesterday and also complaining about a headache along the top right side of his head.  "As if someone is pulling out my hair," he said.  I pointed out that he could ask a staffer for two headache pill.  He nodded but kept forgetting to do so.  Finally, I went and found the staffer and said he would be asking.  She came to him with the medication before he was able to get himself up to do so.  Twenty minutes later, he had forgotten that he just had the two headache pills.  I reminded him of that.  It took him a few minutes to decide to believe me.

Dinner-- they have breakfast, dinner, and supper there-- was held in the usual way with four separate tables rather than one long time like was done on Thanksgiving and Christmas last.  There weren't any Christmas songs playing.  That might have been just as well.  Dad had noticed before dinner that my partner "does not hear well."  He was quite right about that.  But partner refuses to go for a hearing test because partner does not wish to be fitted with hearing aids.  Actually, quite a few of the old folks that Dad lives with seem to hear better than my partner does.  At any rate, Dad's eating rate has slowed down noticeably since even Thanksgiving.  I think probably that even though it is a sign that his Lewey Body Dementia is winning the fight over Dad's physical abilities, his slow rate may very well offer some protection against the choking that often happens with older folks.  Dad did enjoy the meal though.  I did also actually.  Quite yummy. 

After, we went upstairs to Dad's room.  I had to point out to Dad that the two bags were for relatives who will be dropping in soon to see him and not for us.  We exchanged presents.  Partner's selection pleased Dad very much and he was able to talk about it.  But he was a bit confused as to whether we were leaving it for him or he was giving it to us.  Partner went to the bathroom.  At which time, Dad told me he would hold on to the colored socks that another resident's family member had gotten him. 

These colored socks are crucial to Dad's plan.  Dad still has a plan of going back to work.  This time though, going back to work will happen "in the spring."  There is now zero recogntion that he is unable to work.  Sometimes he will admit to his brain "failing" or even to dementia; other times he insists that his forgetfulness is normal aging.  Today he admitted to neither.  And once again I was confronted with his deepest wish to have things return to at least partial normalcy.  And no, he does not wish to do volunteer work.  He wants a job in the field that he had his career in and he wants to be paid.  He did not go into what usually follows his idea that he wants to work again.  What usually follows is enough money for his own apartment, a car, and maybe even a small business loan to start-up a business back in Jersey.  I can't give him any of those things.  I can't safely make any of that happen.  Not even an apartment because he does not have the funds to pay for twenty-four hour supervision.  And he historically used to throw out any helpers that were obtained for him.

We left with plans for me to take Dad to the [family] doctor on Thursday.  Dad has never liked doctors.  For someone who hates doctors, he certainly has demanded to visit them of late.  Taking Dad to the family doc has value though.  Doc is able to convince Dad for a short time that Dad's um, "floating", bumps on his head are not brain cancer.  Maybe after the doctor visit, we can go to the nearby shoe store.  The owner of the shoe store is very good with older folks.  Dad needs sturdy shoes that fit.  His shoes are in various stages of disrepair.  With his weight loss, his shoes are now too loose, making them potentially dangerous.  

Dad has the characteristic "long lean look" of someone with Lewey Body Dementia.  Partner was able to readily identify that Dad has declined very much since visiting him last month.  I spent some time with my sadness over Dad's condition.  I know that death happens to all of us.  But some of us are dieing faster than the rest of us.  I keep hoping that Dad will die in his sleep before the real horrors set in.

sapphoq on life

Christmas Memories

My mother married her drinking partner second time around.  She was very much a functional-- but angry-- alcoholic.  Step-dad was also a functional alcoholic.  My mother dominated him though.  She told him what to do and he did it.  I went to live with my dad in my late teens because of physical abuse.

I was raised Roman Catholic but in my early teens I got curious about the other churches in the neighborhood.  On Sundays, I started secretly [I didn't tell my mother] attending their services.  On any given Sunday, it was anyone's bet whether I would show up where I was supposed to be or somewheres else.  Sometimes I skipped church altogether, stopping at an Italian bakery and then just walking clear into the next town.  Other times, I would go to the plain little Episcopalian church or to the Spanish Pentecostal one that shared space with the Presbyterians.  Eventually, I got converted and found Jesus in a very fundamentalist way.

All of this searching started in high school.  On the last day of our ninth grade religion class, we were asked what we had learned.  I said, "I learned that I didn't want to be Catholic anymore."  I had been exposed to the craziest of arguments against abortion, feminism, and why women shouldn't be priests.  So I knew what I didn't want.  I even knew a little bit of what I wanted.  I wanted a church that made sense and wasn't boring.  I also wanted one that didn't consider the life of a woman to be secondary to the life of a fetus.  Thus started the trek in and out of various churches I had mentioned earlier interspersed with periods of avid pot smoking and drinking.

There was a few kids in our high school that were Children of God, a.k.a. the Family nowadays.  I went to the commune in New York City with them at least once.  There was a gym teacher who was Christian Missionary Alliance only she spoke in tongues at the Charismatic Catholic prayer meetings on Wednesday nights down the block.  She was at odds with the Children of God kids.  The administration of the Catholic High School was at odds with her.I had another friend who was Pentecostal with a Jewish twist.  We shared an illegal bottle of Moyen David in a local park on several Saturday afternoons.  She was a lot of fun.  We poured through a Jewish catalog for young people and freely co-opted whatever we wanted to out of that.  I wound up in an Assemblies of God church and there I stayed on and off for a few years.  For several years, including after my exit from my mother's house, it was either Jesus or drugs.  I could not conceive of a life without either one.

