Saturday, September 6, 2014

Comments from readers

I received a comment from a person who said that I gave her husband's actions words, or something similar.  That is part of my goal with this blog.  Another  goal is to use what I am going through to help other understand what their loved one's are dealing with.  Some of us are not too adept at discussing our feelings.  I suffer from that also, when it comes to m wife!  I am reticent to tell her what hurts or upsets me.  Yes, she knows many of the issues that upset me.  But, still, I say little!  I choose to suffer in silence for the most part.

The truth is, more and more, I stay quiet about the effects of LBD on my mental abilities.  I am more open about the physical issues.  And no, not because they are easy to spot.  My constipation issues are not easy to spot!  At least until they turn into diarrhea issues!  But, this issue over the costs of future care is one I will not discuss.

Look, I feel like a burden to my wife.  I am not able to do many things I once did.  I am negatively impacted by this disease mental and physically.  I am overwhelmed to the point of tears much of the time.  Just the fact that I get in the right side of the car instead of the driver's side is difficult for me.  Then, she has to deal with me jumping around in the car, screaming she is too close to the car in front, when we are still ten feet away!!    Remember, my depth perception is getting bad.

Look folks, LBD, unlike any other dementia, negatively impacts all of the brain.  Not just memory!  For instance, I am sitting here sweating because my autonomic thermostat is screwed up by LBD.  But wait, I know  will be cold in 15 minutes.  It is like I am going through menopause!

Your loved ones are quiet abut they suffering because if they talk about it, they feel it will further diminish their position in life.  For instance, my wife's position that we must move to the CCRC because of my disease.  YES!!!  She is right.  But, I don't need to hear that from her!  It hurts me to face the fact that I am the reason we are going to be tapping the retirement accounts before we are 70!  This is almost as frustrating as someone downgrading our suffering and symptoms by saying: I have the same issue, but mine is much worse than yours!  Or, you don't look or act sick!  Are you sure you have LBD?!!

Now, you may understand why we choose to just be quiet.   We know our issues.  We deal with them.

Another awakening this evening.  I found out, I am eligible for The Veteran's Aid and Attendance  payments because my doctor's have certified that I cannot live alone and I am incapable of managing my own prescription drugs!!  Now, we have too much money in our retirement accounts right now.  But that will change soon.

Just the same, this was quite a shock to me!   It is much like when OPM approved my disability retirement.  When I received the letter from OPM, my reply was; "I MUST be sick!"  Everyday, I learn just how sick I am.

1 comment:

  1. Hi Silverfox! I can't say that I know how you suffer but I understand that it is a terrible disease and very scary to think that soon you will be a burden when you use to be dependable. Did you ever think of getting some tools to help you to be more independent?