THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA


June 25/14.  Sold Al’s tuck today.  Just didn’t make sense to keep it. One driver, multiple vehicles: insurance, registration, oil changes.  Had to go and get the battery boosted this spring cause I just didn’t start it enough this winter.  Actually a pain in the butt, another task on the list.  Much better to be rid of it. 

But Al loved that truck.  It was the nicest truck he ever owned and somehow, in the depths of my hopes and dreams, longing for a miracle that would never come, I always imagined something amazing happening, an awakening, an understanding, a cure! And he would know that I never gave up because I held onto that damn truck. 

But of course there are no miracles in our future, no cures, no drugs, no surgeries, no therapies, no wishes…and no need for a truck. Another luxury we just don’t need and can’t afford. 

I had quite a cry for one more loss, one more thing I have taken away from him.   Al came home.  Didn't notice.  Money in the bank and I guess that's good. 




June 22/14. It has been about 3 weeks since my holiday and Alz stay in respite.  What a great thing!  I have to say that the break really improved both my attitude and our relationship.  At this point I don't think he really differentiates between me and a couple of other regular (paid) caretakers.  Actually one of them is probably with him as much as I am as she takes care of his the bulk of every work day.  But it is what it is.  When I picked him up from Respite he was really glad to see me, and happy to come home and see Lola/Willow (cat gets whatever names he gives her at the moment).  As we were packing his things I asked if his stay had been good, YES. Could he come there again?  YES - awesome, because he is going again in July!  I think the Respite has given me some room - and some time. I had in mind that he will be in care this fall, but if I can continue to have a break here and there - perhaps I can keep him at home longer.  He is enjoying each day, the sunny weather helps.  And to my delight yesterday - we got out our bikes yesterday and he jumped on and we went for a ride for about 1/2 hour. No issues.  That improves our summer!

Staff called in sick, so it was another unexpected holiday for me.  On the positive: nice day, went for a good walk with Alz, did a little garden work... but the fact is I have a job.  Expectations.  And while I am lucky to have a very supportive working environment, tasks need to be completed, on certain days.  and taking an unplanned day here and there is...inconvenient at the very least - for customers, for collegues. and certainly for me.  But there aren't any choices.  he absolutely cannot be by himself. Way past that. And no where to send him.  VON provides a nice lunch and a tv and perhaps a bit of bingo or cards, locked up in a little space, they MAY be able to go out to the garden space for a bit of fresh air but since Al averages 10+ km a day that is not really going to cut it.  So I was off.  Again.  It seems like a minor thing, but I think it will be the little things that finishes me: a straw that will eventually break the camels back.  Days off work, dates with friends cancelled, meetings missed, trying to do a chore but stopping every 5 min to check that he hasn't gone for a walk, looking for the screwdriver I put down THERE not one minute ago, now looking for the drill. All his pants on the floor as he has been "organizing".  slippers on top of the china cabinet, my runners "put away" on the dining room table. it is the relentlessness of it all.  Every minute of every day.      

June 2/14  I have been on "holidays" for a week.  Al went into respite on Monday May 26 and I will pick him up the day after I fly home tomorrow.  It is fabulous!  I feel rested, relaxed!  I am having a good time and enjoying my family and site seeing a bit without constantly looking for Al, watching Al, wondering what Al is doing if he is out of my site for more than 5 minutes.  I was very anxious about it but did a test run at the facility last month.  I have sent his regular support staff every day including weekends so Al can go out for a good walk, out for coffee etc. As he typically walks at least 8 km a day I knew that being rapped inside would be terrible for him.  each day staff texts me and says he is fine so I feel good about my plan and my decision.  There is no doubt that I wish the old Al would have been able to come and enjoy sites.  He would have loved the wine tasting!  He loved to travel and could make a simple day trip a holiday.  I miss him.  But I miss him every day at home too and I know he cannot differentiate between Niagra Falls and the lake he walks around every day.  So I am enjoying myself and am looking forward to picking him up on Wednesday.  

I haven't written in quite awhile and I guess that is because for us, right now, things are pretty smooth.  The staff that I have with Al (some private, some through agency) are all wonderful caring people and I am very grateful for them.  Particularly The Saint - my gosh this woman is amazing.  From the minute she comes through the door she chats away with Al, gets him organized for the day, visiting away as though he can carry on a real conversation.  I am grateful for her.  On the weekends, when he realized (or I have told him) it is just him and me he's say "oh, no one to talk to..."  Well thanks!  But really it is me who is guilty.  I just don't banter with him anymore.  A few statements usually to do with the weather, eating, what we are doing, but not really visiting.  And in all honesty, I just can't be bothered.  I have lots to do between work, taking care of everything to do with the house, the few things I try to hang onto for my own self, there just isn't enough time in the day.  So sitting at the table looking at the Christmas catelogue and talking about furniture, shoes etc - nope, I just don't.  So I am grateful for The Saint and hope she will stick around for quite awhile.  Other than that we are ok, settled into a routine.  He can still come shopping, we can still go out to the pub with friends, he sleeps pretty well.  Really we are ok. 

But my fuse is short.  I have learned to keep a calm voice with Al, regardless of the fact that he will walk into the house and not think about helping to take in groceries, never takes off his shoes so I wonder why I should ever bother washing the floor, keeps "putting things away" to be discovered after an hour of searching, or a week. Mostly I stay calm.  It is easier.  But little things in my life really tick me off.  Someone late?  Didn't do something they said they would do?  Dishes left in the sink?  Or worse, food scraps.  Dishwasher ran only 3/4 full - apparently that was favor. And for the staff that has worked in this house for over a year and still puts bowls away in the wrong cupboard.  Really?  How is that helpful?  My voice is tight, barely controlled and the young gal (actually very sweet) who used a metal spoon on the teflon pot was rewarded for making oatmeal for breakfast with quite a nasty remark.  The truth is,  I am still a very angry person.  Angry at Al for getting this disease, for ruining our lives.  We should be travelling, I should be weaving as much as I want.  It shouldn't take me a month to read a book.  Oh yes, people will say it isn't his FAULT, it's the disease.  Yes but so what?  Emotionally, I don't just resent the disease, I resent Al. I resent cleaning his shower every day, sweeping up after him every day, spending hours organizing staff, finding activities that will help him to work off some of his w/e energy so that I may take an hour to do my own chores. having to watch him every single minute at every task we do because the minute I don't he will do something stupid.  Yes!  Stupid!  Today I thought he was right behind me at the recycling bins heading back to the car.  But no, he had to stop to stuff our green box into the bin.  So when I get back to the car, I have to go and look for it.  And it is like that every day.  It isn't that I have to do things.  Its that I have to do hem twice.  Because ever helpful Al has moved it, thrown it away, walked over it.  And its not going to get any better because This is Alzheimers.  And I am Alz wife.  So suck it up princess!

March 30/14 



Like us on Facebook