THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Target!  Excellent.  We don't have a Target in our community but on my last trip to Calgary, we stopped at Target.  I'm a big fan.  Had a look around and they had Depends on for $12,47 a box.  I was so excited.  Bought the last 3 appropriate sizes on the shelf.  Yes, that is what my good time looks like now.  The basis for excitement is Depends at a good price! 

Doing better though.  I still haven't come up with a catchy phrase but sometimes just remembering that "I pick this" meaning I still choose to have him at home rather than in care, actually works in putting the exasperating things in perspective.  And the care staff I have right now is good.  He has good days and that makes it easier in the evening.  Still need one more though for the ocassional few hours on a w/e or an evening here and there.  And he can still ride his bike!  so that is something nice now that summer may actually be here.  Looking forward to Will Watson Lodge with our friends.  Will take our bikes and relax.  Yes, it is a bit to organize but at least when you are away you don't do laundry, groceries, mow the lawn, or pay bills. 

I need a short snappy phrase that I can say to myself that reminds me that Al didn't pick this, Al can't help the way he is, Al is trying the best he can and that after all, for right now he is living a pretty good life and he is doing so because of what I have done and I need to remember that I have been pretty successful at that.  Muttering "jesus, fu...idiot"  "moron" or "can you be more useless?" under my breath is really not doing it.  And I know that.  But those phrases comes to my mind easier than ....well some snappy phrase that I need.  These negative thoughts make me negative, angry, frustrated.  It is not doing either of us any good.  I know in my heart that if he had a clue what was going on he would be devastated.  A working man all of his life, doing, accomplishing, productive.  This?  my god, he wouldn't be able to stand it.  He understands some things, some phrases, but really I can't remember since there was actual conversation (that made any sense), I hate how when we are out I watch like a hawk, where he is, who he is talking to, can he find his way to the bathroom, and more importantly come out  in a respectable fashion.  I hate how my time is spent organizing care, activities, cleaning up, hiding things, constantly looking for things I should have hidden because it came into his line of vision and he has picked it up and it is....I hate how the minute he is bored he wants to go home.  You are home!!!  or how he will say "there's nothing for me" because I am busy doing something and no one is around to keep him occupied.  I hate how it takes him 10 min to put on his shoes and then when he shows me, he is wearing one hiker and one runner.  I hate shopping for depends, and ensuring he always has a change of clothes where ever we go.  I hate him asking to see his mom and dad when they have been dead for years.  I hate that he doesn't know the difference between shoes on and shoes off. I hate how when other people ask him how the day is the answer is Everyday is Fabulous, but when I ask, its Alright, Everything is just alright.  It doesn't matter what I do, what I organize, what I cook, where I take him.  It is Alright.  But with me, its never Fabulous anymore.  I hate how I lose my temper and glare at him.  I hate how I take things out his hands and put them away.  I hate how I finish his sentences to acquaintances, or add clarification because its pretty obvious that his last statement is a complete mystery.  I hate how this is our life now.   There is no peace for him unless his day has been so busy, he has walked so far and physically done so much that he is finally beat, And so no peace for me.  A last hour of rest and relax before bed, a solid sleep till 6 or 6:30 then he is on his feet.  And we start again.  Another day. 

I actually shushed him – told him not to talk.  The look on his face said everything but he did just that and I was relieved.  I hardly ever know what he is talking about anymore.   How was your day? Good.  What did you do today?   I don’t know.  Did you go to the volunteer lunch and did you see the guys you water with?  Hmm, maybe, I don’t know.  We went under and over, you know it goes up and up and then down?  He is waving his arms around showing me something – but what?  Didn’t you see the guys you water with at the hospital?  I think so.  I got it wrong, I wasn’t thinking.  He looks a bit distressed now.  Did you see them?  Yes.  Did you say hello?  Yes.  Well that was nice then.  Was lunch good?  Hmmm yes.  Yes, it was nice.  Up up over.  You know like this.  Well that sounds really nice then.  Typical conversation now.  But on Sunday we had just ran into someone he had known for many years – an acquaintance really, but they always used to have those little 10 min visits when we would run into him.  But of course, the friend is making conversation and Al is smiling, delighted to see him, yes, yes, up and over, swoosh!  You know?  The friend is confused.  He is looking at me.  I ask Al – are you talking about the seniors centre?  Yes, well, up and up and over. Lots of people, its pretty good!  I smile and ask the friend if he ever goes there.  No.  But he is polite, a few more pleasantries and off we go.  By the time we get to brunch I have had enough.  I am tired and cranky and don’t want to keep up all the conversation.  My aunt is trying so hard to listen to him, and have a little conversation but of course, its ridiculous and finally I just quietly tell him to stop.  He does what I ask, doesn’t protest about the obvious unfairness of it, how awful it makes him feel, how totally unsupportive and just plain mean such a thing is.  He is just quiet

It has come up at the last 2 meetings - there is no extra capacity.  A friend sick, my sister worried about what would happen IF, there is no room for more.  No matter how much I would like to help, I can't.  This plate is FULL.  Plus, anything that happens is now more complicated.  Al had a pacemaker put in in Friday.  The bandages have to stay on for 7 days, no showers (challenge), activity a bit more laid back, NO lifting of anything over 5 pounds.  So as soon as he gets out of the car Friday night, he is trying to move the huge bundle of potting soil in the garage.  DON"T TOUCH IT!  Well!  Friday night I have booked extra home care (to deal with the no shower/soiled depends issues) and he is quite offended.  And Sat morning, first thing he is trying to pull the bandages off! When I checked at 4pm it had bled a little so a little trip to emergency to ensure all was ok.  Really - just trying to get through say 36 hours before he pulls the whole pacemaker out!  and every  min I am saying NO, don't pick that up!  cause all he really wants to do now is walk around and pick things up - as long as they are over 5 pounds.  how we will get though a month of this I have no idea.  First goal - one week to keep bandages on.

On w/e I am getting to master the 5 minute shower.  Constant fear of flight now.  2 weeks ago he took off from his worker.  I think he had been hanging around the house too long (an hour) and so when C went to the washroom Al left.  1.5 hours later I called police.  Friends and family thought it must have been terrifying but it wasn't.  I guess I knew this was coming.  So we checked his regular routes, all the usual spots he might go to.  The weather was fairly good and while he wasn't dressed particularly warm he did have a hoodie for warmth.  And I knew what he was wearing.  Police were great.  One good young fellow put on a couple of K with me up/down the coulees.  Al did answer his cell a couple of times but couldn't tell me where he was.  And when a young policeman pulled up beside him on a road, said his name and told him I was looking for him, Al happily took a ride home with him.  None worse for wear. and thanks to the friend who left work to stay at the house in case in showed up, and of course the multiple trips worker C took back and forth across the river bridge, a bit more anxious with each call.  But it all turned out.  Except now, on the w/e it is always at the back of my mind.  The fear of flight.  Sometimes I get him to vacuum thinking that as long as I can hear that going, I know he is still in the house.  Always ensuring he is at some little task that will hopefully keep him occupied till I am shut off the water and call out How's it going and wait to hear - its ok. 

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