THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

I have been to visit a few times - I vowed 3 times a week - no more.  The new normal is back to work, time to work out and get back in shape, time to visit with friends, time to get my life back.  And I think he is ok.  And I think I am too.  His support staff goes every day, so each day he still goes out into community.  I think this is important - to not hae too many changes at once.  So each day - out for a good walk, a coffee, a swim a couple times a week, the seniors centre that has been so unbelievably supportive through this.  And each day when I come home, it is quiet, relaxed and everything is still where I left it - a small thing but one that had been so damned annoying.  I find I am nesting a bit, enjoying my space and my time here.  Thinking about the renewal projects I am eager to undertake.  And when I visit him, it is good. I don't regret my time, I don't have to think about what is or isn't getting done. I can spend my time with him and actually enjoy his company again.  St Mikes is fabulous.  I feel so priviledged that he is there.  The staff is great, and it is obvious because every time I go to see him, regardless of the time of day, he is clean, content, relaxed and happy.  It was the right time.  And we are ok.   

Jan 11/15.  His room is ready, we have been moving things in for days. He always liked nice things, lots of decor and I have filled his room with things i think he will love, things to make him comfortable. He is there almost every day, a drop in for coffee, a little visit.  The staff is great, warm, caring.  Everything is ready. He goes in tomorrow. Part of me is relieved/anxious to start a life without having to ensure his every need taken care of, looking forward to cleaning my house and getting organized, and part of me just can’t think that he will never sing in the bathroom again Oh My Darrrrlin Clementine.... never sit and talk to his Pretty Willow, never sit at this table again. I can't  visualize it. And I can't say never. I don't know what things will look like a week or two, or a month or two from now.  But I am not ready to write him out of this part of my life just yet.  And so tomorrow I will treat it like the respite breaks I have had before.  That will be easy, that will be good, just a long respite.  That I can do.  Because anything else will just break my heart.

Dec 6/14 I haven't even opened my eyes but I am listening. I vow that today I will hold my temper:  no sarcstic  remarks, no short comments, one day, I just need to get through one day.  That little cough, maybe the indication that he will soon be up, but maybe, just maybe, a break - and he will sleep a bit longer.  I sneak downstairs and start the coffee.  I get a cup and actually read for almost 20 minutes before he is up.  Good morning honey!  Can I get you a coffee?  Would you like to have your cofee in bed?  or do you want to hit the shower?  But the stench is overwhelming so when he says it doesn't matter I start the shower.  and despite the promises to myself the first argument starts in the shower.  Always a private man , he doesn't like anyone touching him, but since feces is stuck to his testes, ther is no choice but to coach, coax, beg, c'mon honey, just quick, we will gt it cleaned up and you will feel better.  his temper is rising, that's enough of that!  I scrape excess out of the shower and clean it. and clean the floor, and taker out of the garbage.  He is showered, shaved, and dressed, protesting all the way with the indignity of it all.  3 immodium last night and still a mess.  An hour later and we start again. I am tippeed off because of the smell and now I am really begging, pleading.  He is furious, betrayed, why is this happening?  Why indeed?  2 loads of laundry in and its not even 10 am.

I have spent all day, the sweet begging little voice, always asking, always in the positive tone that says it is up to him - do you want to go to safeways, do you want to go for a walk?  My eyes watching every person who comes within talkng distance, ever watchful for an inappropriate comment, waiting for an ugly sarcastic remrk directed towards some unsuspecting soul. 

I am so done!  But what are my options  AHS facilities do not provide dementia care.  They provide assisted living with  a locked door.  Not the same.  I could do it. But how long will it last?  And then? EVERY report from my predecessors is bad.  Out the door, we cant handle it here, 4 weeks, 6, 8 in hospital, totally unequiped as well. Trapped.

Dec 14/14.  I've done it, started the paperwork.  I can't do it anymore.  Every stroke in the pool, every stretch in the gym. every breath.  Alzheimers.  It has taken over my life, and now I am done.  It is him or me and I pick me.  I haev had him in St Mikes twice for respite and think it is my best choice.  I have toured a number of others but in this community I think it the best choice for both of us.  I like the manager, what she says and what she is trying to do.  The staff I have seen ae gentle, kind and obviously very caring.  The units are small, the rooms are airy and bright and each has their own bathroom.  There is some recreation every day.  And at home, he can spend hours in his bedroom jut putting about, visiting with his much loved kitty Willow.   He often tells me is ready to go home, where ever that is, apparently it is not always here.  He is quieter, has less energy, is sleeping about 8 or 9 hours at night now.  More and more in his own world.  So it is time.  I am aware of the risk, but my plan is to move his things in and then over a week or two he and his staff will start to go there regularly: a game of shuffleboard and a coffee witht the guys.  I will keep his regular support staff as long as I can, a few fewer hours each week as he gets acclimatized.  so they can go out every day, out for a good walk, but then back there.    Not here, not anymore.

Oct 28/14 Since the verdict of Alz was delivered I have made every effort to not let it rule my life.  To not spend 24 hour a day with Alzheimers, to acknowledge that while his life was basically over, mine was not.  I have tried faithfully to keep weaving, reading, meeting with others who are NOT associated with Alzheimers.  And I have done this for over 7 years.  But I can feel IT encroaching a little bit more every day, barely an hour can go by without a phone call/and email/a thought/a memory.  The need to find out this info/update that/contact this person/change plans.  All for Alzheimers.  He is slipping away regardless of my every effort.  I would advise anyone else in my shoes to get him into community care, to step away, to start rebuilding their life.  But it always feels like punishing him for a crime he didn’t commit.  He is as sweet now as he has ever been.  Kind, quiet, unassuming.  Making every effort to not be “a bother”, still trying to be a companion. Trying to visit, to be funny.  He is easier now than 6 months ago.  He just cares less, in some ways has given up.  If I ask him to do something, or to NOT do something he just says OK  and then apologizes “I didn’t mean to hurt anybody”.  “You’ve never hurt a person in your life, its not in your nature.  Don’t worry about it.  I’m sorry too.”

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