My mother, being herself an addict of the alcoholic variety, got along with me fairly well when I was [unbeknownst to her, or at least unacknowledged by her] getting high and drunk.  She was enraged whenever I was into one of my Jesus freak [that is what it was called in those days-- we were young and turned on and joyfully proclaiming the Word of the Lord to anyone who was around, whether they wanted to listen or not-- not as a slur, but just what we young people were known as] periods.

The second to last straw was a boyfriend who was also an Aggie [Assemblies of God member].  He was twenty eight years old.  But he was very respectful of me and my age and did not so much as French kiss me.  There was no pressure to have sex.  He didn't want that.  We held hands and dated in a group.  That is to say, we attended church functions together with a group of other young Jesus Freaks who were also Pentecostal.  Sometimes after a service, a group of us went out for pizza.  There were no clandestine visits to his bedroom [he lived with his mother], no motel rooms, no getting naked in the woods, no discussions about birth control.  There was none of that.  I was probably safer with him than I would have been with boys of my own age.  My mother found out that he was twenty eight and she beat me.

Several months later, she showed up with my step-father at the Aggie church.  They were both drunk.  She dragged me out of the pew on my knees.  I had rug burns on them for several years after.  She then threw me down the church stairs.  There was no choice.  I left with them.  I was afraid that I was going to be shot.  There was a gun in the linen closet.  She was that drunk.  The church people prayed as I was being physically mauled and hauled out of there.

Once home, a long period of beating me with an umbrella started.  My mother would take her turns at it, yelling her head off while doing it.  Then she would sigh as if she was tired and instructed my step-father to take over.  "Hit her, ______", she would say wearily.  "Hit her."  Thus he earned a nickname from me for the next several years.  Jellyfish is what I called him privately.  He was spineless.  After several hours, I was allowed to retreat to my bedroom.  I was sore, beat up, and the tears were flowing.

The next morning, my dad called.  He called immediately after my mother had left for work.  [My step-father left earlier].  "Are you okay?" he said.  "I don't know."  He insisted that I come live with him.  One of the church elders had called my dad after I was yanked out of the church the night before.  No one else in that church did anything meaningful to protect me.  The pastor got his friend the police chief to type up a letter banning my mother and step-father from the town that the church was in.  But that was after I had moved and was safe at my dad's.  I'm pretty sure now that the letter with its threat of arrest was legally uninforceable.

So I went to live with my dad.  I wasn't ready to contact my mother by that Christmas, being only three months later.  But Dad insisted that I buy my mother a present.  I left the presents on the radiator in the hallway when I was sure she wasn't home.

My mother had always been funny around Christmas.  I would see my dad on Christmas day.  He would give me some really nice presents.  I would take them "home" [to my mother's house].  She would throw them out.  After a few years, my dad caught on that she was doing this.  He began asking me to leave the presents with him.  But I couldn't do that.  If I didn't bring the presents home for her to throw out, there would be hell to pay.  Christmas became a mixed holiday experience for me.  I loved my dad fiercely.  But anything that my dad did for me, my mother trampled on.  The gifts at Christmas were just one glaring example.  I learned much later that my mother's actions were indicative of a classic double blind.  Dammed if you do it, dammed if you don't.   

My mother had a fake green tree with fake snow on it.  We would decorate it and she would make cookies.  In my teens, I was allowed to have her version of a Brandy Alexander-- brandy and chocolate ice cream mixed in a very large round goblet.  My dad had an aluminum tree.  He loved Christmas and he would sing all of the Christmas carols and traditional songs.  Once I was living with him full-time, Christmas became a thing of joy.  I continued my mixture of Jesus or drugs cycles.  I did go to midnight Mass with Dad at the Roman Catholic church up the street from him.  He allowed me to do as I wish regarding what church I attended or didn't attend.  He expressed his opinion but allowed me the dignity as a late teen to make up my own mind.

People get older and the years passed.  I tried on several more religions, got clean, discarded all religions once I found that I could stay clean without a Jesus, got honest with myself about what I didn't believe in.  I came out as bisexual.  Had lovers.  Had break ups.  Fell in love.  Got married to someone who is also clean and a non-theist.  Dad got married two more times.  He came down with what we now know is Lewey Body Dementia.  His third marriage failed.  It was my turn to give him a safe place to live.

Dad is now showing signs of Alzheimers' as well as the Lewey Body Dementia which two neurodocs independently diagnosed him with.  He is in group living in a supervised adult residence.  [Not a nursing home].  Dad continues with his determination to do as much as he can for as long as he can.  His brain scan shows literal holes.  The neurodocs don't know how it is that he can still dress and shower and eat on his own.  I do know why.  It's sheer will.  Although he does not always know that his brain is failing, he continues to grapple with some really tough stuff.

The last couple of years, I took Dad to Mass at a church near his home for Christmas twice and for Easter once.  He has a harder time in crowds now but he does want to go to church for Christmas.  This year, we are going to a late afternoon Christmas Eve Mass.  The Catholic church I found for him in his community is small and intimate and friendly.  They have a choir.  [Dad and I both love music].   Tomorrow, my partner and I plan to eat Christmas dinner at Dad's house.  We've done this for several holidays now.  The tables are pushed together family-style.  The other old folks and Dad and a few other family members all sit together.  Staff take pictures and keep the food and good times flowing.  I am grateful that Dad lives in such a homey place.  It is clean and comfortable and safe and he is thriving there.

