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Bob and Deb

Bob2
In 2007, at age 57, Bob was diagnosed with Early Onset Alzheimer’s disease. He lost his job and later his driver’s license. For a couple of years he could manage day to day: get groceries, tidy up at the house, a fitness class to start each day. Soon these simple chores became difficult. But the changes were gradual, insidious, like a thief who steals your husband while you are busy living. My hunt for programs, scheduled activities that would interest him began. The Recreational Therapists with AHS were great, but with only 3 for Southern Alberta, the waiting list is long. No program exists for someone who can be actively involved as long as they have some help. Bob needs to be cued for almost every daily living activity, but he is still very active; he loves to walk and ride his bike. Even though his verbal skills have deteriorated to the point where he cannot follow simple directions, and no one really knows what he is talking about, he does love to visit. Bob is still living at home because I have the Home Care support that everyone else I know in EODA needs but are having difficulty getting. But the time is approaching when even this won’t last. And where will I place this warm, funny, gentle and very energetic man?

May 14/15  Four months ago I moved Bob into care.  I  thought my heart would break but I just couldn't do it all any more.  I couldn't be 'on' 24 hours a day anymore and when it came to the point of me or him I did what I felt I had to do.  And already I see the changes, faster now.  He is all about the moment, if the moment is good, he is good.  Extra staffing to get him out in community is very close to the same cost as having him in care.  He still loves to walk, to be with people, to visit, to bowl, to be out for coffee, to go to Walmart!  and I guess that is what we saved for, to take care of us when the time and need came. But we never thought it would be now.  65! Living in care.

UPDATE (March 2016): Bob moved into St Mikes Health Centre in January 2015. I thought my heart would break but I just couldn't do it all any more. I couldn't be 'on' 24 hours a day anymore and when it came to the point of me or him I did what I felt I had to do. A year later people ask how he is doing. They ask because they are our friends, because they care and I have to remember that because I feel like shouting How Do You Think He IS? He can’t dress himself, or clean himself, is totally incontinent. If he was hungry he doesn’t know how to find the fridge, or a cupboard and get a cookie! He just doesn’t get it. Sometimes he instinctively knows “pull up the pants” but could just sit with his pants around his knees. He can’t turn on the tap to get a glass of water. He is all about the moment, if the moment is good, he is good. If people speak kindly, he responds. His world is so small now. He still loves to walk, to be with people, to visit, to bowl, to be out for coffee, to go to Walmart! Extra staffing to get him out in community is very close to the same cost as having him in care. I consider myself lucky I am still working so I can afford to provide that level of care. I guess that is what we saved for, to take care of us when the time and need came. But we never thought it would be now. Bob is 66. I am 60. But what if this goes on for another five years?

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