April 4th.... Easter?

Sunday is Easter......Eleven years ago on Easter Sunday Tom and I took our wedding vows...

Each year following he could only remember our anniversary was Easter..... My first clue something was wrong as he never forgot a date or details of any event.

Well this year he will be right.....
*************************************************

4/5/10 

Easter Weekend was better than I dared to hope for...... I EXPECTED nothing therefore feel BLESSED ...........

Tom who is unstable and totally unpredictable was BETTER than I dared to hope for......... I got to spend some time with my Mom..... with my three granddaughters I haven't seen for a really long time....... and of coarse there mother : ) ...... my son.... and my oldest daughter, her husband and 6 month old baby Oliver......

It was a short time BUT it was CHERISHED time...time most people take for granted.... like time is theirs... to waste or use the way they want...... nobody..... even I did not realize "time" is a gift.   and I was blessed with that gift this Easter week end.

I see more and more how God had my life planned out...... I'm glad I listened...... When we were looking for land to build on....... this was the LAST area we were interested in.  Circumstances brought us to this land....... near my sister and her husband........ the reason I am able to "spend time" my family at all.

Tom gave it a shot on Saturday.... he worked all week on himself to give me this.... Than Sunday would be all ours....... Our Anniversary.  My gift to him was to not ask for any more time than Saturday......

You must understand how much Tom LOVES all these people and they love him and miss him also....... This disease touches "everyone" in a personal way.

All I asked for was to spend time with my new grandson....he is now 6 months old.  His Mom and Dad came up mostly for that reason....It's a 5 hour drive......

Tom loved the baby.... they didn't arrive till 2 pm..... and were not spending the night with us as we all know that would be way beyond Tom's capability to handle that.

Basically Tom's brain mis -translated what was being said and everyone left.  It was a plan we had in place so no hurt feelings and total understanding that it's the disease.....

That is why I am writing this.  NOT to discredit Tom or for sympathy but to educate those fortunate not to be touched by this disease and or may face it in the future.

Hopefully I can bring insight into what it is really like for us.

Yes "US" ........ Us is Tom.. Me... and anyone that loves us and wants to share their lives with us..... Alzheimer's  steals it away from all of us. 

My 8 year old granddaughter asked... "Where is Grampa?"..... " He's at home honey".... "Is he okay by himself? "...... "For a little while"...... "Is he in a bad mood?".....  "Sometimes"..... "When he gets in a good mood and feeling better can I come spend the night?.... I really miss you Grammma."

Thanks to Tom's sister and husband... we had a wonderful Easter dinner... the two of us and our girls (dogs)......  later Tom was feeling really good and told me to go for an hour or two to go see my family who were all gathered at my sisters.......

To me...Tom gave the greatest gift.... he gets really scared when I'm not there.... even when he is having a good day/moment ..... it's worse when he isn't.  Than he even needs to know where I am in our small house......

I think the fear comes from the fact that he depends on me to be the part of him he is losing.... the more he loses... the more he needs me and the fear of something happening to me is terrifying to him.....he always says he would be doomed if something happened to me...... that must be a pretty scary feeling.

Granny's Visit

Granny came to visit....... what a spit fire, silver haired ol' lady she is.... We've spent  many a days and nights with her a few years back before Tom declined to where he wanted only to be home......

If laughter is good for the soul.... we had some pretty healthy souls then because we lived....we laughed...we ate and played cards till the day was done.....

Through answered prayer........Tom had a wonderful day .... he appeared from the bedroom as the Tom from back then....... For the first time in what seems forever Tom slept all night too.......

Granny was here for only a short time.... but her visit sparked old memories for Tom and we reminisced and laughed into the night...... he also was here for only a short time........

The Beast Has Calmed...

This disease and the behavior issues that go with it can be very trying on the caregiver.....spouse.....me.  

Obsessions are not fun.....his is now in a quiet place..... hopefully for awhile....One never knows as it can start in again at any given time....all that was won in the first go around is long forgotten and you start anew.....

Tom actually slept all night and "no coffee" ??????  He woke at three and I let the girls out....He asked me to start the coffee....and said soon he must take his pill.

I climbed back into bed and just agreed with him......He woke me at seven to tell me he never got up for coffee and he had went back to sleep.  I asked if he took his pill and he said yes you gave it to me.

I got him a cup of coffee...his pill he didn't take..... and let the girls out.....again!

He went right back to sleep.........???

