OOPs... Missed July!

Guess I missed July's Update.....  Probably because there isn't  much change.

At Tom's request and the encouragement of those that stay in touch with him but don't have to care for him and put up with his behavioral issues which is common and typical of this disease, have backed off on some of his behaviors meds which helped me stay safe and keep him in the realms of our 30 acres.  He feels better he says in the fact he is more alert WHEN he does get up and more energy which only puts him back on his 4-wheeler and out of the safety of our home.

I totally understand the people who love Tom don't like to see him in a calm submissive state because it is so out of character from who he was...... BUT what they do NOT get is that he IS NOT who he was.......  AT ALL.  Not even kind-a.

I know they do not realize they are putting him in danger and me.  They make excuses for his behavior not wanting to accept what is but that is not helping him or me.......

Anyway.... here is a little story that took place last evening......

Tom was out bumming around on his 4-wheeler most of the day.  He popped in now and then just to take off again to who knows where.  I don't.......

I'll take a moment here to respond to those that say I need to make him stay in the yard... do what you have to to keep him off the 4-wheeler.

Well A.... I had that problem solved peacefully with meds.  KEY word HAD!
         B.... Have you ever tried to stop a train?
         C.....Have you ever stirred up a hornets nest?
I'll leave you to ponder that.....

Back to story......

SO..... around 5:00 p.m....... Tom came in the house chuckling.  The "old couple"  down the road had some guy with a small boat pulling their pontoon boat from their place to the landing close to our place......

He was chuckling because he thought it was going to really funny to sit on the bridge and watch them struggle to get that pontoon boat loaded on the trailer.

Now the "Old Lady for some ? reason does not like Tom.  The Old Man is Tom's buddy.  The other guy with the small boat is some Good Samaritan who offered to help this Old Couple get their pontoon out of the water.

SO I asked to go watch the ordeal with him.  He was happy to have someone along to laugh with him.  (NOT MY INTENTION).....  Birds eye view from the bridge.

Soon the little boat came around the corner of the river pulling the pontoon boat into sight.  The Old Lady (respectively) was on the pontoon and the Old Man was in the small boat.....

I seen trouble arising as they were nearing the landing.... "Should we go help them?"  I asked?  "I don't know if we should or not"  was his answer.  "I think we should... it's what God would want us to do".... I replied.

He responded to that and and drove us down to the landing.  They threw Tom the line from the pontoon.... He looked confused but I figured he was okay because he only had to hang on to it.....

I pulled the small boat to shore so the men could get out..... I had to help the Old Man who was not very stead on his feet.  I grabbed hold of him to steady him as he was stepping out... teasing him that he was on his own if he fell in the river.

The Old Man went to back his truck and trailer down the ramp.  Tom continued to hold the rope not really knowing what to do.  It could have been tied to tree......

The Old Man released the rope and hook from the trailer to attach to the pontoon to pull the pontoon onto the trailer.  There it lay..... We then had Old Lady sitting on the pontoon... Tom standing there holding a rope .... the Good Samaritan in his boat, trying to pull the pontoon back into the water to line it up on the trailer....

This is where I realized Tom was not barking orders at me to help him get the pontoon lined up etc...... he was standing there NOT knowing what to do.

I jumped into action and went into the water up to my waist to hook the rope to the pontoon and releasing the one Tom was holding and then guide it over some posts on the trailer ........ The Old Man pulled ahead and the pontoon was loaded........

The reason I am telling this story is to point out how Tom did not know what to do.... if he got in trouble on the trails .... weather he got stuck or broke down.... HE WOULD NOT KNOW WHAT TO DO!!!!!!!

I think I will end here.... I think the rest is self explanatory to anyone who still has a full deck......  Tom is missing way to many cards to be out playing any more.  And I think he is out of wild cards too.

Reality Of This Disease Hit's Hard

All winter Tom sat at the table staring out the window at the GARAGE TO BE.  He wondered every day if it would really happen.  ( I have read that negative thoughts "it's not going to happen..... they won't show up... it won't be ready.... why does everything happen to me..... etc ARE par for the coarse of this disease.)

In March Tom called around for estimates for the supplies it would take to build his "dream garage".   He decided on where he would buy his lumber and we went and paid for it in full even though he knew it would a few months before construction could begin.

He kept telling everybody that him and I could build it ourselves.  There was a day when we could have but not now.  His TWIN BROTHER Teddy offered to put it up.  He so generously put his life aside to come put up the garage for Tom.

Our friend and neighbor did the dirt work ...... People who knew and loved Tom could see him slip sliding away and this was a dramatic attempt to get his engine restarted.

Living with Tom I knew it was the disease doing what it does best and there just isn't anyway in hell to stop it. 

As the project got off the ground Teddy and others are seeing that there is NO WAY to cut through the fog and destruction this horrific disease has caused in his brain.  It isn't depression, it isn't boredom, it isn't lack of resources...... it is the disease.

It's called apathy
noun
 indifference, lack of interest, lack of enthusiasm, lack of concern, unconcern, uninterestedness, unresponsiveness, impassivity, dispassion, lethargy, languor, ennui; rare acedia.

That is just one part of his brain that has deteriorated to the point of no return.

I see and feel the pain others are feeling as they see his obvious losses.  I put it in the same place I put all my pain from the losses I have experienced through all this.  One day a time will come and I will be able to mourn freely of the love (TOM) I had and lost.  I know and trust that God will see me through the after as he is seeing me through the now of one of the most horrific diseases that exist.