Being atheist, I celebrate whatever I want to.  Yes, we do celebrate Christmas.  I am lousy at picking out presents for people.  And horrible at wrapping them.  As we do every year, I take my partner to the mall.  Partner picks out what partner wishes for gifts.  I buy them and have them wrapped or buy prewrapped boxes.  So while there aren't any surprizes for partner, at least partner is assured of getting stuff that partner wants.  We've tried several other ways through the years and they just didn't work.  We also buy presents for our extended families.  We don't have much money and we are very careful not to overspend.  We don't do much of the charge now, pay later stuff either.  Cash is king.  We have been blessed with some little grand-nieces and grand-nephews.  I really enjoy seeing them.  Partner is in charge of their presents, because I am so abysmal at these sorts of things.  As for me, I am now equipped with an e-reader.  The e-reader enables me to read for a long period of time.  Before the e-reader, because of the traumatic brain injury eye problems and perception problems, I could not read for more than a half-hour at a time, and frequently for a lot less than that.  So my major gift this year is a gift card for the e-reader.  I love reading, and getting the e-reader last year gave me back the joy of reading that the t.b.i. had stolen.

I also celebrate the Winter Solstice.  The solstices and the equinoxes are astronomical events.  Which makes them practical, not woo-woo or new agey.  [I dislike New Age stuff].  I celebrated this weekend with the dog in the woods.  We go to the woods almost daily.  The dog is older now but she is happy there.  Both of us are.

I celebrate the festival of Lights.  My Christian friends celebrate the festival of the Light that has come into the world.  A Jehovah's Witness friend doesn't celebrate any holidays.  Some folks celebrate Chanaukah.  Some celebrate Kwanzaa.  Some celebrate various combinations of the wintertime holidays.  Some celebrate none.  Christmas started as a co-opt of the Roman holiday Saturnalia.  It was [and is] a common practice for the Holy Roman Church to co-opt pagan holidays, add some Christian, stir, and pour out a new holy day.  Thus, although folks have been celebrating various festivals of Light for centuries before what we now know as Christmas, Christmas was derived from the very pagan Saturnalia and grew into its own.

Now we have Santa Clauses.  I read that the major company that sells cola products started the American Santa Claus as a way to sell sodas to kids.  I haven't done any research on that claim yet.  So there I have to say, "I don't know."  At any rate, the lawns of houses in the United States seem full of plastic Santas and sleds and snowpeople, wooden reindeer, and flashing lights.  The stores promote Christmas shopping.  Much to my major annoyance this year, the Christmas shopping season began with Gray Thursday-- the day formerly known as Thanksgiving-- instead of Black Friday.  When I look around at all of the commercialism, I figure that Christmas has lost much of its original sacredness.  It is easy for me to celebrate life out in the woods on Solstices, Equinoxes, and pretty near every day.  Not so easy to get in touch with anything remotely holy on what Christmas has become.  This is not entirely the fault of pagans.  There are plenty of Christian households that do the presents and the decor also.  At any rate, Christmas has now become loud and abrasive.  I must prefer the quiet solitude of the woods.

I do not believe there is a war on Christmas.  Or, perhaps if there is one, this war is not solely the makings of the godless masses.  If I am in a store or out in the community, and someone says "Merry Christmas" to me, they are not saying, "You are a no good secular humanist, atheist, non-theistic bum so go to hell."  It's okay for them to say "Merry Christmas" and okay for me to respond in kind.  This is my choice.  I am an atheist.  I get to celebrate everything that I choose to celebrate.  If there is a war, let's have a war on commercialism.  Forget the war on Christmas.  I just don't see it.

[Christmas in public schools is another matter which I will not be addressing in this blog post.  The public schools with their renamed winter concerts and no prayer over the loudspeakers and no preaching and stuff like that is an entirely different situation.  As an atheist, I don't accept the "blame" for that.  There is a law or set of laws that is responsible for secularism in public schools.  I believe they are referred to as the Lemon Test:  http://russellandduenes.wordpress.com/2012/11/14/public-schools-and-the-lemon-test/
and
http://www.ehow.com/about_5285467_lemon-test-used.html
have some preliminary information on the Lemon Test and explains it far better than I can].

People saying "Happy Holidays" to each other [in non-public school settings...that question of what to say in public schools I have left to the Supreme Court at this moment] feels a bit dishonest to me.  I celebrate Christmas and Solstice.  I will wish folks either one generally.  I don't celebrate the birth of the baby Jesus because that is not Christmas for me.  Christmas is a remake of the Festival of Lights and as such is not a threat.

So to those who celebrate Christmas, I say with all sincerity, "Happy Christmas."  To everyone else I say, "I hope you had a splendid Solstice/Chanaukah" or "Happy Kwanzaa."  Or just a simple, "How are you?  I wish you well."

sapphoq on life

Dear Sister Kathleen T.

or rather:
UNdear [you aren't my]Sister Kathleen T.,

I remember.  I remember you threatening to slap me because I was not in Gym class that day.  I had a valid excuse and I wasn't doing anything wrong.  Unless you count having to take a piss as "wrong."  Except perhaps that my presence in the hallway was annoying to you.

