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!!!!!!

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

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

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<
 

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.

Forecast: Rain!

We have been doing the de-acf coffee now consistently.... and his medications have been taken at consistent times also and I see a calmness.......I asked if he has been feeling calmer in general lately and he said "yes and I've been feeling good too"....... he added.  "Not so tired".......

He seems to be sleeping better at night and really well when he goes back to sleep in the morning for two hours.... he says that's his best........

He still flies off the handle easily but most of the time I can see a trigger which usually has to do with frustration due to his brain not working well for him.  Or if I forget and interrupt his train of thought........ and of coarse if he thinks I'm telling him what he can or cannot do....... that goes with the no word..... all of which we try to remember not to say.

I think Tom is trying to adjust to "new loss" that he seems to be aware of.... he is fighting tooth and nail to hang on, which is good...... that's why he got so mad at me over a simple box.... he knew it should be simple but he couldn't figure it out.

We have some much needed rainy days ahead of us so I need to think of something to occupy him ........ yesterday was the first of the gloomy rainy days and he went into a slump and crabbed at me all day.

He says he's bored.... he doesn't love TV...... I don't know....... any ideas?

Getting Better...

Tom had an episode last week end....I had to remove my self and the girls from the house so he could calm down as I could see he was escalating and wasn't about to stop.......

A reaction from me would add fuel to the fire and I NEVER react..... But I can also see he won't stop.... looking for a reaction.  So when I remove myself if he doesn't remove himself..... it put's the fire out.  

When my kids were little I would put them in their rooms and told them they were welcome to come out as soon as they calmed down...... well Tom is too big for me to physically put him in his room so I opt to remove myself right out of the house..... He calms quickly......

Tom is drinking coffee day and night..... I have now slipped in de-caf at night and after 3:00 pm.   It's making a difference with the aid of his new medication.....

It's a work in progress......

Obsessions-The Lawn Mower

Tom is at that fun stage where he gets something in his head and the whole day is wasted on this one obsession.  

The lawn mower is a prime example.  I have it taken care of via my daughter for the neighbor to pop over and in conversation offer Tom help on fixing up his lawn mower.  He would than be compensated unknown to Tom.  But the neighbor didn't show up before Tom decided the day had come to address that issue.

This is considered a project.... projects are not a good thing when it's only Tom and ME...... I avoid these situations at all cost. 

But the neighbor didn't know that timing was an issue.... after all we need grass before you need the lawn mower and there is no rain in sight so he probably figured no ran no grass....... AND none of the neighbors see anything wrong with TOM..............

SO the next day after fighting to keep my head attached and all my digits (I need them all for counting) and the day wasted and my laundry room turned into a metal shop.....the neighbor stopped over to see how Tom was doing....

 Hadn't seen him around..... AND he is such a nice guy that he told Tom he could find him a deck for his lawn mower and he'd help him get it fixed up and running.
WHEW!  

After Terry left Tom said... "I'm going to have to milk this leg thing..... I said "what?"
"People feel bad about my knee .... that's why Terry is helping me"  Okay I'm confused and asked "Is that what he said?"........ "Yah ... he seemed really concerned about it." 

So last night on the phone .... Tom's bum knee turned into a torn ACL......???

His knee is causing him a lot of pain.  When it feels good he uses it in the same way that causes it to hurt..... and so it has been a circle...... I now put a brace on it to REMIND him not to use it......... OR HE WILL NEED SURGERY..... So far that works.

I Want It.....

I can see this is going to be a lonely journey.... Tom breaks every relationship I mend.  I'm running out of bandades........It's not his fault but it is such a hard disease to understand as it changes the person who has it. 

There's days I don't like him either and would rather not share the same space.... But I still love him and understand it's the disease not him....

Right now he is where he wants what he wants and if he can will just take it justifying it by saying.... I want it.

That's the short version... he can go on and on with a big temper tantrum too..... I hear he was good at it as a boy.  He ALWAYS won.  Hmmmm!

