THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Feb 8/13 It seems like a long time since I wrote and I needed to go back and see where I was in my thought process a year ago.  By Nov Dec of 2013 I thought that was it.  I couldn’t do it anymore.  I toured 5  assisted living (dementia) places.  That sure makes a person buck up!  4 totally unsuitable.  OLD people shuffling about, in wheel chairs sitting, staring with blank faces.  The rec therapy “calendar” listed bible study probably twice a week at one place.  He never embraced it before, can’t see why he should put up with it now.  One place gave me some hope. Completely redone and trying to gear towards providing care for “younger” people meaning recognizing that wandering the hall and a sing a long once a week isn’t going to cut it.  You’ve got to wonder what the hell people have been doing?  Stokes/MS/parkisons/accidents.  You see the odd “younger” person and it must be like a horror movie –locked up with people who can’t do anything anymore and can’t talk to you.   Why have their families tolerated it? How does anyone think it is good enough?

Took a break at Christmas, generally just a slow down to our life, taking it easier and it is better.  I am not mad anymore.  Right now, if I just remember that everything doesn't have to get done, and what really is and is not important, its ok.  Its like I have hit my stride and really we are ok.  I am going to pursue some respite though, if it works I think/hope little breaks will help me rebuild the energy I need. 

For the most part I have learned to control the tone of my voice, low, soothing, assuring.  And luckily for the most part he is done a little earlier in the evening and I have a bit of time before I go to bed for a little bit of solitude.  And Al?  on his worst days, basically quite spacey.  I wonder just how much he understands is going on.  He walks around looking for Lola, calls the other cat Lola, or by her own name.  doesn’t seem to matter. Last week he went to bed and then came down 5 minutes later.  I asked if anything was wrong and he said he was crying.  His little kitty was all alone now.  He  was so very sad and took a long time to be assured that we had loved her so much, and taken good care of her and didn’t want to suffer.  It has been 6 weeks and now he misses her.  But on his good days, and  that is almost every day, he greets the day with a smile.  In the shower, dressed, shaved, ready to go and meet the world.  Still walking lots, being with people.  The staff I have now is great and that helps a lot.  In the scheme of things – still kind of lucky.

Dec 14/13 She was sitting on the step crying. And the snowstorm was so bad I just had to take her in.  A beautiful fat calico, so fat that I actually thought she might be pregnant.  But we had 2 others already so Al made her a little covered bed in the garage.  And every day he would go out morning and night to feed her, give her a cuddle and have a little visit.  Despite posters, calls to every shelter, ads in the paper, no one claimed her and so Lola finally moved in. She was always Al’s cat.  Probably about 5 when we got her.  She loved to sleep on his work clothes, stubborn, pushy and very independent.  Every summer out all day, loved to go and had a wide range in the neighborhood.  And for such a little thing her body weight probably went up and down 3 pounds from summer to winter.  In the last couple of years, as Al has declined, so has she.  But always fast friends and as soon as he would sit, she would find him and sit on his lap.  And if he was not feeling well and would snooze on the couch, she would snuggle up and sleep on his chest.  The last year has been more difficult.  Some dehydration problems, periods of time when I had to give her fluids through a huge needle under the scruff of the neck.  But she loved to lay in front of the fireplace, still loved to cuddle.  But the last couple of days she has been off her food.  I have been down this road before and know that we cannot risk seeing how the week end will go.  So off to the vet yesterday.  I leave her for blood work while I get to another appointment and return later to pick her up.  I think that she will need to be rehydrated again, morning and night for awhile and I know that approaching 18 years, she does not have long.  But the vet wants to review her blood work.  This is bad, and this isn’t good, and this is not something we want to see.  And then I understand.  You think we should put her down now.  I know she is lethargic but she doesn’t seem that bad to me.  But the vet does not encourage me taking her home.  “Her quality of life is not going to improve, I think it is time”. After the last time, I vowed I would never haul an animal back and forth for me. I wouldn’t stretch it out, and I would never submit them to needless suffering.  That when it was time, I would not stall.  And I know this is right.  I call Al’s support staff to bring him, and he comes.  He is glad to see her, to sit and pet her but even though I tell him she is really sick, he doesn’t understand that she is going to die now.  So we sit for a bit, and talk to her and pet her and then I call the vet.  It only takes a moment, she slips away.  And he doesn’t quite understand why we are not taking her home.  But it only lasts a minute, by the time we are in the car he doesn’t remember and sings Jingle Bells all the way home.  And when he sees the other kitty at home, he calls her Lola, and strokes her and says what a good friend she is. 