A few of  "my people"  have stopped in to see me  "us" and how it's going.... They seen Tom's sudden anger. ......... Not directed at them ..... It took them by surprise and I think it scared them some what..... I told them that wasn't nothing.  That doesn't even phase me.    You should see the full blown version.....That's like an erupting volcano with lava spewing everywhere and you have no where to run.......

But his new meds have simmered him way down so hopefully we won't have to deal with the volcano episode again for awhile....."never" .....would be good for me but one never knows and all you can do is stay on guard and have a plan in place.........

The Black Beaver

When Tom took me to see his trap sets...he showed me two... the one where the beaver scared him and a set down by the neighbors creek.

They looked like some good sets as he had one in each the in and out runways of the beaver houses........Not that I know anything about trapping but really,  I don't see how they could escape?

This morning he took me with as he was sure he had one.....We went to the neighbors creek where he seen the black beaver sitting on the ice.....

I pushed him off in the canoe so he could get to the other side of the creek.....

 You could see he had one in the trap when we got there.

 By golly.... gosh..... darn.... he had the black beaver in his trap.

 He was so happy.  They are unusual and in all his years he has never seen one let alone get one.

He called Bob the taxidermist friend who bear guides down here in the fall......"What's it going to cost me to get this tanned?.....  what?..... your kidding me?"

Turns out he'll do it for nothing in exchange for Tom helping him with the baiting this fall......

Between you and me?  That's Bob's plan for keeping Tom from disturbing his hunters this fall who pay a lot of $$ to get a bear in a short time.......

For the past two years .......Tom has been disturbing the hunts...... forgetting they are there, as he is out running around in the woods at that time of year.

Tom almost dropped a log on a hunter last year not knowing he was right there sitting in a blind only a few feet from him......LOL.
*************************************************

Seems like Tom is simmering down or I am adjusting to the change?  I think he is accepting and adjusting too....... It's hard to tell.  What he knows and accepts one day or moment is forgotten the next.

What I do know is he is obsessed with trapping..... He has no clue about not having $$ for everything he wants....He just wants it and if I don't give or get it for him he thinks I'm being mean to him....(child mentality?)

He thinks I know everything and can do anything....... I was with recently while he set a trap.... I have NO CLUE what he was doing..... he was fumbling like he didn't have a clue either..... He started yelling at me ???????

Later we discussed how hard it is to trap.....and how I won't get him all the stuff he needs..... on and on and on..........I listened and agreed to everything he said.. I'm mean...I'm bad..... shame on me for being such a mean MOM.....

Than I got to talk..... he was surprised .....shocked even... to find out that I don't know anything about trapping... He really thought I knew everything and I was just being mean......He says.."well that explains it...I'm sorry... but I thought you knew everything"

He was even surprised to find out that I don't  know EVERYTHING ?????  So I explained how I like to go with to WATCH and TAKE PICTURES but I don't want to help set traps because it's too hard for me.  That's a big guys job!  He so agreed.  

It's still touch and go as we continue to adjust his meds and adjust to the change......

It's almost funny when he has a light bulb moment........a glimpse of the real world before he fades back.

Setting Traps ?

Last night was the usual......sleep till 3:00 AM and than start his coffee party.... This time he came to bed after getting a cup of coffee  "MOM... I'm wide awake.".......   "Go to sleep!"...........  "I took my pill"..... "what pill?"......  "the one I'm suppose to take when I wake up!".......  "Your new one?"......  "yah" ....... "what time is it?"......  "3:00 and I remembered I was suppose to take it...."

"ahhh.... no not till at least 6:00"...... "I took it at 3:00 yesterday morning.".....  "NOPE  it was 6:00.....Go to sleep...it's not going to kill you".......  "Now I'm wide awake and if you won't talk to me I'm getting up"......"okay lets talk"......  "zzzzzzzzz"....  "???????"...... Now I'm wide awake!

This Too Shall Pass?

So Tom was up and out setting traps (?) by 9:00.....I see his new traps in the back of the 4-wheeler and they are still there when he gets home.....? from setting traps.....I'm not sure how that works.  LOL

I run the vac through the house real quick while he is gone because I want to go clean up the yard today if Tom doesn't have other plans for me.......

Darn it....he was back in less than an hour.  He come belly laughing through the door.  "I have the ultimate funny story to tell you!" he says still laughing. 

I pull out a chair for him to sit on as he didn't seem to have a clue about what he was doing.....he just wanted to tell his story.....

It seems he went down the bank on the river 

 and was stomping around in the water on the edge to see if he could find the beavers runway as there is a beaver house in the bank.

