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.