The last time we lost one of our cats we cried for days. They are so much a part of our lives.  At least they were.  But he doesn’t know to mourn her for more than a minute.  One more indication that much more than our Pretty Miss Lola is gone. 

He hides shoes now.  Or he wears 2 different ones, one hiker and one runner.  Can’t find his glasses again.  But now they have been gone for weeks.  I think they may be somewhere in the garage but 2 hours there has been fruitless.  This morning, the back is gone off his cell phone and as soon as he was out the door with his support worker I finally hid the bike helmets to avoid any further discussion about how a bike helmet is not needed to walk outside.  Have to keep the remote control in a drawer all the time or that is 15 minutes every day.  One day, when I have actual time to really clean I will find a huge pile of all the things that I have spent countless hours hunting for.  On Thursday I foolishly put my cell phone down on the counter.  GONE!  I ask Al if he has picked it up.  Immediately on the defence.  NO.  Can you just check your pockets?  It isn't there. I had turned off the ringer for an earlier meeting so now I have to go from room to room trying to hear that little vibrate noise. And finally I can hear it, BY AL.  Not in his pockets, not in the coushions, or under the couch, not in/around/under/behind anything.  But each time I can hear that little vibration.  And finally, when I am helping him get changed, it is in his sock.  Now you would think those 20 times I called and it was vibrating against his ankle would have made him wonder what was causing that, but no, no sense of detail.  And I know that but I am still mad.  And he is mad, and it is a poor end to the day. 

Nov 11/13 We were almost backup the hill when I noticed he had on a sneaker and a hiker and the sneaker is on the wrong foot.  Do your feet hurt?  No, why?  I had his hikers on him 10 minutes before we left and then just ran upstairs to get a sweater....he can be darned fast when he wants to be.  Having shoes on is his #1 thing in getting dressed.  On a sat morning, as I am coming up with coffees, there he is , underwear, maybe a tshirt, but also with his sneakers on.  If I don't take his shoes downstairs once he is in bed, they must be the first thing on.  But if he sees me taking the shoes he is immediately suspicious.  Where you going with those?  I need those. Those are mine!  Out of bed, getting those shoes.  And he always wants to tie them himself, which means trying to wrap them around his ankle and tieing a knot. and then of course, when he can't undo the knot, yank on them till be breaks them.  Because this is what he does now.  Hide, wreck, break.  Anything and everything.  And the wet weather means wet shoes, but asking him to take them off rather than track through the house - WHY?  how totally unreasonable of me! 

They are little things, but it is the little things that are wearing me down. 

He hated American Beauty – NO SPIRALLING DOWN movies!    I sometimes wonder if he saw the future.  Sometimes I think he catches a glimpse of his life, of what is happening and knows that he is living that – his life spiraling down!  And when that happens he is angry, frustrated, so hurt and he lashes out at me and everyone around him trying to help.  He doesn’t want help, he wants to be left alone, independent, a man who set his own course, called all his own shots, he wants his life back.  He yells, he swears, tells the staff off and I can see them wearing out as well.  Last month Gilbert said he couldn’t do it anymore.  He came back, but only for early morning – one hour to help Al get dressed and ready for the day.  But each week I expect to hear that he won’t come any more.   Then 3 days of just perfect, each day upbeat, going, doing. Another good morning and then at 1:30 staff is calling me.  He was in a great mood, had lunch, sitting outside enjoying the sun, he was playing with the cats and then just walks off.  She calls him back but he won’t stop and when she tries to follow he turns on her, swearing, telling her off.  And so I leave work.  Again. 

Like us on Facebook