He was straddling the runway when all of a sudden a beaver popped up between his feet and slapped his tail and took off......  The back side of Tom was all wet from the beaver slapping his tail..... Tom said "I almost had a heart attack it scared me so bad"......  I checked to see if he was only wet on his back side......I'm afraid if it were me the front would be wet too. lol

So he left again to set traps........ this time coming back to tell me he was setting a trap down by the neighbors and when he turned around there was a big black beaver sitting on the ice watching him......

I was invited to go for a ride and see where he put these traps.  He asked me to take my camera in case we see beaver.  Hence the pictures.

Tom's Doctor Appointment

The last few mornings were touch and go...... Tom was waking up with a meanness in him.....each morning being a little worse.

I emailed the Dr. ahead of time for his appointment today.  While at the clinic Tom sneered and made fun of people.....threatened to leave a few times and than he was serious and was going to leave.

So I went to the front desk and alerted them we have an Alz. patient ready to make his escape.  They laughed like he wasn't the first and got him in a room.......

There I felt a little closed in with this attitudey  guy...... I tried cracking jokes and that only pissed him off worse.   He sat and told me all the reasons he didn't like me.  I t was hard not to laugh at this guy who was in this cracker box of a room with me.....

The Dr. finally appeared ........ what a lovely sight to behold....... We went through Tom's meds and questions were asked....and answered.  Most everything going over Toms head.... I never know what ideas he will leave the room with as his perception of what was said.

His risperdal was upped and I sang "Glory Hallelujah!!!!"  LOL

"GET ME HOME!!!!"  was all he had to say when we left.  Later I heard him tell his sister his version of what the Dr. said.

He loves his Dr.  which helps and he walked away with that "he needed to take all his prescribed pills and not worry about all the side effects they list on the internet because most of that isn't true.  He even showed us his little computer thing and it didn't show any side effects...... and the Dr. said he was in A-ONE shape!

If that's what he got out of the appointment...it works for me.  I won't have to crush and hide his pills in his food than...... : )

Tom still thinks he IS going camping and trapping by himself in unknown territory.....

THE VERY WORST SCENARIO ......... I go with him........and baby it's cold outside!

Another Road Trip......

Went on a road trip ......again........ yesterday.... looking for beaver dams/houses.

 It was a beautiful spring day....nice day for a ride in the woods..... March has been unusually warm so the snow is almost gone and the creeks are running.

 We searched out new territory....and the more we traveled it.... the more he liked it and he decided this was where he was going to trap.    "Yep I can set camp here. "

You can drop me off with my 4-wheeler, tent... a few cans of beans and dinty moore, loaf of bread, 5 gals of water, coffee,coffee pot and my little one burner.  You can pick me up in a week."

We drove this road for most of the day.  It's a big logging area, some hunting shacks, 30 miles from home....... pretty isolated.

 We let the girls out to run and they played in a water hole for awhile. 

 Tom threw a stick for them.....two or three times.  We didn't know if Sarah would like the water like the other three but she didn't hesitate to go in with the rest.  

 When we got home Tom started rounding up the things he needed for this trapping excursion.  A cot from one person, a trailer from another...someone to pull the trailer with the 4-wheeler to drop him off.

OR maybe Travis could just come and slap one on the van real quick....trailer hitch that is.  No mind to the fact he is a single father with 3 little kids and a job....probably has a full plate of his own.

His traps he ordered with his trapping money from his furs last fall will be here today...... I asked if he had to dye them.  He said yes and he needed some dye.

I also don't think he added gas at $ 2.94 a gal and that it is turning seasonally cold this week end with snow.  OH I forgot.  He was leaving this Friday.... just a small part of this equation I left out.......

Did I mention cell phones don't work in this area...we don't have one anyway as we can't afford it on limited income......tracking devices don't work either as it is too densely wooded.

This morning he was cold in bed and said..."boy I'm glad I'm here with you because it would be really cold out there this morning climbing out of a tent.  Maybe I better stay home."  I said "that's a good idea."

Now you would think it would end there.  NOPE!

My OOPS!

Oh Dear..... we had a bit of a crisis last night....

I always set our Mr. Coffee pot up the night before to make coffee.  This is a different pot from what we had for years.  Recently the Bunn bit the dust and we were blessed with a Mr. Coffee.

So when Tom wakes in the middle of the night and wants to have a coffee party he just has to push the "on" button...... if he can't find the "on" button I figure he can hit all the buttons till the coffee starts to brew....no harm done.