So I am coming up with a new vocabulary that does not include the words...NO and CAN"T and any words that are related in any way..... yet  manage to divert the situation without a demonstration on his part........

ummmm....... I'm still working on it. 

Easter Week-end

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.

The Beast Has Calmed......

I was just kidding about the duct tape for anyone who does not know me and my sense of humor.........

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.........

: (

I feel my nerves are fraying.......the constant...MOM!......MOM!....MOM!!!!

Has anyone used duct tape?  Just wondering if it worked......

Update

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.

DR. 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 yesterday.  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!

Up-Date

Just a quick up date for those who are wondering about the silence (inactivity) on my blogs.

Toms'  body/head is busy adjusting to medication changes.... and changes as in decline so we are kind of bouncing around like a big rubber ball.  Those that KNOW Alz.  know this is a busy time for me. 

 He does have a Dr. apt on the Thursday to work on finding the right combo for him......

Everybody is different so it's not a standard if he does this give him that......There is nothing easy about this disease.

And as Alzheimer's is well known for........ you never know what's next.  Well we aren't where we were and not done going where we are headed....

My yard is all water and mud and my four girls are loving it and I'm not.  But my sister knew how to brighten my day........

Grampa's Shack

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 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.

Sheriff Dept.....?

Tom told me this story in broken pieces....I'd ask questions to try to get the whole story and put the events into the right  sequence.......It took awhile because he had a hard time answering what I thought were simple questions.  He didn't seem to notice he wasn't telling it all.....

This is odd because before this rage/decline event he would tell a story in depth and embellish  each time he told it........ Everyone he told was right to the punch line with nothing to add.........

This is what I put together 6 hours later........... they pulled up as he was setting a trap.  They turned their machines off.  They nodded and said hi as did Tom.  The one said "Sheriff Dept."..... Tom thinking it was someone who knew him was pulling a prank and answered "F**k You!"

There were no markings on their snow mobiles, they were wearing snow suits and helmets...... Nothing told Tom they were "law enforcement"

They talked trapping, exchanged names, asked Tom where he lived, Tom told them he had Alz. so he doesn't wonder too far from home, they asked if he is taking medication, he said yes.  Tom shook hands and said nice meeting you when they left ....... he didn't apologize and that's what's eating at him some....

I asked when did he realize they were for real the Sheriff Dept.  He said toward the end when they were ready to leave the other one turned just enough where Tom seen a badge....... that's why he shook hands and made nice.....

Bad Day?

After having our first real bad episode of anger and rage that was "different" from when he just gets really mad.....I decided to  move here for those who want to know "the rest of the story" 

This episode was slow simmering under the surface for at least  week... Tom wasn't sleeping day or night.... he was having headaches ...... he was irritable... there was nothing right with the world.....he was confused..... and making impossible...unreasonable.... out to lunch.... crazy... demands......

I did all I could to redirect and finally just said no...can't....won't....and that's when all hell broke loose.......... I was face to face with the devil himself..... I didn't know if I should head for the hills........ stop, drop and roll......... call 911?  I ended up calling "'my people"  who came out and together we were able to get things under control.....

Next day with the help of "my people" I was able to get a prescription for "risperdal" an anti psychotic they use to calm the beast when that part of the brain is under attack.  It also helps him to sleep.

Thanks to the amazing people on the Alzheimer's forums,  I recognized what was going on and what I needed to do.  Fast action by "my people" and the help of the wonderful people on the forums convincing Tom to take the medication we have "tamed the beast"...... for now.

In the beginning of the journey I learned "Acceptance" was the first hurdle to clear..... with time I am finding out education and preparation  is #2 .......(a plan)

This episode could have turned out bad if I had not been aware of what was going on and how to react and the solution as this does not go away by itself.... It requires drug intervention.

The other stuff  I write about on my other blog is like a dance......... you learn as you go.... as no two people are alike..... and Alz Heimer is the" fiddler"