I was a quiet kid.  Too quiet, even.  I didn't mind following the rules as long as I understood what they were.  I really even didn't mind the uniform.

You came upon me in the hall and asked me why I wasn't in gym class.  I told you.  Quietly.  Why I wasn't in gym class.
You. Said. I. Think. I. Shall. Slap. You.

You put up your hand and struck at me.  At my face.  Only you missed.  Would slapping my face have made you feel better?  Was this something your god wanted you to do to me?  Explain please.

I was a child of abuse.  I had dodged much worse than you. I whirled around and said the only thing I could think of to say:
"I'm going to tell my mother on you."  [The biology "sister" would mock me for saying that later.]  I was young and idealistic.  I knew the law said that you could not hit me.  I didn't know that the law was meaningless.  Yet.

I grew up.  Did you think I would forget?

I didn't forget.
I will not forget.
I will not forget.
I will not forget.

Threatening to slap me and even ignoring the signs that I was being abused at home is hardly anything compared to what other kids have suffered and are suffering in boarding schools and therapeutic treatment centers.  But the brain-numbing education I received at your institution turned me away from your religion by time I was a sophomore.  Good job there!

Life goes on. 
You were fairly old when this thing happened.
You are probably dead now.

No love,
sapphoq on life

Postage Stamps

Hey Dad, how are you?


I'm feeling better than yesterday.  We had a good lunch today.  I think it was chicken.  None of the Christmas cards have come back yet.



sapphoq on life: dementia-- such a wonderful drug--/headdesk.

Are You Sure: or: Monothematic Delusion

Scene:  I am visiting Dad at the assisted living place.  He has dementia.  I have made out his Christmas cards.  All he has to do is print his name.  I give Dad a notebook to use as a firm surface to write on.

me:  Here ya' go Dad. 

Dad opens the notebook and begins to sort through it.
Dad: Oh, I know I have to do something with this but I forgot what.
Dad looks in an envelope.
Dad:  Oh, that's the doctor's bill.  I'm not paying it.  Not even five bucks.  I have to take care of Christmas.  Maybe the bank will give me a small business loan.

me:  Here's the first card Dad.  It's for your nephew and his wife.

Dad:  We sent one to my sister and her family.

me:  Your nephew is grown.  So he gets his own family card now.

Dad:  Oh.
Dad picks up the pen.
Dad:  This is a nice pen.
Dad: How should I sign this one?

We go through the same process for all seven cards. 
Forty five minutes later.

me:  We're all done!  You did good.
Dad:  What's those things you have on the envelopes?
me: Stamps.  They're stamps.
Dad:  They don't look like stamps.  Are you sure?
me:  I got them from the post office Dad.  They don't say how much the postage is is all.
Dad:  They look smaller than stamps.
me: Really Dad, they are stamps.
Dad shakes his head.

Dad:  We'll see if any of the mail comes back.

        Dementia.  Such a wonderful drug.

Neurotypical Sharks, Purple Cow Teeth, and Christmas

During an uncle's wake, a cousin with the aplomb of a blown tire announced to a small group of everyone there that I am autistic.  And my first internal reaction was along the lines of "What the fruck?"  At that point in my t.b.i. recovery I was still moving awkwardly and using a cane full-time.  I already felt like a dweeb, a non-typical swimming in a sea of neurotypical sharks-- there are some similarities between the first year of my post-head trauma being and what I imagine to be the experience of some folks who have been diagnosed with Asperger's.

 [Now that the Asperger's diagnosis in the new and upcoming D.S.M. has been removed, I perceive of a riot between the Asperger's Pride folks and the folks over at Autism Squeaks.  I suspect that now people will be even more able to ignore the reality of Aspies as well as the existence of auties that have grown up from the oh so cute autistic kid phase into adults who still have autism and perhaps aren't as tractable.  It's the whole three seconds after a period thing and two seconds after other punctuation thing that I was fortunately never exposed to.  That is to say,  I can understand why some diagnosed teens and adults rebel against that sort of thing.  Just as I understand why the conversation between most N.T.s appears to be stifling and superficial and boring.  But I digress.  My shrink who knows brain injury assures me that the reason why my multi-tasking skills are pretty close to non-existent is because I am highly distractible.  Seems I can't satisfy the stupid word fixer thingy no matter how I spell that word.  So carrying onward...]

I remember being tested as a preschooler.  I even remember where I was tested and recognized the building twenty years later when I went there for a different reason.  I remember my dad remarking once that I had been tested and that "they" had told him that I was retarded.  "She's bright," my dad had retorted disgustedly, "I can see it in her eyes." He left the office dragging me along to our next adventure.  In retrospect, I'm glad it worked out that way.  Her recommendation to institutionalize me fell on deaf ears.  My first words a year later was "Merry Christmas everyone" back in the days when the winter concert was still called a Christmas concert-- actually it was a small private school that I attended (I would have been lost in a big one)-- after the rest of the class had finished singing a Christmas song.  Whether the testing person had said "autistic" or "retarded" really does not matter to me now.  She could have said one or the other I suppose.  My dad always had told me "retarded."  Now my idiot cousin was telling the congregation around her at her father's wake that I was "autistic."  Whatever.  T'was an awkward and angry moment.

During this break right here, I present to you a YouTube video which I did not make-- haven't done that yet-- but which amused me:





Back?  Okay, well.  Sharing U-Tube videos is the blogger's easy way out I suppose.  Let me think about that for a micro-second.  Nope.  Don't care if it is.

