Sunday, July 24, 2011

Not a complaint, just a report.

I don't want you to think that I am complaining, I am not.  But, as many of you know, one of the purposes of this blog is to record what I am going through.  Why, to inform my family and others, to learn from others affected by LBD, and to solicit feedback from care givers and LBD patients. 

Recently, I had my son and his family visit for two weeks.  Now, it was not the entire family for two weeks straight, but more of a depot of family travel.  Both grandsons spent a week in a Christian summer camp.  My daughter in law went to another state to search for their new home, and my son traveled for work for a few days.  So, the company I had was as high as four and as little as one.   Just the same, it was company. Why do I say it that way, because company disrupts my routine.  Now, that is not totally a bad thing.  Sometimes, changing my routine is good for me.  It takes me out of mu comfort zone and makes me adjust.  But, company also brings with it the feeling, for me, of being invaded!  You know, like Sherman's march to the sea!  If you don't know about that disaster, blame Yankee, liberal, public education.  In any case, as much as I like to see family and friends, 2 weeks may be too much.  Another issue with this visit is the going and coming of the visitors.  Again, I am routine driven, and the changing of the numbers of people staying in my home was difficult for me.  Trying to keep track of who is where upset me and my son noticed that.  My wife did make a calender of the people shifts and that helped.  She is the master of organization.

Just the same, I learned or confirmed some things.  One is, I withdraw into myself when I feel invaded.  This is interesting because I used to be a type "A" extrovert who drew energy from crowds.   Second, I see my bedroom as my safe zone.  Sort of a safe room from the invasion.  I would retreat into my room for naps, quiet time, or early bed when I was overwhelmed.  Third, most people still don't know how to deal with me.  My son said that he noticed a degradation in my condition, and he made adjustments in the demands he placed on me.  He realizes that I am not the man I once was.  Yet, he still lives in denial and expects me to be able to be as active as I once was.  One editorial note here;  I still feel that people don't think I am sick and they won't until I am drooling on my shirt and going to the bathroom in my pants!  I still look too normal to the outsider.  Trust me, try looking at life from inside my head!  Things are distorted from my point of view.   Another thing I noticed is that outsiders expect life in my home to equal what they have in their home.  For instance, noise, especially at night, causes me to react negatively.  My wife and I had made accommodations so that the television volume can be kept low while allowing her to hear it.  However, others in the room cannot.  Company has the unreasonable expectation that they should be able to hear the television at the same volume they can at home.  At least, that is unreasonable to me.  Noise of any kind is a problem for me!  Finally, because of my LBD, I am more routine driven than ever.  Everything MUST be in it's place, neat, clean, tidy.  Anything less agitates me.  I must be able to find things immediately or I feel out of control.  Of course, when you have company, things get moved, shifted, and rearranged.  This is a problem for this LBD patient.  One other issue that has become a problem, and it was amplified during this period.  I MUST know where my wife is at all times!  When I come back from taking the garbage out or walking the dog, if my wife is not where I can see her, I call out and locate her.  Then I go see if she is really where she said she was.  Why, she is my security.  If I know where she is, my world is right.  This may become a problem for her down the line.

As I have written before, I truly believe I am entering the middle innings of this disease.  And I know, from research and experience already, that these innings will not be near as easy as the first few.  I know that I am facing the heavy hitters on the LBD team!

Again, I am reporting and recording, NOT complaining.  So, don't be offended, just learn from the experience.  I really enjoyed the visit and I did tell my son that shorter visits may be necessary in the future.  But for now, bring on the visitors, as long as they understand my issues and quirks.    All in all, we all survived the invasion, and maybe, we learned from it. 

1 comment:

  1. I understand exactly what you mean about noise levels and needing routine. I am dealing with both issues myself. Like you, I think I am starting to slow head into the mid range as I am noticing more areas in which I am declining. Thankfully, it has been a very slow slide for me (since I was put on Exelon).

    Unfortunately, in our home, I am the logical planner person, the one responsible for creating the schedules to make sure everything gets done. Thankfully we rarely ever have company so that 99% of the time things in our home are very quiet (we don't even have TV) and thus I can still (as long as I have had rest) balance the checkbook and keep notes on the calendar of what needs to be followed up / followed through on.