Heartbreaking

The house was silent except for the hockey game playing on the bedroom TV with it's volume turned down lower than usual.  It was early and Tom lay in bed not making a sound.

The lights were turned down low in the rest of the house.  I sat in a chair by a light,  fiddling with a cross word on my lap.  The girls were all laying quietly at my feet.  There was a strong sense of loss in the house.

Did somebody die?  In a sense that's what it felt like............

It was a nice day....... We were going to see 30 degrees above .  The plan was for all of us to go for a long walk in the woods, even Sarah. 

Tom took Emily and Lilly for a run so there energy level would be more like the rest of us.  Makes them easier to control when we're  a group.  I picked up the house and was waiting for a turkey to be done that I had put in earlier.

When Tom got back the rest of us were ready and excited to go.  Than the phone rang.  It was the telephone people who were working on our line on our county road.  I had an order in for DSL and asked if they could drop by and hook it up beings they were down here.

They spent most of the day trying to get it for me but it turns out I'm just out of reach with the equipment they have.  I said "that's okay.   If it were a choice of living too far out and having DSL, I'll take where I live."

While the guys were working on the lines, TOM was out and about, bugging them, seeing what they were doing....in and out, up and down the road.  I swear he had ants in his pants. LOL

At one point I was talking to my sister on the phone and the next thing we knew Tom had joined us.  He was with the telephone guys and they let him cut in.  I haven't heard Tom laugh that hard in a long time.

Myself??? It was creepy.  I already am consumed by his ever demanding presence and this kinda left me with a haunting feeling.  He's even "in" the phone.  I laughed.

THAN that evening.....Tom was laying across the bed watching hockey, while I was channel surfing in the other room.  The girls were tearing around, chasing and playing.  The usual animal house at night.  Bugging me and Tom to play with them, which we do.

The phone rang.  Tom always has the main phone so I don't have to tell him who it is while I'm saying hello and trying to tell him what they want while they are talking to me, while we are in different rooms in the house.

He hollers "It's the telephone company."  I answer..."I'll get it"  I had to go get the second phone from the other room.  Third ring and I was about to answer the phone when he answered his.

Panic stricken he yells for me to come in the bedroom.  It NEVER dawns on him  that he is able to get up and come to me.  As I came to the door he looked scared to death.  "It's a recording.  They want you to press one."  He hands me the phone.  "Do something!"  he yells frantically.

I'm try to figure out what is going on, why he is panicked, and nothing on the phone can be that big of deal.  So I pushed one as he is yelling..."push two to talk to somebody", he says...... "Geeze do something."  I listen to hear that I just agreed for them to come tomorrow to put in my DSL......

That is what he panicked over?????

I said "Tom it's no big deal"  you were there today.  You know what all took place.  You could have pushed the correct button as you listened to the message...........

The look in his eyes broke my heart.  He looked scared, confused and like I had failed him.......The one who knows, understands and protects him.... let him down in a moment in which he was lost in his mind. 

He went silent as did the rest of the house........

Exercise Begings

Yesterday we started a diet again....  Tom says the first week was getting use to eating less....I say eating different.  I didn't see no "less" going on.

It was a gorgeous day. Tom took Lilly and Emily for a run first.  Than took Maggie on the 4-wheeler to see who is logging down the road.  He seen signs the day before.......He said he parked on the road and Him and Maggie walked in.  Hence Maggie's exercise for the day.....

I thought of getting out the snow blower so I could get in on the "outside exercise"  but Tom said he'd take me down the road tomorrow.  I said, "gee that's nice of you.  I'd love to go."  He said, "yeah because I love you and you don't ever get to."  I asked about the dogs and he said they can stay home.  We won't be gone that long. lol

I have to tell you with complete honesty... It takes all I've got to not burst out laughing when he talks like this. I like to keep him going to see what else he will say.  Later if I tell him what he said or he hears me share it with someone... he smiles kind of sheepishly at me and says "sometimes I say dumb things hah?"  I say "no, I think it's funny!"

So while he was gone getting his exercise on the 4-wheeler,  the girls and I walked the paths I have all over the yard.  The girls loved it and Sarah was able to join us and keep up. 

Tom finished off the day with a walk with Emily and the tread mill after super.  Needless to say we ALL slept till dawn........ Now I call that a Good Day!

Update......

 
My last blog I talked about a pain in my A**      ummm  I mean thorn in my side causing uncalled for, emotion upheaval in our lives and as I asked God for help to catch the ball ...... he removed the thorn.  : ) 

We got an inch of snow and it was a nice day for a change.... so we all went outside to work on cleaning up the snow even though it was minimal......I snow blowed as Tom plowed of coarse.......riding on the 4-wheeler......I made a comment that I didn't mind snow blowing, (to ease any guilt he might be feeling about me doing it.  (((((((Guilty feelings bring on negative attitude.))))))  Well,  I guess there wasn't any guilty feelings going on there because he answered... "well I guess not......! look at the exercise your getting!." 

Okay,  I thought it best to drop it there and not take that conversation any further.....if you know what I mean.  

And We Have Bad Days......

For the most part, on a good day, which we have our share of, BECAUSE of the environment that I've created in the woods, specific to Tom and his level of function, mentally........... TOM is easy to get along with and I'm the issue most of the time, when there is an upset because I'll forget myself and try to engage meaningful conversation, ask his opinion about something, ask for his help or put something away (hide it?), open my mouth when he is doing something else like reading or listening to the news on TV or if I interrupt his train of thought..... That turns into a REALLY BIG TRAIN WRECK!  : (

You adjust and accept and this world becomes the norm.  THAN one person, who feels justified and righteous, about his intentions, knowingly causes havoc, in the life and mind of a defenseless person, who has no way to protect himself from the repercussions that was brought on from this ignoramus (jack ass) poor excuse of a person, let alone self proclaimed christian.  His justification...."I CAN"

The mere sight of this person brings Tom down to a whole new lower level of this disease.  Which means........ that is where he really is in the stages but can still function in a less aggressive state because of the lack of stress and demands of his present habitat if uninterrupted.

