Month: July 2009

Goings on at home, i.e. The New Protocol…

Johnnyboy

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”.

A confusing journey and home for more changes…

Johnnyboy

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