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.

Update....

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!"

The "Rose"

We have had some pretty hard frosts lately....... as a result the leaves are raining off the trees as the wind blows them around on the ground.... with the sun shinning and the warm temps it couldn't be a more beautiful and peaceful atmosphere........

The girls scamper and play in the yard... Sarah is bringing all the sticks she can find in the woods into the yard as Emily just helps herself to Dad's wood pile..... at the end of the day I go out and pick up there mess so tomorrow they can start anew.....

I carry a sadness in my heart that won't go away.... as Tom slowly retreats to "his own little world" happy as a lark as the woods is where he loves to be ..... he isn't aware of the WE that this disease is stealing from US and the loneliness I feel as he drifts off ........

Doing everything myself keeps me busy and the girls keep me company and GOD sends me little things to brighten my day and bring a smile to my face telling me.... you're really not alone... I am here with you......

Up & Down & Around We Go.......

The ups and downs of this disease is quite trying on one particular care giver.... Yes... me.  I get close to saying "I CAN"T DO IT ANYMORE!

Then Gods says... yes you can!   I say I don't want to.... God says you have to... I chose YOU because this is the job I readied you for.... Tom is a difficult child but he is a child of mine and I need you to see him through this.....

Yesterday I went for a walk in the woods because I had reached a point ...... one in which I needed to walk away...... Tom seen me leave... and I left the girls in the house as I really needed to be alone.... 

I returned three hours later to a hysterical TOM who had rounded up a posse to go in search of me.....

This is the conversation between my daughter and me the next morning.... texting.

U ok?....... YUP!  : )........ Tom freaked out:-§....... I know....... Its hard 2 escape 4 awhile when u r on a short chain!......... Yupppp!!!!!........ Remember when i tried 2 put dusty (cat) on a string?.......... No.. how did that turn out?.......... Gag! Choke! Gasp! Cough! The more she pulled the tighter it got. She looked epileptic. Never did that again!......... ha ha ha...Toms awake... gotta go.

My 9 year old Granddaughter called..... "Gramma are you okay?'......."I'm fine sweetie"......."where did you go?"....  just for a walk in the woods"..... "You scared Grampa really really bad.".... "I know, I didn't mean too"..... "you shouldn't do that, he was really scared."

Tom suffered ultimately for the emotional turmoil I put him through... though unintentional I feel bad.....  especially after I heard his interpretation of what took place.....  It didn't match mine.

Tom trusts me like a parent / child relationship....... To him I am a ROCK... I know all and can do anything, in his mind.   I am someone with strong sound morals.... will give my all to protect my children (him & the girls ) and he loves and trust his MOM like any small child would.   This is our emotional relationship...

In reality Tom  knows I'm his wife, the love of his life, soul mate...... but mentally he can't function as a husband, the other half of us....... so we slowly worked into this Mom / child relationship adding the girls as more kids...... this works for us.  We live in the woods and interact with others when and with whom we choose?

Tom suffers from unbearable pains that SHOOT through a specific part of his leg like lightening bolts...... every few minutes one shoots through crippling him...  After YEARS of trying to find the cause / source...... it appears it's triggered in the brain.   Is STRESS / FEAR  the trigger?

By now you should be able to put together the rest of the story....... The specifics are not important....

I just can't stop thinking about what a long, slow, destructive, life changing, cruel, unfair, tormenting, gut wrenching, heart breaking, lonely disease this is.......  am I going to make it?

The Lord Is My Shepherd......

Sunday, September 19, 2010

Well the party was over as the alien (ALZ) that invades my husband's mind and calls his body home returned...... with a vengeance.

He was MEAN and ORNERY...... I played Merry-Go-Round with people telling me.... "I'm sorry..... he's booked for a year"..... we can put you on his cancellation list but it's long and that can take a year........

THIS IS AN EMERGENCY!!!!!!!!!  CAN YOU HEAR ME NOW???????

Tom was breaking my heart even though he had nothing nice to say.... he said he hated how he felt and he was trying with all his might to control the meanness that was only escalating in him...... but he couldn't stop it... it controlled him.....

Day four of trying to get him into the over booked... one person in our community that knew what to do.... I had to give it to GOD .... I told my daughter, I sat by the phone for 4 days and got no help....... doesn't anybody out there CARE??????

My two daughters that live in the same area, took over...... By the end of the day Tom had an apt with  "The Main Doc" in NOVEMBER, who is over booked trying to handle a whole community .........  and was put on the TOP of the cancellation list and he had an apt with his regular Doc the next day, with the understanding he was a problem "child" and was to be taken in right away....... to prevent a scene like the last visit to the clinic just for blood .

NOTE.... to those I have lost in this story let me explain...... Tom has only been seeing his regular DR. since diagnosis.... "2006"  who has consulted the Psychiatrist  as far as Alzheimer meds.....

All was well till now..... He NEEDS to be evaluated as every person with ALZ is different and they all react to medications different and going out of town is NOT an option for us and all his drugs seem to have stopped working except for the last med to control anger but the dosage needed to be regulated......

THAT requires a PSYCHIATRIST! 

All went well with his regular DR. visit...  He willingly took the one med that works for him to help him behave himself...... and they took him right away as promised..... and he upped his anti-angry med till he could see THE MAIN DOC.... for evaluation.

By the time we got home the clinic had called and Tom has an apt with MR. MAIN DOC on Monday...... WE ARE ECSTATIC!!!!!!

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It has taken time.... with denial and acceptance...... Tom has totally accepted his diagnosis..... and for some reason, not all are aware, he is aware of his actions BUT says it's like someone else driving the car with him in the driver seat....."my words"

The "one" drug that is working and dosage has been increased...... has put him at peace and given him control of the wheel again......

NOW that doesn't mean he makes good choices, can reason, remember, multitask..... and the list goes on...... BUT he at least doesn't do it all with a smile on his face and laughter in his voice and he LOVES HIS MOM...... that's me

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NOW how in the world did my daughters, particularly the one I call "the nut that fell closest to the tree?????????"....  I heard she threw herself in front of the train and the train stopped!