Entries Tagged 'Alzheimer’s Disease' ↓

As former GSR of my AA homegroup I am still on the mailing list.  This means that I have received the applications for the 2010 International Convention being held in San Antonio, Texas next July.  I am going, and have only to mail my registration and book my room.  I’ll do that today.

I brought the applications to the meeting last night and made the announcement, held up the flyers, etc…Then I saw that the registration applications went into the chairperson’s notebook, which means they will never be seen again.  This makes me sick, and opens my eyes again to the apathy that surrounds me in this program.  This group is full of people with long-term sobriety who do nothing outside of coming to one meeting a week (maybe two) and leaving it at that.  How sad.  They have lost the gift of desperation and in doing so dampen the exciting fire of sobriety that I felt when I came into the rooms, and still feel at certain meetings.  They no little or nothing of the 12 Traditions (which are not suggestions, like the Steps), and to top it off, I found out last week at a business meeting that the current treasurer (15 years sober) had no idea what a prudent reserve was.  Once again, puking time is upon me.

In any case, their sobriety is not my own, and they can do what they want, but they give the impression that it is OK to just go to meetings and so forth.  They take it all for granted.  Blah, blah, blah…listen to me go.

Good news is all around me…Mom is doing much better (reading, with it, etc…) and the world still spins on its wobbly axis despite my disappointment with a bunch of whinging old ladies.  I am going to finish my thesis and photo class by the end of next week and move along in life.  This, I declare, is my goal today.

Johnnyboy

My mother has come back to ground after 5 weeks of wandering in her mind.  It can be frightening for her, and dismaying as she is sometimes aware of what is going on. The past week, however, has seen a smoothing out of the rough edges.  Most of the time she knows where she is and, thankfully, she has not forgotten who I am or her other family members.  Her condition is called ‘sundowning’ and it causes her to become disoriented in the early morning after waking and beginning around 4:30PM until about 7:30PM.  I think much of it actually has to do with light and stimulation to her eyes.  Her attitude towards this can be upsetting for her, but she seems to be taking it in stride.  In short, she knows that she is safe and loved and at home.  What a relief.

In my academic life I am up against another bureaucratic wall.  I am currently finishing my history thesis and working in a darkroom for an independent study–this you all know.  After this summer is through, I will have only 20 credits left to fulfill, all of which are electives.  I have submitted the changes to my degree plan.  One of the changes is a possible 12-credit semester in Greece next spring at The Aegean Center for the Arts on the island of Paros.  I have visited the school already and met the director, John Pack.  I would be taking Digital Photography, Figure Drawing, and The History of Photography.  That would leave only 8 credits left before graduating.  The ACotA has a credit exchange program with a huge list of colleges and universities here in the US and abroad, including several from  the same state institution I attend.  It is also accredited with the Association of American Colleges and Universities.  This seems like a no-brain-er and  it would be except for a woman named Milly Dean (not her real name). She is on the academic assessment board at my school and probably one of the reasons I had such hard time last year with my Prior Learning Assessment for culinary arts.  She says that since the Arts Center is not “regionally accredited”,  Empire State College cannot transfer the credits.  She has also denied any of the changes I have made on my degree plan.  I have finished my major; the only credits left are electives, which I am taking in the arts and photography in preparation for trying to get an MA or an MFA.

My mentor is working on this for me and I will go above Ms. Dean’s head if I need to. The worst case scenario is that I transfer all my credits to SUNY Purchase and finish my BA there.  I have been told that there are two reasons Milly Dean has it in for me (and others as well).  The first is that a creative strategy for learning does not fit into her neat little unimaginative box.  The second is that ESC receives no money if I go to Greece.  It comes down to the fact that Milly Dean and others like her have no imagination and, maybe, but only maybe, are even jealous of those who do.

It is sad to see that the world of education has been co-opted by the bean-counting idiots who sit on their fat asses and eat chocolate all day.  This is true.  I’ve seen it. They have fat asses and they eat chocolate all day.  The counting of beans is an idiomatic statement.

