For some reason, unbeknownst to me, I feel compelled to put in my two cents. Perhaps someone out there needs to read this. Perhaps not. Maybe I am being prompted by someone's Guardian Angel to share my thoughts. Maybe not. Perhaps the only person that will benefit from this writing will be me. And that's OK, too!
This tends to happen to me when I recognize the same frustrations and the wide gamut of emotions that seem to plague the caregivers for "those who are no longer there."
I prefer to spend most of my time trying to bring a smile to the caregiver, preferring to dwell on the humorous antics of the AD patient rather than the constant stress and strain on the family. I think laughter is the most important tool we have in dealing with the lifestyle changes that come with caring for an AD sufferer. One of the more important aspects of this, is that spouses and teens can come TOGETHER with humor. It helps to prevent the rifts that can develop when spouses feel neglected or teenagers begin to "veg out" in their rooms because they do not want to deal with this new family situation.
Try to put yourself in the position of the AD victim. Each time you wake up, you are in a new place. You don't know where the bathroom is. You don't recognize the people, the house, or know why or how you came to be there. Only snippets of your history flit through your mind, with not enough organization to give you an identity, let alone a personality. It is frightening beyond belief, and primitive instincts for self preservation take over.
You try desperately to appear normal to those around you because you are frightened and want very much to appear normal. You stash items that you instinctively think will be of value at a later time, with no idea that you won't even remember where you hid them. You lie to those around you because you don't want them to have more power over you than you have over yourself.
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Get the idea? Now try to think of the AD victim's mind as a giant VCR tape that randomly rewinds to different points and stops -- then skips ahead and stops -- then rewinds again, stopping for only a few moments in any one spot. They tend to hang on to those moments, those small tidbits of rational thought, and replay them over and over, whether they be words or actions.
Those of us on the outside see what we consider to be repetitive activity that drives us right up the wall -- and that's OK. It is better to go up the wall than bang our heads into it. Try to ignore the repetitive activity if it is not harmful to your "patient." Remember that each time they do it, it's the FIRST time in their minds. Much of the hostility exhibited by AD sufferers is the result of our efforts to correct their quircky behaviors. Try to discern what MUST be corrected and do so as best you can. Refrain from trying to "correct" those things that are not hurting anything. You may enjoy a much more docile person.
I do tend to ramble on, don't I? I hope I'm not confusing the issue. The last thing I want to say is that you can laugh at many of these strange mannerisms without recrimination or guilt. Do so! Some of these things are hilarious. Let yourself enjoy the humor in them. It will do much to relieve stress and keep you sane. So many caregivers feel guilt when they laugh at these things or especially if they find that their thoughts drift to wishes that the AD victim just pass on and go away. Many caregivers even fantasize about how and when it will happen or even (perish the thought), think of how their lives will improve when the person is finally gone. Such thoughts are normal and healthy. Of course, we do not need to feel guilty for these thoughts. We must learn to put a high priority on ourselves and our normal family members as we continue the struggle to care for our Alzheimer's victims. Take care and good luck.
~Steven Stoker~