THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Feb 27/16 Al has been in care for over a year.  As I promised myself, I do not go every day.  I have a life now, or at least I am trying to.  Mostly I think I do.  But not one I envisioned.  Its not what I thought my life would be, but its ok, lots of time it is good.  and without a doubt, on a daily basis it is easier.

I am starting to travel again.  Nothing over a week or so. I find it hard to be away from him for very long.  Huatulco last month, but uneaasy for me as the cell service is not great and even though I know I cannot be at his side in a couple of hours should the need arise, I dont like to be unaccessible.  An the trip was good, great area to relax, perfect weather, excellent companionship with friends but something missing.  Just those little minutes when his bright red snorkle is not close by, when he is not dozing under the palapa, not trying to speak his poor spanish.  Not there. 

I keep busy.  Lots of house projects to catch up on, I try to see friends, to spend more time reading (actually can read for 1/2 hour without falling asleep, I am weaving more. 

His day is the same every day.  Up early as he has all his adult life.  cleaned up, dressed, eat, walk the hall, walk the hall, walk the hall.  daily diversions including going out with support staff I still have for two hours a day, on the weekends we go for a good walk weather permitting.  He still likes walmart!  but if left to his own devices he is walking again, or sitting and talking to himself.  drifting farther away. 

Aug 16/15 Filberg festival in Comox Aug long weekend.  John Mann was on stage, his beautiful voice as wonderful and captivating as always.  Spirit of the the West lead singer and front man, I have not seen them in a number of years but always enjoyed their concerts. But for me, the wonder at the Filberg was the man beside him.  Filberg festival revealed him as Alan Roger.  John Mann wa diagnosed with Early Onset last year, and those fans like myself who so clearly understand what that really means have no words of comfort.  But to watch the easy support offered by Alan Roger really did make my heart glad for John Mann and for all those who love and support him. Because this is how support should be - that when you are diagnosed, you continue to work, and those that can help you to put in that successful days work, "not sweating the small stuff" but making all of it natural, comfortable and true.   the thing is , the diagnosis should not mean you have  nothing left to offer.  I know that the work of a musician is nt the ame as the work od a teacher or a nurse or a builder - but it must also be recognized that a diagnosis doesnt rob you of all your skills.  Lots of people could continue is some capacity with just a little help.  Alan Roger - you are a good friend.  And you are doing exactly what you need to do.  I hope you can continue for a long time.

  • Although he is now in the moderate to severe stage of Alzheimers, his presence is strong.  He can't read write, talk clearly, make a plan or think, but he is intensely present; funny, affectionate, still capable of plesure.
  • If he could, he would. (He) is un-learning.  Understanding this makes life much easier for us both.  But how long it took me to understand, how mnay hassles we endured before I learned.
  • We have come a long way:  (he) in his decline, me in acceptance.

I have just finished the insightful and wonderfully written book by Ann Davidson "A Curious Kind of Widow" (quotes above). It is about US, and all the other couples in my group.  It is four months now, AL in care, me really a single woman.  Our visits are mostly sweet and I am often surprised ar just how much I miss him when I dont see him for a number of days.  But I vowed, and I think correctly, that while I am still working I will not see him every day.  and when (IF) I get to retire, I hope i dont get pulled into the daily visits I see so many actually do.  The fact is, I still have a life, hope to travel, to weave more, to garden, to spend time with friends, and starting to do some of this now, I sometimes feel as though the last almost 10 years were a blur, certainly the last 2 had the potential to finish me!  But sometimes now, I feel I have come through the other side.  But I miss the constant political commentary, the love of great food and wine, the plans for the nextand when trip, the delights of the first garden treats.  I miss his comfort and his passion.  I miss that annoying, argumentative, stubborn, steady, helpful, fun man in my life. It is only the wide smile, the little skip down the hallway so glad to see me, the big hug that makes me think I am not quite alone yet.

June 5/15 Its a drive, and a half day for me as my support group is 2 hours away.  But where would I be without them?  But Tues meeting brought home the reality of just how luck I really am.  Again. My Al was always so laid back, and with just a few exceptions still is.  All my planning, all my efforts worked for him. Getting him out and about every day, keeping him busy, on the go,  just like a job. And he did it.  But what if he hadn't?  As our colleague Larry said "if you know one person with Alzheimers, you know one person with Alzheimers".  My Al never had "clothes" issues.  Every morning at home he got up and hit the shower as he had all of our life together.  And put on clean clothesI I never had to hide the dirty clothes, I never had to argue about what he was wearing.  And he always, and still does get in the shower when I suggest it.  But what if he wouldn't have?  What if the water frightened him, or he just got too cold?  What would our lives have been if he refused to go outside anymore?  Or to accept that others (support workers) were with him?  I hear the stories over and over again and wish that I had one good suggestion, one good experience that would work for someone else.  But the reality is that I am lucky.  And they are not.

His birthday is in Feb, always a good time for a tropical beach vacation away from the snow and the cold.  His 40th was Florida and the Bahamas.  His 50th was Hong Kong, Bali and Thailand.  55 in India, 60 in Huatulco Mexico. Lots in between and even some in the last few, but it just got too hard.   65 should be the year of freedom, a celebration when many of us look forward to retirement.  But he didn't get to retire, he lost his job. Luckily I guess, he doesnt know that anymore.  One of the little consolations.   On Wed he will be 65.  What to do to celebrate this momentous occasion?  No more holidays, even a 2 hour car trip is difficult.  He doesnt understand where he is or Why.  Can I bring him home for supper with just our very closest friends?  I don't know what to do.  It just doesn't feel like anything worth celebrating.  And he won't know.  If the day just came and went he wouldn't know the difference.  I was trying to find him a birthday present, but what?  Can't read anymore, can't travel, certainly does not need any tools, or beautiful things.  I could wrap any of a number of his cherised Royal Dalton figurines, he loved their detail.  Any one would be new to him.    He has enough clothes to last him years.  He used to love to go out for dinner, but I don't think he will have the patience to sit. Nope, looks like bowling and cake at the Seniors Centre.  Freedom 65. 

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