I didn't say anything back to my cousin.  After all, her father's dead body was in the room right there.  Her mother was always outspoken to the point of social awkwardness for the folks around her.  That didn't seem to bother her any.  It wasn't terribly comfortable for the rest of us.  My aunt had been diagnosed as a paranoid schizophrenic, but she showed amazing insight for her condition I've been told.  When she needed a med adjustment, she recognized this and would sign herself into the clinic for care.  She was not able to work but she had three kids (including the loudmouth that I have described to you), kept a clean and organized home (something which has totally escaped me since the t.b.i. but I was never real good at that before-- now it's worse), and had a husband (my dead uncle) who adored her.  I had figured that my aunt's super direct-ness was due to her neurological condition (uh, everything is neurology) but perhaps I was wrong.  Seems my idiotic cousin had the same trait in spades.

My dad was showing definite signs of cognitive decline back then.  The car accidents hadn't started up yet.  But he was in the condition that folks describe as "vague" that happens just a bit before someone is carted off to the doctors to find out that the something that is wrong is called dementia.  What kind of dementia is a bit of a conundrum at first and sometimes for years afterwards...ah, but I digress again.  He showed up for the wake shortly after that, towed along by his then third wife.  After less than a half hour, they left.  Another aunt said, "Oh, she keeps him from the family."  I'd known for awhile that she had done her best to keep him from me.  I hadn't known that anyone else had noticed it.  But then again, I had never asked or talked about it to any of them.

I went to see Dad today at the assisted living home.  One doc here has stubbornly insisted from the first time he seen him that Dad has Alzheimer's Disease.  The rest insist that it is indeed Lewey Body Dementia.  I hadn't seen any signs of the Alzheimer's myself until this summer when he was hesitant about stepping on a black mat at the diner.  But since then, his cognitive decline has also become more steady and noticeable.

Dad had been using toothpaste to hold up his dentures.  So I got him the right "glue."  I said to him, remember when you used to recite the Purple Cow rhyme to me?  His face lit up immediately.  "Yes!"  I recited the little rhyme to him.  "I never saw a purple cow.  I never hope to see one.  But I can tell you this right now.  I'd rather see than be one."  [Shel Silverstein I presume.  Many of the little ditties and songs my dad recited and sang to me as a child turn out to be from Shel].  "Well, the purple cow got big purple teeth," I told him.  "The tube for the glue is purple."  I could tell I had lost him at that point.  He was still chuckling over the rhyme.  At any rate, he smiled and put the denture glue in the proper place by his soaking cup.  I love my dad so much.

He kicks me out when he's had enough.  He will tell me that it's getting dark [I don't drive much at night anymore thanks to my t.b.i. induced photophobia and resultant problems with glare at night and every other time] or that my dog is getting cold in the car or that my husband wants me home or that he wants to get back to hanging with the crew.  That makes me smile.  Because I know he is enjoying having his own space and his own life separate from mine.  Today he was elected the president of the Resident Council.  Something that I figured was inevitable since his nickname is "the Mayor."  I left singing an altered rendition of an old song, "Happy Friday, Mr. President" and a promise to bring the Christmas cards on Monday for him to sign.  He wants to do this and so we do.

Now this whole Christmas thing.  I am an atheist.  If you wish me a "Merry Christmas" either because you celebrate it or because your employer tells you that is what you will say after waiting on me, that doesn't hurt my atheist sensibilities.  You aren't cursing at me or telling me to go to hell or endeavoring to take a swing at me or shooting me with your gun.  Folks who know me well and who choose to will wish me a "Happy Solstice".  One friend in recovery calls me every solstice and equinox to wish me a happy one.  I appreciate that but I am not on a campaign to get the whole world to say "Happy Holidays".  It seems almost dishonest to me.  For you to say, "Happy Holidays" if you celebrate Christmas.  People that I don't know well have started once again to say "Merry Christmas, I won't see you til after it" and hesitate.  "For crying out loud," I tell them, "It doesn't diminish me as a human being if you say 'Merry Christmas', that's fine."  If I sneeze and you say, "God bless you," I figure well you have the freedom to practice your religion or the freedom to carry on that tiny superstition that the soul leaves the body briefly when one sneezes.  Whatever.

The whole public school fiasco is a different ball of wax.  There's something called the Lemon Laws or possibly the Lemmon Laws-- not quite sure of the spelling there-- which is the legal reason why public schools are supposed to be kept secular and religious instruction left to the parents or guardians as it should be.  That too is a subject for another blog-- perhaps radical sapphoq-- if I ever get done with my investigation into the troubled teen industry.  

I've been devoting hours and hours every day to that one.  Every time I think I'm done with the first section, some more convoluted stuff surfaces.  I am both amazed and horrified.  And some more stuff surfaced tonight which I have to sign off and alert some folks to.  Now that I've zipped all over the place, I am signing off and heading out.  Ta ta folks.  Till next time.

sapphoq on life coming up for air. 

Dear Dad

Just a few more days til Thanksgiving Dad, and I don't know if you will be alive then or in what condition you will be in if you are alive.  You are dieing.  I know this.  You don't know it. Even so, you sense that something is wrong.  You express your anxiety by talking about the traveling bumps in the back of your head or the scab on your leg necessitating an amputation.  You've had the dementia for many years now Dad.  

