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!

NEEDING To Vent!

Since Tom's diagnosis... I have read and researched till I was blue in the face.... I have tried many things suggested on how to deal with this horrible disease..... how to talk with him... how to ignore and walk away.... how to "stop... drop.. and roll" when he explodes and than vanish into thin air till he calms....... through trial and much error I figured out how to "pretty much" handle Tom.

There are no two alike so I had to figure out what works with Tom... and accept what is and let go of what was....... it's been the biggest challenge of my life. 

Now I understand from the outside looking in... it "looks like" I just spoil Tom rotten to the core.... and that there is nothing wrong with him and he is just enjoying his skate like........ and I am just ignorant  and blind to the fact that he just has me fooled........

I have been challenged by outsiders who see nothing wrong... he seems normal to them......

SO THEY..... encourage him to do the very things that I convinced him I LOVE doing  ....... so he need not worry about it but just go enjoy doing what he "feels like" doing.
It's called keeping him SAFE in my book and in others it "looks like" I spoil him.

I DO NOT want him in the kitchen... he leaves burners on... he walks away when cooking food... punches hours on the micro wave instead of minutes or seconds.... he leaves the water running in the sink and walks away when attempting to do dishes......

I don't want an air conditioner because.... he opens all the windows... to let air in when it is 90 above with 100% humidity and sleeps with two heavy blankets when its that warm...... I CAN"T Afford The Electricity To Cool The Outside......

I don't want the wood stove hooked up for obvious SAFTY reasons........ AND you earned the RIGHT to drink if you have been tagged with a disease.... doesn't work with Alzheimer's.... You give him alcohol........ you keep him till he is sober.....

BECAUSE HE CAN RUN heavy equipment doesn't mean he should..... It could turn out bad ...... in fact it just usually does.

Because he knows how to TALK TRAPPING doesn't mean he remembers how.......
IF you are going to encourage him to wonder away from our area than YOU TAKE HIM TRAPPING WITH YOU!

Because one of our girls is a hunting breed...... doesn't mean she has to hunt... maybe she just wants to be Ma Ma's Baby and is afraid of loud noises..... and doesn't want to be the recipient of a very large stick to be taught to OBEY!

My point is... if you don't want him than mind your own business and keep your opinions to yourself if you have NO HANDS ON experience with this disease.  You don't know JACK SHIT about nothing and in the end...... The Girls and I Pay for it........

AND NO he did not do well the day I left him to go berry picking.....MY DAY OFF.....
I did do it knowing there would be repercussions but he wanted so bad to show me he COULD do it....

Yes he was okay BUT the STRESS of me being gone and the FEAR of something happening to me showed up the next day.....he went down hill all day and ended in an explosion at the end...... the girls and I had to leave till he calmed down........

UnPredictable?

If you know anything about Alzheimer's you know it is unpredictable ........ It's not always a down slide or plateau .... Sometimes it goes the other way for awhile... a day.... a week.... sometimes more......... or less......

I hope not to jinx it but Tom has been SHOCKING me lately with his "old self"  which is a very warm welcome as we could laugh together over nothing........

Don't get me wrong ..... it's a hit and miss thing BUT when it's a hit....... I soak up every second.  The funny part is he doesn't seem aware of it.... ??????  He just thinks he's in a good mood and having a good day.

I had to do some business in town... I left the dishes and a mess the girls had made from the night before.... I told him I'd clean it up when I got home...... I make all trips to town in the morning because he will most times sleep till I get back.

When I got home.... to my shocking surprise... he had washed the dishes and put them away (some not in the right places) and cleaned up the main two rooms in the house.....(the girls messes.... they had shredded rope and sticks .... boredom from rainy days.)

He use to clean house because he enjoyed it..... now leaves a trail......I told him the results of my trip to town and kept it simple and factual and darn it when he went to translate what I said to his sisters.... well let's just say... it was not what came from my mouth.  ha ha......

We played cribbage yesterday and I kicked his butt three times but he played well..... during the third game I could see confusion slightly creeping in and he said he didn't want to play any more.  I could see he was pleased he remembered the game.

His new saying as of late is "your funny"....... when he isn't sure what was said..... you can see it is his eyes....... and the words are said with a child's tone of voice.... nothing I have ever heard before..... It's cute!