Mom is adjusting to the O2 scene very well.  She instinctively knows how to adjust it on her face when she needs to blow her nose and hasn’t complained about having to wear the cannula.  The new twist is her mental state.  She doesn’t think she is at home, but rather has been brought someplace else.  We have seen this before, but not at this level of insistence or depth.  It is common with dementia and Alzheimer’s patients to experience this, and it ill only progress deeper.  Last night she woke up several times and wanted to “go home”.  Soon we she will want to make telephone calls to her brother who has been dead since 1984.  Such is life.  As she progresses in her dementia new protocols are put into place to accommodate her needs.

The power went out last week during a big storm and luckily we had backup O2 for her.  This being said, it is time to have a generator installed.  I have done some investigating and a local fellow is coming over this afternoon to fit us with the correct unit.  The price is reasonable for us and the sense of security is priceless.  It is one thing to have the power go out in July, when the nights are merely unseasonably cool.  I don’t want this happening in the fall or winter and be stuck without a furnace, running water, air compressors or telephones  for any period of time.

I’m handling this pretty well.  It is heartbreaking-true.  There is nothing I can do except make sure she is safe and cared for.  The decline now will be swift, I hope, thus lessening the periods of panic and confusion running like frayed threads through her synapses. 

A few months ago a good friend in the program (who took care of both his parents and his wife as they died) told me that when she finally does die I won’t know what to do with myself.  He’s right.  I can feel it already.

I am off to the 41st New York State Convention of Alcoholics Anonymous this weekend.  I will be taking the train, thus saving me and my car a 14-hour round trip drive.  I can plug in my laptop and get some work done.

Btw…”cannula” is Latin.  It means “reed” or “tube”.  It is also where we get the word “cannoli”.

Last week my mother went to her childhood home to visit relatives.  We all knew that this would be a difficult journey for her, but it is clear that it was far more than that.  The trip down was uneventful and fun, but when she arrived she began showing signs of stress, exhaustion, and disorientation–all in the extreme.  She returned last Thursday and she was wiped out from the minute she arrived.  As a result she stayed in bed about 21 hours a day only coming out to eat.  While eating she couldn’t keep her eyes open.  On Monday, when things became worse (garbled speech, confusion, delirium, hallucinations) I took her to the hospital.

We thought the worst–a stroke, but were relieved to find nothing wrong with the CT scan.  We also thought she was dehydrated, but that was very mild and not enough to cause her symptoms.  When her O2 saturation was checked she was at 82, far lower than she should.   This was due to the progression of her CHF.  With the addition of oxygen, the numbers went up and she responded well n went back up to 95.  She came home yesterday.

The respiration people showed up right behind with a compressor for her room and several O2 tanks.  This is how it will be now.  We have turned a large corner and her life, although better, will never be the same.  It is as if we have crossed a threshold which leads to a quick decline and death.  How long that will be is up to her HP, but it will probably not be long.  I think maybe two years or so, probably less.  She is still very confused about what has happened and where she is.  There have been too many routine shifts for her to grasp and it will take a while for her to get back into any semblance of  recognition of surroundings and people.  She knows who she trusts, loves, and wants near, but for now we all have to adopt new routines.

My feelings of sadness and grief are hard to measure.  There is still a little boy inside me that wants her to wake up and be my mama again.  This, I know, will never happen.  The adult Johnnyboy has made sure that she is as comfortable and loved as she can be.  That is all I can do.  

I grab hold of the program with all my strength and remember my own powerlessness.  I turn this situation over to my HP on a minute-by-minute basis.  It gets me through these times.  As many people as I know who have traveled this road–they can only console me and let me know that they are there if I need them.  This perhaps the most private moment I have ever felt.  I know that I am not alone, but it sometimes feels so lonely.  Helpless…That’s how I feel.  There is nothing I can do about this anymore.

