Repetition

     Dad has been repeating himself for awhile now. Housemate's mum has just started. For a few months, she would play catch-up with conversations. A few minutes after a group of us was done discussing something, she would bring up the same thing using some of the same words. Within the last month, she has started repeating a question or a sentence several times within five minutes. Then she would act surprised that she'd already told us.

     An example:
          "My sister called me. She said she fell and sprained an ankle."
     This would be discussed. A few minutes later:
          "My sister called me. She said she fell and sprained an ankle."
     And a few more minutes later:
          "My sister called me. She said she fell and sprained an ankle."



     My dad and housemate's mum have never really cared for each other. I could imagine a conversation between the two of them.

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"


     The verdict is not in on housemate's mum yet. But the eerie repetition sounds strikingly familiar to me.

     It is not the long-term memory that suffers in dementia. It is the short-term memory, followed by an inability to create new memories. Thus, many folks with some form of dementia can tell you about their childhood but not remember what they had for breakfast.


     Dad told me the other day that soon he will not be able to talk at all anymore. His expressive aphasia has certainly gotten worse in my unprofessional unasked for opinion.

     
     Dad did not prepare me for his dementia. I suppose dementia is something that is subject to lots and lots of denial aided and abetted by any lesions that happen upon the left side of the brain.

     Dementia sucks. Don't you doubt that for a minute.

sapphoq on life

Doctor, Doctor

We are somewhere near the West End.  We are nowhere.  We are traveling towards something undefined.  We are running away from all we have ever known.  We had watched the crashing planes, the buildings blow.  We shiver.  Is that what brought us to this twisted place?

It had started.  Twelve years ago, I think.  More than ten and less than fifteen.  I've been told more than once that I have no sense of time or distance.  I know that isn't so.  When I am away from clocks I can guess the time to within ten minutes of your watch.  Especially if we are in the woods.  I don't know if I always could do that.  But I can do that now.  Now is the arbitrary division between "before my m.v.a./brain damage/t.b.i." and after.  Distance is something I can feel.  It is not my blindness if my mate is puffing after only three-quarters of a mile.

Face-blind.  I am face-blind.  I roll those words around on my tongue feeling their textures like pockmarks or a scar.  I tell people I am face-blind so they do not startle when I don't recognize them in the supermarket or the restaurant or if they get a new hat.  They startle anyway.  Silly people.  A few people don't know what those two words mean-- face-blind-- and a few who do know have reacted with something akin to surprise.  You?  Yes.  Like everything else, I hide it too well.  Passing is in my bones.  And it ought not to be.  Society is not compassionate to those it judges as "Other."  We all wear masks.  I wear mine with pride.

But this is not about me.  This is about you.  Us.  Another trip to the neurology clinic.  You are abnormally quiet in the car, breaking the silence to point out the clean snow along the side of the road.  I point out the frost choking the trees.  The ducks in the river are a blur to you.  You miss the red-tail hawk completely.  But I see him.  And also the blackbirds fanning in a mating dance over there in the swamp which tells me spring is coming early this year.

The hospital rises above mid-town, a mute testament to those who have served our country and to those who continue to be slaughtered in the name of an unforgiveable peace.  I let you off in the front.  You are having difficulty extracting yourself from the cloth seat and rotting floorboards.  You push.  You get your hips centered over your feet.  You stagger to the entrance.

I drive to the parking lot.  It is more crowded than I've ever seen it.  I am very tired.  I circle the lot three, four times.  The singular parking space is a leftover, violated from all sides by large shiny cars.  No room for the rust-bucket.  The mechanic told me last week that the car will get me through the winter-- maybe-- but it will be completely rusted from the bottom by spring.  I wanted to ask him if he could just weld another car's bottom onto my car's mid-section.  I don't ask.  I am back in the parking lot and I want to cry.  It is too early for tears.

Back to the front of the hospital, I spot a boy.  Boy because the fuzz under his mouth is barely hair.  Boy because I've gotten older.  "Hey, come here!" I yell.  He does.  "My dad is in there alone and he has dementia.  Take the car."  He asks if I will be back soon.  "Sorry, I can't.  He has appointments."  The boy uses a cheap blue ball-point pen to scribble something onto the ivory ticket stub with the red numbers.  Deftly, he separates it into two portions-- no, three-- places one under my windshield wiper, and gives one to me.  Later I will find the third wrapped around my keyring.

I go inside to find my dad standing under a heater with another vet.  Dad is talking in spite of his headache.  The vet is listening.  Dad is like that.  He always has been.  Making connections with random strangers is easy for him, even in the midst of his brain failure.  Dad says goodbye to his new companion and we stagger to the elevators.  Someone else holds one for us and safely installed in a sea of faces smiling through pain, we go up. 

