Entries Tagged 'Alzheimer's Disease' ↓

I have discovered that if I really work the 12 Steps and frame my life within their guidance, I am much more serene, happy and successful at living than if I were to disregard them or take them granted.  It is all about my spiritual program and acting, not thinking, soberly.

My mother is very excited about my upcoming trip to Greece.  She keeps on reminding me that “your grandmother would be so proud of you” and that she is proud of me as well.  I have been able to help her these past years and still do today.  She is in much better shape than she was last year,mostly due to the introduction of the O2.  She will do fine during my absence.

My cat, on the other hand, is not so well.  She is losing her back teeth.  She has gingivitis.  This has been addressed by the vet but their response is that although we can care for our pet’s teeth, some breeds of cat have bad teeth to begin with. Poor Sweetie Pie.  Other than that she is the sweetheart with a temper that she has always been.

Off to Greece in 5 days!

Johnnyboy

It’s pouring rain outside and windy.  The temperature is around 50 degrees.  It’s January.  In two days the weatherman says the temp is supposed to drop to a high of 25.  Back to winter we go.

I am off to Greece in 36 days.  I ran through a test-pack of my carry-on camera/shoulder bag and it’s not too heavy, plus everything is well distributed.  I am bringing two film rangefinders (my Voigtlander R4M and the old Canon QL17 GIII) and my small Canon Digital Rebel XT with a 28-135mm lens and a 50mm.  The school said that it is not necessary to bring a digital camera, but if you are comfortable with a specific one, to do that.  The other option is that I bring the Beast (Canon 50D) and its lenses.  That would increase my weight considerably, so I am leaving the Beast behind.

Mom is doing very well, but is nervous about my leaving.  I am nervous as well.  I am moving into a new realm of travel and having to turn a lot over to HP while I am gone.  It is good practice for me since I should be doing that every day anyway.

My significant relationship is going well, as far as I can tell.  I like it the way it is, but I am unsure about her.  I think she wants marriage and children and that is not in the cards for me.  Today I will ask her about these things.  It is better to know than to try to be a mind-reader.

More will be revealed!

Johnnyboy

In 57 days I head back to Greece for the spring semester.  I will be there until June 1oth and then return for a lovely summer.  I have some work lined up for the summer and early fall, so I’ll be happy to do that.  I will be assisting a photographer friend with some weddings and then shooting her wedding in September.

I am taking two bags with me, as usual.  My backpack, with most of my clothes, incidentals, toilet kit, etc…and my large Domke camera bag, which will hold two cameras (film and digital), three lenses, battery chargers, batteries, paperwork for travel, and a few odds-and-ends.  The film I will buy in Greece.  I can stash it in the over-head bin.  It’s not huge, but bigger than the Timbuk2 messenger bag which I will also bring– stowed in my backpack.  It is still the best “walking around” bag I have found.

I am having issues these days regarding home care, it seems.  All the women are doing great, but I am having a tough time.  Mom has aged a great deal since last spring, and even though her mind is better and the O2 has improved her life, I want to make sure that she is in the best hands when I leave.  So I am over-micromanaging and hovering.  This is not good behavior, I know, but I cannot help it.  One of the women, at least, bugs the crap out of me and, although she and mom get along and she is a gentle, kind soul, she can’t figure out that this is a job and she needs to treat it like one.  This is not an experiment in social living or communal dynamics.  It’s our home, I’m her employer, and if she can’t deal with it, she’s gone.

I am dating lovely woman from California who is also in recovery.  We are very relaxed, there is little or no baggage, and it is fun.  That’s all you get to hear about her.  She is not blog fodder.

When I return from Greece I will have to write three short papers and submit them to my school so I can get credit for the three courses I will take in Greece.  This is a humiliating and backwards process and reminds me that I am happy that perhaps I can say ‘goodbye’ to SUNY Empire State College this summer.  Although it has improved my life, the bureaucratic bean-counters deserve little or no thanks for sitting on their rapidly widening asses and pushing virtual paperwork.  Once I receive my diploma, then I will write a letter to the ESC president and complain.

Drama, drama…

Johnnyboy

I have finished and handed in the final draft of my thesis on Yugoslavia in the 20th century.  This has been a huge endeavor and represents 5 years of study, research and travel.  It is done.  I felt good, at the end, in making some bold presumptions concerning the future of SE Europe, and that was it.  Now there is a space in my life…What’s next?  I still have to write some personal words about my goals for photography for the b/w darkroom course I am engaged in and finish the small portfolio I have started.  I can do the lab work next week and write the paper today.  Then I will have finished the semester, take the fall off, and cross my fingers over the spring semester in Greece.  I have begun thinking that even if I do not get in to the school, that I will go anyway for the time and visit the southern Mediterranean during the off season, finishing up my trip with the Greek convention.  In many ways I need a break from the former Yugoslavia and Greece and Turkey might be the ticket.

The date did not happen. I asked and she said ‘no’, but nicely.  The experience put me in an emotional tailspin that landed me on my pity-pot for a few hours.  I lost all gratitude for the above experiences as well as the whole of the past 7 years of sobriety.  I eventually snapped out of it and let it go.

Mom has bursitis in her hip. She also thinks she has been driving her car for the whole year-and-a-half she has been in bed, in the hospital, or whatever.  What a shocker for her.  ”Bullshit”, she said.  ”I can drive…I still have my licence.” “Sorry, but you cannot.”  I guess we should all be thankful that she can fight back, but that’s all he can do.  She cannot win.  She’ll wreck the car if she gets behind the wheel.  Time to keep an eye out.  She might try to make a break for it…

Johnnyboy

My paper on Yugoslavia is done.  I have handed in the final ‘first draft’ but there isn’t much to correct, in my opinion.  The bibliography will be adjusted and tacked on, but what should I call it the paper?

I have been doing a lot of old-time AA service these days: driving guys around to meetings and so forth.  there has been one kid that I have been driving to meetings.  He is, in my opinion, a real mess.  He is on 15 different medications for bi-polar, addiction, etc…and I am not sure if I would call him sober of not since one of them is a med that keeps the urge to use heroin at bay.  That’s chemically induced clean-time.  I’m glad he’s not my sponsee.  If he ever asked, I would have to say ‘No.’

Mom is doing well and her mood and memory seem to be leveling out in a good and happy space.

I have asked a woman from a nearby AA group out on a date…yet again.  This will be the third (?) attempt at dating and it is pretty low-key.  She lives in the Big City most of the week and I have asked her to be my date at a photography opening in early November.  Nothing serious, just the show, then maybe a quick bite and then I have to head back home on the train.  I am not even considering sex…well, I suppose I am, but that’s normal.  I am not expecting it, that’s for sure.

I have registered for the 2010 International AA Convention being held in San Antonio, Texas.  It will be a big deal, with about 80,000 people in attendance.  AA holds it every 5 years.  How fun!  I am thinking of driving the 4000+ mile round-trip journey, but that is far away from now.

Johnnyboy

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