Johnnyboy

After leaving the US, the first news from abroad I heard was in regards to the swine flu…The thought that I might be stranded in Europe was exciting and also a little dismaying.  Anyway, no real chance of that now.  The flight to Vienna was uneventful and I found a really
great AA meeting the night that I arrived. I will be in Vienna for a few days at the end of the trip, so I’ll check out more of the recovery scene while I scope out the museums and cafes.  On the flight over I watched ‘Frost and Nixon’.  There is a great quote about Vienna…’ It’s just like Paris, but without the French! ‘

The Croatian Convention was heartfelt and small.  Only 67 AAs were there, overshadowed by the youthful boisterousness of the NA group upstairs in the hotel. Many AAs did not come because they felt that the combination of the two groups at a convention was a violation of the Traditions, which it is.  Next year the two conventions will be separate, I think, but don’t hold your breath globetrotters.

I went to Bosnia after that and am still here, currently in Sarajevo.  I will be traveling on to Belgrade on Sunday and connect with my sober/clean friends in that city.  I will be there for about a week of meetings and museums and then I am off to Greece and the Greek Convention.  I have been invited to qualify while I am there and I am very nervous about it.

My school work is going well…I am through with last semester and am currently working on the summer session while on the road.

My CBE/PLA submissions have been shot through with annoying bullets by the evaluator, and while I will not appeal the findings and take the 8 credits she is offering me, I was shocked by the tone and language she used to describe my involvement in both the process and the years I worked in the food business.  I think it is best to focus on the Now and Future instead of the Past from now on.

Johnnyboy

I have all but finished this current semester.  I have a project due for a class in dramatics which will round out the whole thing nicely.  I am directing the first scene from the Sam Shepard play ‘True West’.   I have my work assigned for the summer session during which I will write my senior capstone thesis on unification in the former Yugoslavia and be done  with that.  So far so good.

I am still waiting on the results of my CBE work for my previous career and as they have made me jump through many flaming hoops of fiery shit, I have a feeling I will get nothing for my labors.  For Christ’s sake…16 credits?  It’s not like I’m asking for a degree or anything…

I leave for the Balkans on April 27th..23 days from now I’ll be sitting in an airport waiting to fly to Vienna.  I’ll attend the AA convention in Zagreb, head to Belgrade to hang with friends for a spell, and then off to the AA convention in Greece.  This will be my fifth Greek convention and my third in Croatia.  I am hoping for nice weather.  During this time I will also be conducting interviews with Balkan locals in Serbia, Croatia and Bosnia about there lives during the Tito years.  There is nothing like field work to pump up the old thesis!

Mom is doing well and we are trying to getb her outside once in a while for some excersize now that the snow has gone away.  The current raininess doesn’t help, but there are sunny spots in our lives here in Somewheresville.

I’ll try to be more bloggish in the future, but to be honest I have another blog that is not so anonymous that I have focusing on these days. I’d show it to you but…

Johnnyboy

I spent last weekend in Portland, Maine for the NERAASA Convention.  For those who do not know, it is the Northeast Regional AA Service Assembly.  This is a working weekend about service.  By service I do not mean coffee makers or chairing meetings.  The service I am talking about is the type that gets literature to the outside world so parole officers, nurses, doctors, judges, clergy, and treatment centers know what AA is and, more important, what it is not.  It is a convention of GSRs, DCMs, Area Delegates, Trustees, and so forth.  These are the 15% who do all the work.  It is because of us that AA groups (as opposed to ‘meetings’) have a say in the affairs of AA worldwide.  What’s the difference between a meeting and group?  A group has a ‘group number’, a vote in the governing structure, and a firm connection to the program.  A meeting does not.  It is easy to become a group.  Go to the next District meeting and sign up.  Then you hold a business meeting, elect officers for the group, and proceed in the bigger world of service to the alcoholic who still suffers.

It was a great weekend and I learned a lot about the program of AA and myself.

School is moving along and I have a lot of work to do this week.  I still have to finish that damn Digital Art and Design course from last semester before April 10th…

Mom is doing brilliantly.  It seems as if the Synthroid is working very well.   Her under-active thyroid was dragging her down.  Now she has more energy during the day and all that.  I can breathe a little easier.

That’s about it for now…

Johnnyboy