I figure I have all my bases covered...Right?  Apparently NOT last night.  I forgot (YES FORGOT) to empty the old coffee from the pot.  OOPS!!!

"MOM.....you did something wrong.... there is coffee all over the place"...... I hear panic in his voice.
 

This is 3:00 AM....."Oh just wipe it up with what ever you can find....I'll clean it up in the morning." I holler back not sounding alarmed.   I'm so tired.....I don't remember the last time I slept a whole night with out  interruptions.

"Mom.... it's still running over"..... Now he sounds annoyed.  "It will quit soon.  Just wipe up what you can and don't worry about it."  and let me sleep I think to myself.

He comes back to bed with his coffee..... "Must of forgot to empty the pot last night huh?"   He loves it when I screw up!  I lay silent for a while than I piped up....

"Maybe this is where they got the saying my cup runeth over...." he burst out laughing and said "more like my pot runeth over..... all over!"  LOL

Cutting Firewood : )

At the crack of dawn Toms been flying out of bed excited to go out and cut more fire wood for his stove in his shack.....We have been having some beautiful 40's temps and sunshine........

Before he leaves for the woods he gets a fire going in his stove and asks me to keep and eye on it and not let it go out......He leaves the door ajar so the girls can run in and out......

 He makes about three trips a day.... I stacked all I could on the deck and the rest is in a pile to be stacked when the snow is gone.......

I bring out a thermos of coffee as that's the main staple in a shack.....and a radio to listen to the games..... baseball has started.......I see a bed for him in the very near future (from someone who cares).......

Trapping is out of his mind for now as it will have to wait till the river opens....  : )  So for now he just runs around telling everyone he feels "HAPPY"  hence he named his new pill "HAPPY"  He calls his Zoloft his "SPAZOID PILL"

BUT Tom never ceases to make me laugh.......He was talking to his brother yesterday on the phone..... He was telling him how nice his shack is and how it's fixed up just the way he wants it......"It's so nice that I don't think I'm going to skin any beaver in there now.  That is what I had originally planned to do.... I just can't...it's to nice"

 ????????? Did I just hear that right????? THE BEAVER are not the issue here because he has to actually catch one first before we have to worry about skinning it......

The trap line and all the beaver he has caught is just stories........now and then he puts out some traps and then the next day pulls them.....????? and he has been known to bring a beaver home now and than.....

Okay back to his comment to his brother...."ummm Tom?"  I quietly approach him. "what?" he answers.  "You won't skin a beaver in your shack BUT think nothing of skinning it in our house on our kitchen table?"   and of coarse I burst out laughing.....

He thought about it for a second and than started laughing too........as did his brother when he relayed what I said.  Later he said.... "I say some pretty silly things some times don't  I "..........

Yes you do and that one was really funny.......and we laughed together.
 

"Grampa's Shack"

The sun had set and dark had settled in....the stars were out but not adding any light to the darkness.  The girls started making a ruckus.... I looked out the window and barely made out a truck and figures of people.......

I turn on the out side light......it's dim against the darkness but I recognize my daughter and her boy friend.  The were unloading something....it was a little wood stove for "Grampa's Shack."

Tom stepped outside to see what was going on....... in the darkness he sees Sandy.......but still confused about what was going on..... "We brought you a wood stove for your shack," she tells him.  "Oh my goodness" he says with excitement in his voice....... You could tell he could hardly believe it was true.

I think it was back in 2004 ....... Tom wanted to build a "little shack"  He spent the most significant part of his life in shacks with his Dad....."a logger" and they also had the "hunting shacks".......

He didn't think it possible. I said anything is possible but it depends on how bad you want it because only you can make it happen.....
 

 So "WE" built this little shack...... When we were done he sat down on the deck and wiped the sweat from his brow and said......"Now I'm Home"

Those words were said with such passion I got a chill.  I will never forget that moment and those words ......and unbeknown to me years later those words would carry a significant meaning  as Tom digresses into the world from which he came.....

These past years this shack just sat there..... it took on storage items after time..... after all he didn't use it........?

But I've been listening to what he tells others about his shack..."these days" along with his "trapping stories"......... it was simple and doable.

 So yesterday we threw the storage out and put in the wood stove.......by evening there was a warm fire crackling in the stove......

I could see through the small window in the door......

Tom sitting at the little table rolling cigarettes, listening to the radio and talking to his old hound dog "Maggie" who lay on the floor by his side.

