Time Keeps On Ticking.........

Days go by.... one at a time - but to Tom it's all a blur.  To him April was cold & snowy & wet & he is bored...... can't wait to start building a garage.  And so he waits...... staring out the window...... his eyes are blank..... I ask him a question.... I get no response.....he stares straight ahead but sees and hears nothing......

As the disease progresses and we go where we have never been before....... those who are oblivious to the disease question .... what I am doing to him. 

I have gone through the pain of losing my soul mate, best friend, partner in all things.... yet caring for the person who resides in his body only to get a glimpse now and then of who he once was but never to feel the connection we had when we were one.

To be called MOM by the man who took care of me and to be treated as such with the expectations a child has of a parent. To deal with the rage that was, and the words that spewed from his mouth reach deep into my soul... ripping my heart to pieces.

Now finally we have found a peaceful place to dwell with the help of meds that are being monitored closely by his doctors.....

Is it the meds I am asked that make him the way he is now? 


 ARE YOU KIDDING ME?

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5/1/11

My body has taken it's toll this past winter... I guess there comes a time in your life when you just have to give up some of the things your younger body could do....

My Mom always said... "the mind is willing but the flesh becomes  weak"...... Myself I say... "the old gray mare she ain't what she use to be.......

No matter the saying I am realizing I need help...... I am seeking the medical attention I need to get myself put back the best it can be but my days of super women are over.... 

Watching my Mom choke on that pill years ago I prepared myself for the inevitable and am taking it like a champ.......  But it isn't stopping me from finding other avenues to still do all I can and enjoy life to the fullest....... when one door closes another one opens for those who seek.......

With Tom in his "own" world and sometimes on his "own" planet... I am trying to move on... move forward.   I'm not sure how.... but I do keep an open eye for opportunities to venture out beyond the gate of  "Tom's World"  as long as he is happy, content and safe.......

I find it hard to take joy in the things we shared...... especially with him right here and him being oblivious to what is ......... He took a big downward spiral in January and I am still trying to adjust to where that left him....... and trying to get those close to Tom to accept where he is........

Most caregivers would take offense to the questions I am asked but I don't feel any anger.... only compassion as I know they are not accusing me but just trying to grasp their minds around something as bazaar as this disease.....  I struggle with it and I am living with it.

The hardest thing to see and accept is how this disease took Tom's "ambition.... get up & go.... his drive.... his want to."  He even asked the Dr. if he could give him a pill to give him his ambition back.....  That was heart breaking......

Now he doesn't carry a conversation.... people say they run out of things to talk about because he just sits there....... if the phone rings at 2:00 in the afternoon and he is still in bed he will say "I just got in from a ride in the woods."  or if someone asks him what he did today... he will mention everything he can remember that I did or someone said they did...... hence "He sounds okay to me"

Tom sleeps till noon or later..... he hallucinates... talks to people that aren't there...... does things (motions) with his hands like he is doing something.... stares out the window for hours...

He is a shell of who he use to be....... Last night the neighbors dropped by for a few minutes...... She asked  "don't you ever get bored or lonely out here?"  I told her "bored????? NO.... lonely???? Yes......

I seen Tom hear and react to that...... guess he was listening..... later he asked me who I get lonely for.  I smiled softly and looked him in the eyes.... "you" I said.  He turned his head and went back to his blank stare.

A CRASH In The Night

I've mentioned before that Tom talks in his sleep off and on all night.... It is more on then off ...... point being his mind is quit active with his dreams.....

You get use to all the talking and only sit straight up when he hollers your name loud and clear..... same with the girls.... they are just use to it....... they have always slept cuddled to me and I've just adapted to sleeping like a mummy.

So we are all doing what we call our version of sleeping.  It was around 2:30 AM...... Tom is only mumbling, the girls were all tucked in tight around me and I was laying there wondering if I had fallen asleep yet.......

Suddenly out of the dead silence? there was a very loud crash....... Tom said  "what was that?"  "I don't know.... the girls are all right here".......  I couldn't move as they had me pinned in tight and they didn't budge at the noise.

"I broke my ash tray"  Tom said while I was struggling to get out of my mummy wrap.   I said  "you what?"  It's a big hard plastic ash tray screwed to his night stand so he can't knock it to the floor at night.  "I broke my ash tray".... he repeated.

I was out of my mummy wrap now trying to navigate the bed across dogs and Tom's legs..... as I was trying to climb over Tom who is making all these noises like he just broke a million dollar vase.

I turn on the light on his night stand to see no evidence that an ash tray sat there except for a screw and two small pieces of the ash tray...... He some how shattered it into many pieces....... the rest of it and the butts were ????  On the floor I guess.

I brought him a different ash tray and got him all tucked back in...... let the girls out to go potty and returned to the bed to find me a blanket and a spot to claim as my own...... soon I was all tucked in tight by the girls and they all went back to sleep.....

April Fools?

April 1st came & went without an April Fools joke.  I didn't have the heart to confuse him more than he does to himself........

Besides... that day for some reason he asked when our anniversary was and how many years.... he has been obsessing about it ever since.  "That's so cool!"  & "I think that's NEAT!"  has been his words of choice to express how it makes him feel these days......

Personally I like the words..... "WOW" and "it seems like only yesterday"..... "my how time flies when your with the one that you love"...... His reply to that is.... " yah and your stuck with me forever......."     lol 

 He means it in a good way......as I always tease him that I better be careful or he will find someone to replace me...... and I don't want to lose my job.  "Yah right" he replies to that and we laugh together.

There are times he is aware how hard it is on me and sometimes he is aware of how much I do..... but I don't think he realizes I do EVERYTHING!  But that's okay......  in the over picture ... it really doesn't matter.

Tom's happy these days which makes the rest of our world happy.... We are looking forward to the snow melting .... which is taking it's good sweet time.....

We are expecting 8" as we speak...... must be our belated April Fools joke.....  ; )