JOAN’S BLOG – WED/THUR., APRIL 13/14, 2011 –TOO MUCH FOCUS ON THE STAGES OF ALZHEIMER’S DISEASE

Many of our members are quite concerned with the “Stages” of Alzheimer’s Disease. So often on the Message Boards, we get questions from newbies and veterans alike, asking in what “Stage”, “sub stage”, and “sub, sub stage”` we think their spouse is functioning. It seems to be important to them to know. In the side resource, Newly Diagnosed/New Member, there is a section with a variety of links detailing stages. However, it is my opinion, and my opinion only, that it is an unnecessary waste of energy to focus on “Stages”, if for no other reason than no Alzheimer patient ever goes through the stages exactly as written in any particular time frame. At any given time, they may exhibit functioning abilities in three different stages at once, bouncing back and forth from day to day.

For example, my husband functions normally in all of his ADL’s. He can dress, shave, and shower himself. He can make himself a sandwich, warm up food in the microwave, and fold laundry – not willingly, but he IS capable of completing those tasks without any assistance. That would put him in Stage 0. On the other hand, in the 1 ½ years we have lived here, he has not been able to learn our phone number; he often does not know what month it is; has almost no short term memory, motor planning skills, executive functioning skills, or reasoning ability, which would put him solidly in Stage 4, heading quickly toward Stage 5. He even exhibits some characteristics of Stage 5, such as not remembering his phone number or some of his personal history. Most of his Alzheimer’s buddies also overlap and bounce around stages.

Instead of focusing solely on every task listed in the 7 different stages, I prefer to focus on two areas - the 3 main 'stages' of functioning and what he is still able to accomplish on his own.

I simply divide Alzheimer’s Disease into 3 Stages – beginning, middle, and end:

Beginning
Some forgetfulness - as in repeating the same story over and over, forgetting appointments and parts of conversations
Possible significant behavior change – temper tantrums; irrationality
Forgetting some work tasks
But overall, still able to function almost normally

Middle
Lasts the longest time, and encompasses a series of continued declines in memory, reasoning, impulse control, ability to follow conversations and movie plots, comprehension of abstract ideas, and focusing, as well as periods of seeming to regain some of these functions.

End
Bedridden, infantile, incontinent, unable to speak, swallow, recognize their loved ones. Not everyone exhibits ALL of these symptoms at the end, but it is still a bleak scenario.

As emotionally and physically difficult as this journey has been for me, and will continue to be; as heartbroken, angry, and completely out of patience as I often am, there is still a part of me that tries to focus on what my husband CAN do, rather than in what stage he is functioning, and what he can no longer do. Although I admit, I spend far too much time lamenting the abilities he has lost.

He is still able to go out to dinner, a movie, a play, a concert, thoroughly enjoy himself, and act appropriately. Yes, he forgets what he has seen, sometimes as soon as we leave the theater, sometimes while he is still watching it, but he is enjoying himself “in the moment”, so it is worth the trip. Sometimes if the outing was important enough to him, he remembers it weeks afterward. He is still complaining about the spring training Red Sox/ Mets game he attended a month ago. His beloved Red Sox sent ‘second stringers’ to the game, denying him a chance to see the ‘star’ players, and he is not forgetting it!

He is still able to get together with his Alzheimer buddies and play Rummycub and Dominoes. I do not know how much longer this will last, as I have noticed that he loses focus easily during the games, and has to be reminded constantly that it is his turn. He also needs a refresher lesson each week that he plays Rummycub. But for now, he is able to play and enjoy his day with his buddies.

As I mentioned in the beginning, I do not have to dress, shave, or shower him, and while I have been writing this, he has been in the kitchen putting together a big salad.

My method of “staging” may not work for you. You may feel the need to place your spouse exactly in each stage and sub stage, and there are certainly enough resources that allow you to do it. But for me, understanding that Alzheimer functioning is fluid, ever changing, and unpredictable, is more important that trying to be precise about stages. Three are enough for me. And I continue to try, not always successfully, but I do try to focus on the abilities he still has.

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The Alzheimer Spouse LLC
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