As I got closer I heard him tell her "soon ol' Dad will have a bed in here for us....and than we can spend a night or two in here together"........
************************************************

In Toms mind, putting in the wood stove was a breeze... it went well and we had fun doing it together.....while the girls scampered around the yard playing with there balls and sticks.

Tom did well when we went to the store to buy parts for the stove..... There was a time we loved shopping together and than the time came that shopping for Tom became a night mare to him.....

Since the new medication he was fine in the store but I still had to help him find what he was looking for.......and when we got to the check out I sent him out to check on the girls in the van......

Tom struggled with what order to do things...... he had trouble fitting pieces together......really wasn't sure what to do... so I tried to guide him in a way he didn't notice.... he did a lot of screaming and hollering out of frustration, but I would calmly redirect so he didn't notice his own confusion.....

BUT I DID LAUGH when he asked me to put the tar (in a caulking tube) on the part that went on the roof.... he watched me struggle to squeeze the caulking gun and yelled out orders like a drill sergeant.... "more here...not to close to the edge .....come on your squeezing it like an old woman.... more over here...geeze I should just do it myself".............  I laughed and said "why aren't you doing it?"  He said "because you want to"............ "No I don't" ....... "Yes you do because you think you know everything."  I said "here...you do it........I want your job.....I want to sit and tell you how to do it and where to put it."    He so didn't get it but did finish the job. LOL

So I agreed with him that it went well and we all had fun doing it together.

GO TO SLEEP!!!!

I'm use to getting up at 4:00 AM to let the girls out to go potty...... I'm even okay with our 4:00 AM occasional coffee parties..... But getting up to go trapping at 4:00AM has me in a bit of a tizzy.

I told him,  "be quiet and go to sleep"..... he said, "I'm getting up and going trapping"..... I said, "no your not go to sleep".....he laughed and said,  "your funny"....... I said,  "go to sleep".....

He was quiet just long enough for me to drift almost to sleep and he'd start in again...."I'm wide awake!"....."go to sleep!"......."I hate getting woke up," referring to the girls..... "me too go to sleep!"........."I'm going trapping!"......"no your not go to sleep!"...... giggle.....

6:00 AM Tom flies out of bed....turns all the lights on.....TV blaring.....the girls all curl up around me looking out toward the other room....They look at me as if to ask...What's wrong with Dad?  They know this is NOT the morning routine.....They wait for me to respond to see if it's safe to get up.......

I get up and join Tom... he's laughing....slowly the girls emerge with caution...... their tails wag when they see everything is fine.  We'll take a nap when I get home he says......

He sharpened his chain saw...he uses that to cut holes in the ice.  Fixed a hole in his boot where the seam let go......drank lot's of coffee ......and slowly put his layers of warm cloths on.  I could tell he had a time of departure in mind.

He left at 7:30 AM and as he walked out the door I said "no telling anyone F**k You! or anything thing else that's not nice......"Okay Mom,"  he answers as he slides out the door........

Tom was back by 8:30 AM..... "That was quick" I said as I greeted him at the door.  "The ice is all slush so I pulled my traps"....... He looked bummed..... He went back to bed and left me to start my day......?????
***************************************************

I am well aware that it takes time for the meds to build up and level off in his system...... I also am aware of some decline...... And where he plateaus is anyone's guess.

So I try not to mind bouncing around like a big rubber ball and just go with things the best I can........ It blows my mind to see how clueless he really is about everything going on around him..... And he thinks he's as sharp as a tack......

Oh Boy! I have some ideas to keep him occupied till spring thaw... I hope it works.

Happy Birthday Tom ❤

Tom I really missed you.... I seen you slowly turn and leave....
I wanted so desperately to keep you...here safe with me.

But the demon that dwells within your head.... had a firm hold on you
He managed to  drag you down, into the depths of hate and despair.

I cried and called out to you....pleading for you to come back.......
But the demon had his grip on you and you weren't turning back.

This is where I turned to God and on bended knee I prayed...
Oh Lord please bring him back, safely to me.

The Lord gather up his/my children and softly spoke to them...
I need you all to help me, with your mothers plea.........

For her faith is strong and withstood the test of time.....
through all the trials I've put her through..... she never faltered, not one time.

She has always turned to me, on bended knees and prays
remembering to come back , singing thankful praises to me.

Tom is back safe with me in my care again.....
as we continue this journey together...... to the bitter end.

 "I Love You Tom"     Happy Birthday and Welcome Back