THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Aug 24/14  Sometimes I think it is just getting easier.  Because Al is slowing down a bit, he doesn't need to gogogogo, he is more content just hanging out and seems to enjoy his time at home more.  I think he doesn't feel like he is missing something if he is not out.  He still loves to go - Costco yesterday which he always loves.  Physically, he seems a bit easier too - or perhaps I am just better at handling things. We are both a little more content.  And I am enjoyinghis company more these days.  Right now, its a good place.  I wonder why this is - I hear of others struggles with anger and I wonder if it is because for so many years I Al has really been denied very little.  Want to walk? Lets go.  Go here?  go there?  why not?  I have insisted that staff t{jcomments off}hat cannot walk 5 or 6 km at a time and go up and down hills couldn't work with him.  While it has made it hard to find people, I think (certainly no proof) that it has been helpful.  He has always been allowed to set his own pace.  I know if I am not allowed to do the things I want I am frustrated so why doesn't that apply to everyone.  More and more I see the need for supported continuance in the community.  And the need for real "out of the boxing" thinking. 

Aug 13/14  Day trip with LSCO day program.  14 people on a lovely drive to Waterton, one of the greatest treasures in a nation of fabulous national parks.  The weather was perfect, the scenery breathtaking, a perfect afternoon at Cameron Lake.  And Al loved it, loved the scenery, loved the weather, the company, the walking, the day.  "I could live here forever"  He was such easy company all day. Just happy to be out, with people, in a wonderful place.  Nothing to be anxious about, no chores to do, once we were on the bus it was just a mini holiday.  If everyday could be like today....we could do this for a long time yet. 

And for the most part, he is easy every day.  It is me who is not.  Work, chores, commitments - even the ones I want are sometimes just another thing on the list.  And so it is my temper that is short, my patience that are strained.  Because of course every day cannot be a holiday for me. But today was. 

July 8/14  I dream of freedom.  From putting shoes away and looking them because of course they are not where I left them.  From putting the newspaper on the counter and then finding it two days  later.  From locking every door.  From locking the gate.  From hiding every tool, every garden glove, from locking the front screen or ensuring the garage door is down so I don't have to argue about taking the bikes out NOW.  From finding my pants, or his, pulled out of the closet, rolled up in a ball and stashed under the dresser, behind the clothes hamper, on top of the china cabinet.  From finding plants pulled out of the garden and tossed to the side.  From the morning stench of his dirty Depends. From talking softly, enticing himto open his mouth to floss his teeth.  to making him change one shoe before we go out so he will be wearing a pair. From hunting for glasses, jackets, moving the furniture back again.  From searching, cleaning...Because that is why he exists now.  To hide it, to break it, to ruin it, Whatever it is, he has to touch it, move it, put it away.    He is a make work project.   Anything I do, I will do again and probably a third time, over and over and over again.  Because he CAN. NOT. STOP.  And now that I have made some decisions I cannot help but think, this is the last summer when the yard is wrecked, last time I attempt to clean the garage so I can find the tools I need to fix whatever it is you broke today.  I am tired of every meeting being interrupted.  Every activity dictated by his time, his workers time. My life not just dictated but controlled.  We are reaching that point.  Its you or me.  And soon enough I will sacrifice you and pick me. You will be "in care" and I will be free of you.

Aug 10/14

A fabulous 10 days of freedom and a glorious break with friends living the lake life.  Rested refreshed I was actually missing him and looking forward to picking him up.  And he was pleased to see me and happy to be at home.  Respite said no problems, just great, easy to get along with. My issue is that it has now been a full week and he still can't wear real shoes or his good sandles.  He has been in my garden quarks since I took off his socks and saw his feet the night he was first home.  Huge broken blister on the heel of one foot, blister on the other, plus a couple of other raw rubs.  Two of his regular support staff reported they had to fix his runners when they went to see him; the tongue of his shoes not even visible it was turned and pushed under.  So how is it that when someone is getting him ready for bed or cleaned up in the morning that they don't notice this?  If this is an indication of "care" how will I put him in?  Will I have to go every day and check him out head to foot to ensure he is actually ok?  On the other hand, stripping the bed every day, pee on the bathroom floor and I suspect the carpet in the closet which is suspiciously damp.  But amiable, eager to help, to be with me.  Happy to go to Walmart, happy to putter and sweep in the garage, happy to pet, talk to nd cuddle his Willowkittty. If I continue to book respite maybe once a month maybe we can go a little longer.

July 1/14 Can I help you?  Well that would be awesome.  Has a miracle happened and you know what a fork is?  or if I hand you all the silverware will you actually get it to the table, not the counter, not a chair, not the coffee table?  You could get the salad dressing out of the fridge but of course you would have to know which appliance is the fridge, and then would have to know what salad dressing looks like.  What I really do is smile and say thanks honey and hand him the silverware and let him put it on the counter and walk away....happily.  Having contributed! 

Yesterday careworker took him to Pizza Hut.  So today, he has diarrhea.  And how can a person not know when they are in a mess but can ride a bike?  And know to watch for traffic and to go off the path to make room for walkers/strollers etc? Yep riding a bike is great.  Knowing you need a shower cause you stink...well not so much. 

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