After checking in, we wait an hour in the waiting room.  A smiling woman collects my dad to take his vitals [They are excellent, she says to me in triumph] and then we wait a bit more.  The couple next to us demonstrates their restlessness by striding up and down the hallway every ten minutes or so.  Dad admits to his.  I don't.  I am concentrating on not gagging because someone left the woman's room door open.  Noxious, hideously pink fumes escape from it.  I give up.  I go in to wash my hands and then carefully adjust the door so it is open at a fifteen degree angle and not forty five.  It makes a difference to me.  I am no longer fighting waves of vomitus from the stink.

The doctor comes.  We follow her down a very very very long hall.  Dad, who also used to be able to walk as far as I can, struggles with the distance.  He lifts his shoes up carefully so he doesn't trip on the linoleum floor which is built up with dull old wax.  We are installed in a little white room, just like all of the other little white rooms here.  Let the interrogation begin.

Dad declares that he fell out of bed a few days ago.  I haven't heard this story before.  Now his headache is along the top of his head.  A few minutes later it is the left side.  I suspect this traveling headache to be an ataque de nerviosas but the neurodoc doesn't.  She orders one or two bedrails, some ointment, and a head scan.  Today for the head scan.  "We must rule out internal bleeding," she explains.  I know that.  Around eight years ago, I also was sent for a head scan 'today' in order to rule out the same thing.  "After lunch," I say.  She quietly writes the order to double his dementia medicine.  His short-term memory loss is really starting to show.  Dad is with it today.  "Yes," he tells her, "I do repeat myself sometimes."  "No," he clarifies, "it is not the colors of the rugs that give me trouble.  It's the textures.  Sometimes they trip me up."  Scratch Alzheimer's off the list again.  I breathe in quiet relief.  I hadn't realized that I was holding my breath.

We have lunch in the bowels of the hospital.  Dad used to enjoy their hotdogs, rice and beans, or a hamburger.  Now he only wants a biscuit and some rootbeer.  This  is the second time we've had lunch here that he says he isn't hungry.  Is that he is worried about spending [my] money?  Or ashamed of the deterioration of his fine motor skills?  My dad who taught me how to eat in a restaurant!  Or is it the mysterious headache and bumps which shift here and there, left to right, up and down?  Next time I will take him to the diner down the road.  The diner at least has a selection of pastries.  If nothing else, dad will enjoy those.

After lunch, we dutifully report to the radiology department.  I tell Dad several times where we are.  Ra-di-ol-o-gy, he repeats himself.  He remembers the receptionist.  I don't.  I've never seen her before in my life.  This is the world of the face-blind.  I don't mind.  I've learned how to pass.  Dad goes off willingly with the radiologist, one whose face he also remembers.  I sit and pass the time in the waiting room.

Dad comes back and reaches for his coat.  "One more stop," I tell him.  I hate having to do this because I know he still has his headache plus he is now tired from roaming the halls of the V.A.  We go up another floor and the signs point us in the direction of prostetics.  Bed rails are in prostetics, we had been informed by both the neurodoc and the receptionist there.  Actually, they aren't.  The prostetics lady carefully explains to me that neurology will send down a consult.  And then the bedrails will be delivered by someone who will set them up.  "So one day someone and the bedrails will show up?"  I ask.  "Yes."  Times like these, I wish my disability was visible.  But it is not.

I cart Dad off to the elevators one last time.  He has a mystery appointment.  Someone called the assisted living home the other day and insisted that Dad also has to go to ___________ .  The only thing I have is the room number.  It turns out to be a study.  Dad had signed up for the study eighteen months ago and then steadfastly refused to do anything else about it.  But the lady behind the desk was very warm and friendly.  Dad understood her explanations and signed willingly.  He went off into the next room with her to have a blood sample drawn-- protected by H.I.P.P.A. and all the other bastardized initials courtesy of our lovely, cough, politicians-- and came out smiling but unsteady on his feet.  I jawed random things about dementia at her officemate who was quite willing to listen while waiting for Dad and his newest companion.  My own brain damage [it is a traumatic brain injury but I've recently taken to calling it "brain damage" because I am tired of living a sanitized life] is threatening a typhoon of fatigue but I stand my ground.  A couple more hours and I will be home.  Then I can give in.  But now, I must be here.  Totally and completely.