We've got plans for Thanksgiving together Dad.  I'm to come and eat with you and your buddies at the assisted living place.  I hope you will still be here, but it's okay if you won't be.

My heart is breaking in pieces every day now.  I watch you struggle to do as much for yourself as you can.  I watch you fight for your words, your ideas, your desires.  I don't know if I am even one tenth as brave as you.

I never thought in a million years that things would end up this way.  Every minute that I spend with you is a minute that I treasure.  I am privileged to be able to spend this time with you.  And when you do die Dad, I hope you die when you are sleeping before the real misery sets in.  You've been through more than enough.

                              I will always love you.

Short Term Memory Loss

My Dad is getting worse now.  His short-term memory is going.  I took him to vote on Tuesday.  I talked with him Wednesday on the phone and I said something about Obama winning.  "He won?" he asked. 

When I saw him yesterday, he again didn't know who won.  When I reminded him that Obama won, it was like he hadn't heard that before.

Today I brought him some toothpaste.  A few minutes later, he asked me to bring him toothpaste.  I said, "Dad I brought you some today."

Dementia sucks bad.  It sucks to watch my dad deteriorate and lose bits of himself.  But he is the one who is deteriorating.  And I am losing one person.  He is losing everyone.

sapphoq on life

Dad and Voting

I took Dad to vote on Tuesday.  When he had registered, the clerk asked him if he wanted a mail-in ballot.  "No," he said, "I want to go to the polling site."  And we did.

Dad is a staunch Republican and remains so in the midst of his dementia.  He can still talk politics and very much aware of what is happening on the news.  He was disappointed when John McCain and Sarah Palin didn't win last time.  He can identify certain news commentators as ones that he has listened to.  He can also identify the issues of the day and what each candidate stands for.  And he is very open about not liking Obama.  Dad actually knows more about politics than many people who don't have dementia do.

So we went.  Dad was given the same ballot sheet and a black marker-- he declined to use the fancy machine-- and I was allowed to help him.  His fine motor is bad enough that even with the marker, he was unable to fill in the squares.  After the first one, he allowed me to do it for him.  He was able to tell me which candidates he wanted to vote for.

After Dad voted, I encouraged him to sit at a table so we could have the free cup of coffee being offered to voters.  A nice lady came over and gave us our choice of donuts from the box.  The donuts were not free, but for us they were.  

Dad's dementia is difficult for me at times.  I get worn out and frazzled.  Yet the little kindnesses of people in his community keep me going.

I am proud of my Dad for voting.  He is the only one in his adult assisted living home to even express an interest in the election and in voting.

My Dad, a true American patriot to the end!

sapphoq on life

Lunching with Iranians

Back when I was young and using-- and living in Baton Rouge-- I met a student who was studying at L.S.U.  He was from Iran and he had three Iranian roommates who were also students at L.S.U.  He invited me to a meeting of Students for a Democratic Society on campus and I went.  I didn't know that most folks considered S.D.S. to be a misnomer.  And probably wouldn't have cared if I had.  Here was something to do with someone who didn't use, didn't want to have sex with me, and didn't want my money or a ride in my car.

At that meeting, we watched the film Joe Hill.  I sang the song for several years afterward.  I had a less than basic understanding of how unions worked back then.  (Dad was a small business owner and was strongly anti-union.  He remains so to this day, even in his dementia).  The Joe Hill film inspired me.  I missed the total irony of watching that film at an S.D.S. meeting but I was happy.

My Iranian acquaintance invited me to his apartment to have lunch and to meet his roommates.  I accepted.  This was Baton Rouge and it was sometime in the spring.  It was sunny and ninety degrees  Fahrenheit outside.  The humidity was fierce, although the humidity in New Orleans made Baton Rouge feel like a desert.  At any rate, I was dressed for the weather in a pair of shorts.  The Iranian fellow asked me if I would please change "into a pair of trousers," carefully explaining that in Iran, women who wore shorts were prostitutes.  I told him that if I ever got to visit Iran, I would be sure not to wear shorts.  But we were in Baton Rouge and as for me wearing long pants in the heat, forget it.

We walked over to his apartment.  It was a small one bedroom.  The apartment itself was very clean and organized, especially considering that four male students lived in it.  The students used the dining room table to do homework and sat on the floor to eat.  I was invited to a place on the floor and we ate.  We had some soup.  I don't know what was in it but it was delicious.  That I distinctly remember.  I think we must have had something afterward, but I don't recall now what it was.  After the meal, I walked back to my apartment.

[If you were looking for a punch line or a moral or something, there isn't any.  I think often of my Iranian acquaintance and his roomies and I wonder what became of them].

sapphoq on life 

Organization

Dad was always the organized one.  He had a place for everything and everything in his home had a place.  He carefully wiped the spots out of sinks when he was done with them-- all sinks, it mattered not what they were made of.  I always knew where to find something.  Things went in logical places, in the rooms that they were being used in.  Everything in Dad's home was clean, neat, and kept up.  Cared for.  Once after Dad had brought home a bunny and then rehomed it, he replaced the carpeting.  All of the carpeting.  Because in playing with the small dog, the bunny had pooed randomly as bunnies will.  But since the poo left tiny little stains to Dad's eyes, the carpet went and new carpet was brought in.  Dad had a housekeeper who came in twice a week to dust and vacuum.  I remember her.  She was an old lady, easily eighty years old or so, but cheerful.  I am not sure if she was a thorough housekeeper.  She did tilt the pictures hanging in the living room over the stereo to show that she had indeed dusted them.