So for now I am dealing with what is left in the after math, I can only wait till this passes and pray that it does.  If not we are than entering the beginning of the next stage.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Moral of the story...... I can not do a whole lot to stop this person because he is in a position to use his job (game warden) to justify his actions...legally.  He is just not a nice person.......seemingly lacking compassion and conscience.  I am being nice!

How do I protect Tom from something like this?  I can't stop this person BUT I can ask God for help, protect Tom from the repercussions of this evil person.  I trust he will be there and he ALWAYS is.

 I can put up my glove to catch the ball to stop it from hitting Tom and seriously injuring him but I cannot stop him from throwing the ball at Tom.  God guides the ball to the glove......because without my faith in him, I'd duck (afraid of flying balls) and Tom would get struck.

I share this story because I know others that have such a person reaping havoc in their lives and feel powerless.  They have the faith but expect God to answer their prayers to REMOVE this thorn but maybe God is seeking to make us stronger people by helping us to catch the ball......not necessarily stop that person from throwing it.  Think about it.

God hath not promised skies always blue,
Flower strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.

God hath not promised we shall not know
Toil and temptation, trouble and woe;
He hath not told us we shall not bear
Many a burden, many a care.
But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.

God hath not promised smooth roads and wide,
Swift, easy travel, needing no guide;
Never a mountain rocky and steep,
Never a river turbid and deep.

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.

Annie Johnson Flint

4:00 A M Coffee Party!

40 below again this morning............ Hope we aren't going for the coldest long stretch record.  My girls are peeing ice cycles......... while on three feet.  I know "they are talented."  You have no idea!

Seems our new ritual is Mom gets up around 4:00 A M....... awaken by Tom yelling "MOM the girls have to go potty!!!!!!!!  Now he has no clue what's really going on because I have been awake and all the girls are sleeping TILL he hollers "MOM!!!!!"

I  "D R A G"  my poor old aching body across the bed to the edge where  sometimes I gracefully fall over the edge, P L O P!!!!   okay I'm on the floor......." Dang that snuck up on me!"

Tom says with an unconcerned monotone voice "are you okay?"  I say "yah!"  He always responds with "what?" and I repeat "YES!"  thinking he has no clue what's going on.

Next like clock work as I return to bed Tom asks "did they go potty?" I say "yes " out loud and finish the rest of what I have to say to myself.  Than he says  "hah?"  I reply "yes" while waiting for the next question that always follows....... "Did you pour the water in the coffee pot? "  YES!!!!!!

Now I lay awake listening to him snore for a few minutes and than he gets up, clears his throat, goes to the bathroom and get himself a cup of coffee........????  

I did join him once for his 4 o'clock coffee party but he snored between sips of coffee and puffs of smokes.......?

I get up for the day at daybreak when all four girls have come pounced on me licking my face.........Tom's hollering at me that the "girls have to go potty!"  I just laugh.  "WHATEVER!"

WELCOME "2010"

God didn't promise days without Pain, laughter without Sorrow, nor sun without Rain, but he did promise, Strength for the day, Comfort for the tears and Light for the way............. (author unkown)

"I AM WHERE GOD WANTS ME TO BE"   and  "I KNOW I CAN DO ALL THINGS THROUGH HIM!"

I start my days with No expectations.... and I know no matter what the day brings,  God is with me.  I have no fear or anxiety for I have complete trust in the Lord.  I depend on GOD for my strength, courage, wisdom, patience and guidance.....

This disease is a very long journey down a not so fun road.  Many dedicated caregivers die before the one they care for......because of the stress and them neglecting their own "needs"  due to the lack of help and support that this disease demands.....

There just is no time or way for most care givers to get the breaks, rest and time they need just for themselves.

The answers seem so simple, to those not in these shoes.  If it was so simple the odds would favor the caregiver.

I am still in the first part of this journey.  This is challenging to say the least because Tom is young and in the prime of his life.... He is NOT aware of ALL his deficits, only the obvious ......

BUT through prayers, Tom knows and accepts his diagnosis.  NOT at first.  It took a "year" to get to that point.  Many never know and or don't believe anything is wrong with them.....  THIS  has made my load lighter than some....... For that I am grateful.

Than Tom had to learn to TRUST me with his well being and welfare and happiness.....  He's always trusted my love and intentions toward him but now we are talking about a whole different thing.....

 Once again my load is lighter than others...... Through prayer TOM has learned to trust me with his every being. This  took another year to get where we are.

Alzheimer is the same but unique in every individual.  If you seen one with Alzheimer........you've seen one.

Our journey didn't start out too great till I learned to accept it for what it is, how to deal with someone with a brain that is short circuiting in different areas, not knowing from moment to moment what is shorting out and what is burnt out......

I learned you have NO CONTROL, so you give that to God and ask for strength, wisdom, patience, guidance and to take the wheel because there is no map to follow on this journey.

I pray for those who don't have God in their lives through this journey or are in denial as acceptance is key for mostly the caregiver and secondly for the patient.  If you can't accept it for what it is you are FIGHTING a LOSING BATTLE and your life is doomed to be HELL ON EARTH!

We have good days and we have bad days....but it is what it is ..... and I feel fortunate that I have my faith in GOD to see me through.

So I look forward to this new year and the challenges that lie ahead because I know I am NOT alone!  AND I hope to have many more stories to share about our life out here in the woods with our now 4 girls (dogs)......     HAPPY NEW NEW!