The study lady is sunny and warm.  She tells Dad about her own kids and her dog.  She does not talk about a husband.  Neither one of us asks.  We both know about divorces and affairs and beatings hidden by whitewashed walls.  The socialization is good for dementia.  I remember several docs saying that.  So I let Dad socialize and I socialize too.  I don't have dementia as far as I know at the moment.  I don't really understand idle talk.  But here we are not chattering into the wind.  We are making fragile memories.  The docs will say we are strengthening bonds or stimulating our brains or whatever.  I am by nature a hermit preferring my own company and the occasional company of other hermits.  But I put up with the vast influxes of people on clinic days because I have to.  And becuase it is good for Dad.  Dad allows the study lady to help him with his coat.  She hugs him and she hugs me and she makes sure we get on the elevator.  It is a bank of elevators behind the usual set.  But I am able to follow the arrows to the lobby once we get off.  Face-blind yes, but good with distance and direction and time-sensing.

A different boy, a man really, pulls out number sixty-four off the hooks and strives off to retrieve the rust bucket.  He leaves it in the middle of the circle, engine running and both doors open.  But even here in mid-town there is no danger of any thief being desperate enough to steal my dying car.  Dad folds himself in.  I climb in and gulp down some diet soda.  "You want some?" I ask.  He doesn't.  Rarely does anyone say yes to soda left in my car.  I don't know why.

Dad does not want to go to any stores or have coffee on the way home.  He does not mention wanting to stop at a car place for a job application.  [I am relieved.  Just the other day he was insisting upon doing this].  He does not want me to get him something for his headache.  [He has refused my offer of this all day.  I will learn to carry some with me along with the ever-present box of tissues for his phlegm and runny nose].  I see another red-tail hawk on the way back, some Canada geese sprinting up from the river, more blackbirds dancing.  I don't know what Dad sees.  He admits to being tired but then says, "I didn't want to go today but I am glad now that we went."  I understand.  At the house, his home that he shares with other old folks and some dedicated staffers, he heaves himself out of the car and waits for my hug.  "I love you, Dad," I say and I give him the neurology clinic papers.  He sets off for the stairs and the front porch.  He opens one door, staggers into the vestibule, closes the door.  I set off for home then and the tears finally come in the silence.


sapphoq on life

Doctor, Doctor

Appointment is at 1:15.
I arrive at 12:35.  The office is 20 minutes away.

Dad: (coming out of dining room):  I have to wash my hands.
Me:  Okay, Dad.  I'll wait down here for you.

Dementia has its' own timetable.  Dad no longer understands why he should have to show up anywhere at any given time.  Fortunately, the doctor and the doctor's office help all understand this.  Various housemates of Dad float by and we greet each other.



Dad:  (at 12:58).  I'm ready.  You go out first and start the car.  (translation: I don't need your help walking down the stairs today).

I start the car.  I watch Dad walk down the stairs.  I help Dad into the car, straighten out the seatbelt.  Dad has one brown glove and one black glove with him.

Dad:  (at 1:05)  Why are we going to the doctor?  Which one?
Me:  You were complaining about shooting pains in your leg near your scab.  And burning.
Dad:  Okay.  (looks around vaguely).
(translation: I have no idea what you just said but I'll ride along and see where we end up).



In doctor's office at 1:25.  The staff see him arrive and check him in as I am parking the car.


Doc:  Your scab is healing.  Everything is okay.  The cellulitis did not come back.
Dad:  Doc, is my leg going to fall off ?
Doc:  Your leg is firmly attached.  You are going to be alright.
Dad:  But my ankles are different colors, see?
Doc:  (inspects ankles, straightens out one of Dad's socks for him)  Your ankles are that way because of your age.


Me: (out in the hallway with the doctor)  Sorry Doc.  He said he was having shooting pains and burning.
Doc:  I'd rather have you bring him in and it be nothing than you miss something that he does need medical attention for.


Dad and I go out for coffee at the favorite local diner.  This is something that we enjoy doing together.  Dad orders coffee.  I order hot chocolate.  We split an English muffin.  Dad comes back from the mens' room and is able to tell the manager that the sink water in there was too hot.


We start the drive back to Dad's home.
Dad:  My leg didn't hurt in the doctor's office.  Now it is burning and has shooting pains.


sapphoq on life: And I even had a question about which side of the family donated a genetic propensity toward anxiety to me???

Dementia is hell.  Dementia is painful.  Dementia tears families apart.  Dementia has torn our family apart.  I am losing one person.  Dad is losing everyone.  Dad was always there for me and now it is my turn to be there for him.  I feel very fortunate and honored that I can be a comfort to Dad in the evening of his life. 

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