And now we both struggle with organization.  I always had, although my brain damage subsequently made my disorganization much worse.  And Dad because of his dementia.  He spends a lot of time, an hour or two daily, fixing and straightening and organizing his stuff.  "I'm getting a new system," he tells me in all seriously as he moves the clothing around in his dresser or lines up the items he needs for his nail care on top of it.  Dad insists upon putting his own clothing away after they are laundered.  He has consented to allow the housekeeper to make his bed daily and to vacuum his carpet twice a week.

sapphoq on life

Headaches

Dad has been complaining about headaches again.  I feel miserable as I can't fix it.  I can't make it go away for him.  I can't force his brain into better functioning.  He continues his spiral downward.  He hates all of it.  He has moments where he recognizes that he cannot remember well-- what he wants from the store or whether or not he's eaten lunch or what day it is.


In my mother's house, in order to get her to recognize that I was feeling physically unwell I had to burst into tears.  I taught myself how to do this.  If I told her I wasn't feeling well without the tears, I was not heard.

After I moved in with Dad, the first time I got physically sick, I burst into tears.  I was amazed to discover that I no longer had to do this in order to get medicine or treatment.

The other thing I had taught myself as a young child was a form of pain management.  I am still able to "make myself dizzy" as a way of disassociating from physical pain and then stopping the dissociation at will in order to check on my pain.  The P.C. doc was astonished to find out that I could control that process.  As an adult I was astonished to find out that my experience was not typical.  I thought "everyone" could and did make and unmake themselves dizzy as a response to physical pain.

Disassociation is not relegated to those who have some form of D.I.D.  [D.I.D. used to be called M.P.D. or multiple personality disorder].  If you've ever zoned out while reading a captivating book or driving long distances on a highway in your car, you were disassociating.

I don't think Dad zones out on his his headache pain.  He looks and feels miserable.  Over the counter headache tablets do soften his pain.  But the real problem remains.  He is having more frequent headaches now and an increase in confusion.  He doesn't call it confusion.  But he does know his brain is failing.

And so there is the problem of getting the V.A. docs to respond to his concerns and maybe work him up to make sure that the bump on the back of his head is just a bump.

sapphoq on life

Tired and Demented

Anything with the brain can tire one out.  This has certainly been my experience with my traumatic brain injury.  And it has also been Dad's experience with his Lewey Body Dementia.  He falls asleep easily in his chair when watching television.  I don't mind so much.  When he does, I sit quietly.  When he wakes up, we continue talking about politics or cars or relatives.

I love my Dad and it is sad for me to watch the spiraling nature of his cognitive and physical decline.  I remember to love him in the ways that he wants to be loved.  I cherish every moment that we have together.  And I hope for him what I hope for all of us, that he will die in his sleep one night or peacefully napping in his chair.

sapphoq on life

(The pic is of my cat on a bedspread yawning with a caption that says, "I needz mai naptiem.  Go 'way."  I took the pic, I reserve all rights to the pic, and I own the cat too.  So copyright police, you can go away now).

A Shout Out to H.L. Mencken

 "One of the most irrational of all the conventions of modern society is the one to the effect that religious opinions should be respected....That they should have this immunity is an outrage. There is nothing in religious ideas, as a class, to lift them above other ideas. On the contrary, they are always dubious and often quite silly." 

H. L. Mencken

Dude lived in Baltimore and admired Friedrich Nietzsche.

I've never lived in Baltimore (yet?) and I admire B.F. Nietsche.

Dude knew Sinclair Lewis and Theodore Dreiser.

I met Jonathan Kozol ["All the money spent for public education in America ought to come from federal taxes that are equitably distributed with adjustments only for greater or lesser costs of living in various sections of the nation and the greater educational needs of certain children."]-- yes, that Jonathan Kozol-- in Boston in January 1978.  It was after a Marshall Tucker concert.  I found his number in the phone book and he answered.  This led to him picking me up at the Little Copley and taking me to his brownstone where we spent several hours engaged in deep conversation.  This meeting was after he'd been to Cuba.  He showed me a poster from Cuba which authorities had allowed him to bring back to the United States after he explained that he needed "it to understand the Cuban people."

Dude loved Huck Finn and so did I, albeit I suspect for different reasons.

Dude wrote under various pseudonyms and so do I.

Dude's pseudonyms were never spoken of as "sock puppets" and mine certainly have been accused of being trollish in purpose.  [I neither embrace nor deny my inner troll nature in this post.]

Dude had a chemistry set at home when he was a boy.

My dad gave me one of them for Christmas one year but my mother decided that it was dangerous and threw it out.  [To my mother, almost all Christmas presents from my dad must have been somehow "dangerous" because she threw out almost all of them].

Dude like photography as a kid.

I got to know and love my cheap digital camera as an adult.

Dude was a famous writer.

I am a non-famous blogger.

Dude is one of the people I would love to have coffee with, along with Oliver Sachs [#1, sorry H.L., I hope you don't mind being #2], and Martin Millar and my paternal grandmother.

