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.