Vacationing?

Tom has been on a little vacation in his mind for the past few weeks..... Unfortunately he didn't go on one of our many hunting - fishing trips.  He went back to work in Colorado where he fed a blacktop plant.

This plant put out a million ton of blacktop in one year.  Tom worked unbelievable hours and many days never got out of the loader he ran.  He was amazing at his job.  Nobody could do what this man did.  Many days I would ride in the loader with him just to see him.  He did this for ten years. 

Well that's where he went and got stuck 24/7 working at this plant.....me too.... I go where he goes and he had me working at the plant too.

Under a Dr's care we got his meds tweaked and finally got him back to our little world in the woods......

He is different now.... which is how it all goes.

BUT life goes on, we have moved on to a different normal.... I'll just have to be more creative ..... 

We are getting a dump of snow as I write so I'll be busy for a few more days... I'll be back.    Miss Me?   ; )
************************************************
1/30/11
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.

He Remembered My B-Day

I had a B-Day recently...... Usually in December Tom will mention it and try to guess between two dates which one it is...... I think it's funny because I don't care about dates... I care more about life everyday.

This year he hasn't said a word... I left it alone because I really don't care..... The day of my birthday I was bringing his morning coffee and was going to tell him it was my B-Day so he wouldn't be thrown off guard when family called to wish me a good day......

My mother was on the phone I had in my hand when I brought him his coffee in bed... He wasn't even all the way awake.....

"Here's your coffee sweetheart".....I whispered softly in his ear.... Tom opened his eyes and said... "Happy Birthday Mom!".....  I was so surprised I said "WHAT?"
He said..."Happy Birthday".......

My Mom heard this too and KNEW he had just given me the Best B-DAY present ever..... She was thrilled for me because SHE knows better than anyone else in the whole world what kind of relationship, love and happiness that Alzheimer's is stripping away from me..... We spent a lot time with her a few years back so she seen up close and personal how "WE WERE"....

Ummmm  we seen how she really was too un-be-known to anyone else.... hee hee (wink) 

Like Christmas Tom responded well to a couple of our kids stopping by to wish me a Happy Birthday but it also tickled me how they pulled it off.....

One came with stuffed animals for each of our girls.... and the other came with raw hides for the girls and candy for Tom..... : )

And like Christmas there were no repercussions later.......

If only we could stay in this place for awhile.... it's not bad from what we have been through till now.... But realistically?  It is probably the calm before the next storm.  

BUT I will not worry about what isn't and may be to come........ INSTEAD I will relish in what I have today.
***********************************************
1/15/11

Living with Alzheimer's in our life keeps me pretty busy caring for Tom and the girls... One does not realize what that requires.  Some outsiders think I just hang out  with nothing but time on my hands ...... and I say to them your welcome to walk my shoes for a day as I could use the break.

I stay focused on the positives in each and everyday..... I don't take the time to waddle in self pity as that would be just throwing precious life away..... God has given me a very special job to do and I give it my all....

I have been able to detach from what was and I am so busy with what is and the ever changing circumstances of every day that I don't have time to miss what was or what we were planning for our future.... "Our Golden Years"

I have found peace in my heart and in my soul living my life for God.  Taking care of this man who has been inflicted with this unmerciful disease..... I imagine where he is ... lost in his own mind... depending on ME to take care of his needs and keep him safe...... and when he trails back to the past I go with him..... he is not alone.... I hold his hand in past and present.

He feels and responds to my love for him and trusts me completely.  It's scary at times for him when he isn't sure what is real.... but I tell him it's okay.... where we live......  real is where and what we want it to be...... He is comforted by that as he knows where ever he is in his mind... I will be there with him.

I see in his eyes sometimes fear..... fear when he realizes he isn't who he was.... when something has happened that he is aware of that is unlike who he was.  I make light of it and we laugh.

With my attitude to enjoy what we have today and let go of the things we can not change, and stuff is stuff, it doesn't make or break our lives as we live it...... We swiftly move past the small stuff.....

I keep the atmosphere  happy, joyful, and as fun as I can.....trying to keep him stimulated without pushing him over the edge.... somedays he is just not here and seems to want to be alone...... as he works so hard to stay grounded.... those days I maintain the light atmosphere but in a quiet sort of way.....

I do get frustrated at times and could wring his neck but when I actually think about what pissed me off... it's kind of funny...... of coarse I don't react in front of him so I have time to think about how ridiculous what he said that rubbed me the wrong way, was....

Tom is  a man of few words these days but let me tell you by night it is none stop talk.... He is clear and makes total sense..... by day it's a whole different story.  lol

When he is in this dream / talking / acting out state... we can interact with each other.... he usually wakes in the middle of it and starts laughing realizing what he his doing for a second and than starts right back at it again...... I told him he has me and the girls totally entertained .... he laughs and thinks it's funny as he does not have nightmares like when he first started this journey.

Tom at this point has given up doing anything at all...... instead he sits and thinks about all the things he doesn't have and if only had them he could do this or that.....
He thinks it is lack of having certain things that keep him from doing anything at all.

Till now this disease has made our life ALL about TOM.... than I slowly became aware that it isn't ALL about him.... it's about ALL of us that are connected to him.... this disease is effecting and touching everyone that is a part of our lives in some way....

So without taking away from Tom's needs, life and security I find creative ways to still find something for myself and to stay in some way a part of the lives of others that are important to me......

That is important because my health and frame of mind directly effects Tom's care.  I haven't found a way to get respite so at times I get pretty tired and wore down....

Keep us in your prayers as we have still a long way to go..... And thanks to all who support us, stand beside us and are there to give us a helping hand when needed.

There are people who don't know us but know about us who have helped us "because they can"   to you I say "GOD BLESS!"

SLEEP TALKING?

We had such a peaceful Christmas.... it was a wonderful day for us all.  All of Our Family found a way to touch us in a personal way without disrupting the calm that had recently enveloped us......

Nothing lasts forever... this disease is ever changing - ever challenging....
 
No one person is the same as another.. the disease is as unique in everyone as people themselves are all unique.

"Just for fun?"......... Tom started to talk in his sleep.... clearly... articulate... then he added hand movements ... that wasn't entertaining enough so he started walking around acting out these dreams.....

It was a little frustrating for me when he would call the girls by name and ask them if they wanted to "go outside?" OR "are you hungry...do you want something to eat?....

The girls were getting confused by his talking ALL night and his behavior so they started sticking pretty close to me.... I was so pinned in the bed I felt like a mummy... I could not move even a toe and they were not about to move away no matter how much I squirmed.

Yes, we were seriously worried about him going outside and not waking up....... He would wake and ask if he was dreaming or was it real... sometimes he argued about them being real ...... most times I could say... "Tom your dreaming" ... and he would either answer....  "OH"  or  "no I'm not".... AND sometimes I had to ask HIM if he was dreaming or awake when he was talking to me....  lol

Our lack of sleep was draining us both..... we both could laugh about it at times but also realized the seriousness of it.

I contacted his Doctor and he thinks it might be medication related, so we are adjusting them to see if that makes a difference.

He is having less episodes now and we are all getting some sleep....

With this disease you really don't know from day to day or moment to moment what can pop out from left field....  and there is no one clear answer... it's all a guessing game and trial & error.