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!

Good Day...Gone Bad

The day Sarah ate the rat poison (May 16 th blog) was a good day gone bad........ Even though Sarah was just fine after the fact....Tom couldn't come out of the spin it put him in.

He was terrified beyond words...... He loves his girls more than his own life.  The words...."she will be fine"...... gave him only a moments peace but not lasting....

He was up and down like a yo-yo... (emotionally).  His energy was going to be fixated on something but I wasn't sure what...... I kept a vigilant eye on him not knowing what he would do.

He ended up going off on how he hates the brush piles out by the county road..... He was going to burn them all.........

I handled "him" the way "I know" will calm him the fastest...... and I was able to keep him to two "small" piles and I was able to get the word out to a forester as to what was taking place.....(just in case)...... who knew Tom.... the area and the brush piles.

He finally calmed.... sitting on a five gallon bucket......watching the "camp fire" burn.

"Let's go home Mom!........ I'm tired."

These brush piles are on the very edge of the woods and some are in the woods.....
If it took off there would be no stopping it.......

There was a burning ban before the rain we just got.  I don't know if it is lifted and it still requires a burning permit and than you usually can't start burning till seven at night.....

So it was a little stressful to say the least........ But all was well .... in our woods.... as the sun went down that evening.......  

The Little Things

I guess it's the "little" things that make me stop and realize ........ this is real.... this is really happening.....

When I met Tom... it was the "little" things that meant the most to me ...... and made him different than anyone else.

The "little" things have been hitting me like a rock...... Taking my heart and stomping on it..... I've been talking about the obvious... I've accepted what is and going to be so I can take care of him to the best of my ability.....

but these little things are causing me some pain......

The significance of the Flowers (May 7th blog) he picked and gave to me....... for those who didn't understand.

Tom has become "The Center Of The Universe"....... though Sarah competes for the title also........... lol.  The youngest child in the family and sometimes the first..... adopt this attitude as very young children........

I guess you could say Tom had lot's of practice as he was the Sun,The Moon & The Stars to his Dad.

When I met him I was that to him.....and have been "ALL" of that and more to him...... till this disease took over his brain.

BUT now..... to help those who knew Tom but not "US" ....... this has NOTHING to do with a learned behavior... "he always was"  behavior......

THIS is the disease (Alzheimer's) taking over his brain and it's functions. 

I was making a trip to town.  Tom was still in bed as it was early.  I was waiting for the coffee to finish brewing so I could take a to-go-ey cup with.  I TOLD Tom that is what I waiting for........ he had already reaped the rewards of the first pot and planned on going back to sleep.

"MOM..." he yells from the bed room.  "That's good enough... just pour me a cup out of what's there so you can go"............ "DEAD SILENCE" as I caught my breath...... "MOM?"......... "Okay honey!"...... I brought him coffee and left.

Tom is on his diet kick again...." Burger & Beans & Tomatoes & Hot Chili Peppers"...... (taste?== Alz.)

"Mom you don't have to eat this... You make whatever you want to eat and just don't worry about me"  he tells me...... I said..."No problem....fine with me"  He made a big batch so he could just warm a bowl as he wanted. (I watched  inconspicuously to make sure of what he was putting in it etc......he's not allowed in the kitchen)

Next day I cooked up some grub for me and the girls..... Tom came in from outside.  "Mom?.... what are you cooking?"  .......... Some burger and veggies to put over rice."  I answered thinking he was just curious what was on "my" menu.

He looked confused and asked "what's wrong with the "chili" I made?"......... I'm not eating that .... it's too hot."  I replied.  "No but I planned on eating my chili for super".....   "I know....."  Now I'm confused......... "I'm making this for me and the girls...." I clarify.     "OHHH!" he says sounding relieved.  "I thought you were cooking that for ME."

Just a couple examples of a daily thing........

SO now you see....... the significance of him picking flowers for me.......And what it meant to me?

Tom is not aware of this behavior.... in his mind he loves me as much as the day we met and tells me so all the time... and I know he does and always will...... so he sees nothing has changed....... in his mind.