Hear me!!

When I began to notice something was off with Leon, about 6 years ago, I said nothing. I made excuses for him. It started out small, those little things that for people who were not around him alot would not notice. He seemed fine, but it was those little things that kept nagging me when I couldn't sleep at night, thinking, "Has it struck Leon? Or, is it just me?"

Then, his walk suddenly changed. Most would call it a "limp". But, he still seemed "normal" to the outside world. As the "limp" became worse, I started my internet research. That's how I "diagnosed" him. I just knew deep in my heart and soul that's what it was.

I had voiced my concern to some. It was brushed off, there was noting wrong with him. As usual, I did nothing to stand up for what I believed to be Dementia. Maybe they too did not want to believe it. I don't know.

When we finally got our appointment with his Neurologist, I told the Dr that I thought it was Dementia. I had narrowed it down to Lewey Body Dementia or Familial Frontal Lobe Dementia. The Dr said that it was hard to diagnose and they would start the testing. This was in January of 2010. In April 2010 after test after test, we went back for a consultation with one of the Specialists. After they delivered the bad news, it was late in the afternoon, we were walking out of the lobby, when our primary neurologist ran out to the lobby and called us in his office. As we sat down, he look straight at me and said, "My God, you were right".

Why didn't anyone listen to me in the months before diagnosis? Did they honestly think I was making all this up? It bothers me to this day.

What people don't see is this:
Leon "talks" to people in his sleep, carries on full conversations.
Leon panics when the house phone rings. Sounds funny, but if you saw it, well, it's pathetic.
Leon chokes in his sleep.
Leon asks several times each day what day it is.
Leon cannot walk without holding on to furniture or walls now when at home.
Leon leaves lights, water, TV on, forgets to close doors, forgets to close cabinets.
Leon can't distinguish the freezer from the frig.
Leon can barely operate the microwave, always asks for my help.

Made my point? But, in the dead of night, when I can't sleep because he is "talking" or choking, I think back to when I needed someone to lean on, scared to death that he got what the family called, "the curse", thinking it was all in my head, and I feel alone.

So, if someone ever comes to you with fears that their loved one is desperately ill, don't treat it as if they don't know what they're talking about. Give them the support and strength they need to face it head on. Be there when they need to talk. As I'm going through this and now know how hard it is on the surviving spouse, lend a hand or a voice or just let them know you are in their thoughts. Trust me, we as survivors of a terminally ill spouse need it. We need love too.