The Whitworths of Arizona, bringing science to you in everyday language.

Friday, November 1, 2013

Two of a Caregiver's Best Friends: A Journal and a Support Group

“Now I’m supposed to keep a journal?” Claire, a fiftyish woman with a harried look asks incredulously. “As if I have time for that when I’m doing all these other things I have to do. I don’t understand why Leon can be so like a two year old, getting into everything and so dependent I can’t even go to the bathroom alone and then when we go to the doctor, he’s just fine. No wonder the doctor doesn’t do much. Why does Leon do this? I get so mad at him. Why can’t he be that sharp with me? Is the doctor more important to him than I am?”

“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”

Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:

  • She takes Leon’s fluctuating cognition personally. This is a hallmark symptom of LBD. A person can carry on an intelligent conversation one moment and be utterly confused the next. (See the x blog for more about this symptom)
  • She doesn't understand the special “Showtime” aspect of fluctuating cognition where a PwLBD will act with clarity with someone other than the caregiver then revert back to his normal confused state when that person is gone.
  • She still believes she should be able to reason with Leon.
  • She doesn't understand that Leon will remember the things in his reality, especially the negatives like her “infidelity”, easier than he can those in her reality—the nice things she does for him.
  • She doesn't understand that her agitation just makes things worse because he will mirror the intensity of her response.

Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.

Their suggestion that she keep a journal is right on. She can use it:

  • As an on-the-spot record of Leon’s fluctuating behavior that she can show to the doctor or family members to support her own words. Videos and audio recording work well for this too.
  • to keep track of those behaviors like Leon’s delusions of infidelity so that she can discuss them at her support group. That way she can learn better ways of dealing with these than becoming hurt angry angry.
  •  to track Leon’s medications and their results. Because LBD is a progressive disorder, a person’s reactions to drugs will not necessarily continue to be the same. What once worked may now make symptoms worse, or may stop working at all or…
  • to vent in a safe way—and perhaps be able to keep her cool with Leon, thus lowering his stress level.
  • Can you think of other reasons for keeping a journal? I’m sure there are many!
Read more about the benefit of support groups in the 10/1/11 and more about fluctuating cognition in the 10/26/12 and 5/12/12 blogs. You can also read about LBD in general in A Caregiver's Guide to Lewy Body Dementia by Helen and James Whitworth. You can buy this book and many other LBD related books from our online store at

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