Today I rarely see the love I once seen in his eyes for me..... now I see a dead stare as he has been watching me.... It gives you a creepy eerie feeling as the eyes that are watching your every move are cold and dark.  "Why are you staring at me?"  I'll ask.  He looks away but does not answer.  Soon I notice he is doing it again.

Last night was a heart breaking realization to me as it was the 7th and final game for the Stanley Cup....... I pay for the biggest pkg. of Dish Network so Tom can get hockey games and I payed extra for the NHL channel......the last thing he still held an interest in......

Last night he lay on the bed to watch the game and every time I went to check on him he was sleeping?

Hopeless and Helpless is what I feel today.... an over all sadness as I watch his brother put shingles on the roof of the garage he is building for his brother...... his excitement and enthusiasm is gone.

I'm sure he is asking himself why is he doing this.... Tom won't be out here anyway......

The Disease Is Taking It's Toll....

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.

February ?

Here we are.. end of February already.  It hasn't been too bad as Tom's meds are working well for him now.

Sometimes he thinks the medications ARE his problem and says he is going to quit taking them...... I reply with "It's your choice but if it were me and I was doing so well taking the meds... I'm not sure I would want to chance what would happen if I quit."

He says if he gets bad after stopping them he will just go back on them... I replied with..."That's all good BUT from what I have read... anyone stopping their meds and then going back on ..... don't go back to where they where but rather... they have declined more and can not get it back.........

I see him searching for the person he was and what he use to do..... He blames the pills on his lack of ambition and energy..... his tiredness...... and weight gain.  It's probably true in part BUT without the medications he wouldn't be sitting here thinking about what all he has lost.

Tom is anxious for spring..... he thinks there will be more to do?  We are planning on putting up a small garage but that can't begin till the road limits are lifted..... in April.     

He believes he is going to get a BIG DOZER in here and take out all my trees because he is tired of mowing around them......  IF you read the main blog you know he doesn't mow anything...... he just wants to get in a dozer and MOVE some big stuff...... He was born with operating BIG equipment in his blood..... He misses it!

On warmer days he has been down in the woods watching the loggers and talking to a few people he knows.....He sometimes takes one of the older Girls (Mag or Lilly) as they miss the old times too.

Tom sleeps till noon these days which is nice for me.... It seems to be apart of his new self.... He doesn't like the fact he is so tired and can sleep so much but that once again HIM knowing the way he WAS and isn't NOW.

Tom has his wants and needs well taken care of... I see to that first..... if he is happy.. everybody is happy.  It's just the way it is in this world with this disease. 

The hardest thing to accept and adapt to is their selfish self centered-ness which wasn't there when it came to me till this disease took over.....

Point being .... me and the millions other spouses  in my shoes... struggle to find me time.... somedays just being able to step outside the door and take in a breath of fresh air without hearing...."MOM??? WHERE ARE YOU?"

I am kept pretty busy just chasing after Tom and the Girls..... but there are times I find some free time on my hands and that is when I play with my projects..... I don't like to be idle for long......

Time on your hands just gives you time to think about all you are missing out on in the rest of the world..... and it serves no good purpose to even go there.... As a spousal caregiver to this disease it's best to make the best of the world you are confined too........ in hopes that you come out at the end still in tack to go on with your life.

It will be fun to see what March brings ....... We got so much snow this winter I expect spring to be plenty muddy so I am already working on "HOW TO KEEP THE MUD OUTSIDE"   ....... Now with Tom and the 4 girls.... that is a big challenge!   lol

January Melt Down

It started out ...the first part of January.... Tom begin to talk in his sleep.  It was kinda cute... he' d laugh and giggle... they were happy dreams.

Well eventually the dreams became more a part of reality to him as he started hand movements, which in turn escalated to sleep walking.  Nope it didn't stop there.

He ended up not knowing what was real or dream.  He went back to work in Colorado where he had a very demanding job..... he told me it was as real as can be.  He knew he was in his house and was running this black top plant with all the old guys right here in our house.  Tom didn't sleep for near a week.  Let me leave it there...

 It was the most bizarre thing I have ever experienced.  Where I live the choices are few.  None of them good.  So our one Dr. who deals with the meds for dementia people agreed to "try" to get Tom back.

He only agreed after talking to me and found I was very realistic about this disease, had a good support system and founded me very grounded.

He told me I have done an excellent job with caring for Tom and added quality to his life beyond what he has seen.  He also noted Tom would have been institutionalized a long time ago if It weren't for me........ I knew that but was really nice hearing those words from his lips.

We have Tom back now.... not quite the same but better than I had expected. 

So life goes on..... not too much different than it was..... And we have only God to thank for bringing Tom back to where he is now.

And I hold the deepest respect and gratitude for the Dr. who thought Tom was worth a try.....

I am finding that people with this disease are disposable....... how sad!  No you can't STOP or CURE this disease BUT they can be given QUALITY of life..... not all but that's where everybody gets thrown into one bucket. 

The first response I got when I asked for help was..... he isn't going to get any better.... you can't stop this disease from doing what it wants..... maybe it's time to just put him away...... why are you doing all this for this one man.

I also have to mention, speaking of gratitude....... I have found that the most unexpected of people from our community have reached out with a helping hand..... This day and age you don't see that like the old days where everybody looked out for there neighbor.

Tom was one of those guys..... always lending a helping hand.... he would give his last dollar, last cigarette and the shirt off his back....... Something to ponder.