Being continually aware of how your loved one is doing—what triggers stress, what brings peace. Noticing the little things before they get big. Keeping your doctor’s appointment. Evaluating how the medication works—or doesn’t work. Keeping track of the behavior patterns, the cognitive levels, etc., etc. That’s the assessment part. You and the doctor need to know what you are dealing with and you are the one on the front lines. You do the first assessments—and if you are smart, you write it all down. Not only is a written record valuable to your doctor, it is to you too. You are a busy person and can’t be expected to remember every little thing. Some little thing that you document may be just what you need when you are trying to figure out what triggered your loved one to act out, for instance.
And then there’s adaption, a very necessary part of dealing with this disorder. Lisa, the wife of a man with LBD wrote, “The disease marches ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path, not too unlike Sherman's march to the sea during the Civil War.” She continues, “ Luckily, it is slow. It eats away in little increments, allowing time for the patient and family to adapt. We liked to travel—and we still can. We traded our large 5th wheel camper for a minivan and stay in hotels. When my husband’s driving became scary, I took over that chore, BUT we still travel. With similar adjustments, we still eat out and fish and go visiting family and friends. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I often have to remind him (and myself) that the disease hasn't stopped us from doing anything we love to do.”
And that’s where the attitude comes in. Lisa asks, “Does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee?” She says she knows that eventually his condition will stop their travels and evenings out with friends. “But until then, we adapt and enjoy every moment we have.”
When the doctor recently asked Lisa's husband how he was doing, he answered, "I think I'm doing fine." He said it with a smile and he meant it. And that's when she really got it. Although the disease had progressed from their last appointment six months ago, they really WERE doing fine, adapting and moving ahead with life. Lisa ended with, “In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it?”
What more can I add?
Thank you, Lisa, for letting us use your insightful online support group entry.