So, H.L. Mencken, here's my shout out to you.  I'm sorry that you still aren't around but I'm glad that you lived.  Thank you for being you!

sapphoq itching for a coffee before engaging in life

To Reynosa

When I was living in Baton Rouge, my friend Irene and I drove down the east coast of Texas to visit her ex-boyfriend Lee's parents.  On the way, we stopped in Freeport to see my friend Madeline's two aunts who owned a wonderful little Mexican restaurant.  We also overnighted at the Holiday Inn in Corpus Christi (in the parking lot, a sort of shelter-in-place if you will, in the car).
After our brief introduction to Corpus Christi, we continued to South Padre Island.  I was astonished to find a collection of cars and campers on the beach.  We did indeed join them, after a brief foray to the bay where we found a guy who basically lived there.
What was notable on the oceanside was a rented Winnebago (no infringement of copyright intended, but it was indeed a Winnebago) full of Minnasotian snowbirds who did not have the sense to remove themselves from the rooftop where they were baking their sunburns into a crisp.
From Lee's parents, Irene and I parked the car-- which was full of sand, pot burns, and remains of marijuana smoking and beer guzzling-- at the shoe store parking lot in McAllen.  This was where all the hippies left their cars in order to walk over the border to Reynosa on the Mexican side.  To our credit, we also had the sense to leave our blue jeans and our shorts in our duffelbags and donned sensible but hot corduroy pants for our stroll.
Once across, the sight of taxi cabs driven much as their counterpart in New York City are reassured me.  The little beggar kids who followed us imploring us to buy a wooden salad fork and spoon for our americanos dolares were a new experience for me.  We stood in the hot sun drinking a Tecate apiece.  Cervesa in Mexico was allowed to have twice the alcohol content that the equivalent in Texas was, so that was a big deal to us.  Then we went off and bought the vegetables from the street stand that Lee's parents had requested us to purchase for dinner.


http://epic.org/foia/epic-v-dhs-media-monitoring/Analyst-Desktop-Binder-REDACTED.pdf

The Hamster and the Kitten

When I was really little, like just walking, I remember stepping on a kitten's neck.  I didn't know any better.  Dad took the kitten away

and found it a safer home.  Which is exactly what he should have done.

Later on, there was a hamster.  I found him hanging from his tail off the top of his cage one morning.  "The hamster committed suicide," my mother said and laughed.

I thought that I had a duckling also.  But it turned out to be one of those fake memory things, a confabulation I think rather than a traumatic thing.  Part of it was accurate though.  I "remember" releasing the duckling (that never was) in a pond.  Dad and I used to go to that pond to feed the ducks-- just not any duckling that I ever had which I didn't.

sapphoq on life

Dear Glen

Dear Glen,

     We dated once upon a time and then you went off to war.  I told you that I would write to you.  I didn't.  When you came back, you asked why I hadn't written to you.  I lied.  I told you that I had written.  I lied even more and claimed that I had sent you cookies.

     I am sorry.  I cannot fix what I had done.  Please forgive me if you are able to.  If not, I understand.

     We don't know each other anymore.  I can't promise that I won't do that to you again.  I will endeavor not to do anything like that again to anyone.

sapphoq on life



Rain

When it rained outside and we were walking, Dad would say to me, "Don't step in the poodles."

I told Dad that today and he smiled.

sapphoq on life



Taking More Fun out of DysFUNctional

Recently, a couple of elderly relatives have started talking about the abuse that they had grown up with.  I had suspected it on and off through the years.  But truthfully, I was unprepared for the depth of the abuse they said they had experienced at the hands of their father.  My denial cushioned me against facing the spectre of abuse that runs rampant through my family.  I wasn't ready for the denial to flee quite yet.  It is an odd thing really.  This denial.  It is both life-saving and damning at the same time.

Until recently, it used to be thought that one had to go through several years of therapy in order to face the abuse (as I did).  And until recently, I thought that once someone reached their sixth or seventh or eighth decade any direct talk of abuse was not to be.  I was mistaken on both counts.  And the thing that triggered these revelationary talks?  Some guy on television a couple of decades ago talking about adult children of alcoholics.  I remain astonished.  Not grateful.  I cannot be grateful for the pain of others.  But astonished nonetheless.

If you are waiting for a punchline, a moral, or a "what I learned from this," I will offer none of these things.  Instead I will sign off now til next time.

sapphoq on life

The Woods

Barkin, A-E, five pack.

I remember first going into the woods for a day hike with my dad on a Sunday.  We walked along a woodsy path.  He taught me about the northward direction of moss growing on trees.  I felt the softness of the trail beneath my feet, tasted the warm filtered sunlight.  



sapphoq on life

Class Ring

Your name was Ralph.  You were poor, with grimy clothing yet also with a way about you that said, even to my blindness, "Look out world, I'm going somewhere."  You were in eighth grade at the public vocational school.



I was in seventh grade.  I hadn't known poverty or hunger of a physical nature.  I had many bright shiny things.  You had a class ring.


You were very proud of that ring.  It was yours, from grammar school.  Or perhaps it was your dad's.  I'm not really sure now.  We took to holding hands on the bus.  You gave me your ring.  I wore it and then lost interest.  It went the way of other bright shiny things.  I began to take a different bus.  I avoided you.


Was it a month later?  You dared to come to my front door, rang the bell.  "A boy is here for you," my mother sniffed.  I went to the door.  You asked for your ring back.  I told you then, "I threw it out."  And shut the door on you.  It wasn't until many years later when I remembered and began to understand.

sapphoq on life

Go Eat Yellow Snow

Censorship sucks.       sapphoq on life