Thursday, October 22, 2015


I've just started following a Lewy Body dementia patient/caregiver group on Facebook and, although I am a member of Memory People, another dementia group on FB (doing great work, by the way), this LBD group is more specific to what I do and see and has allowed me even greater access into regular caregiver's experiences. People are dealing with heart-breaking daily events and challenges and are doing their absolute best in trying circumstances.

A very energetic and angry series of postings caught my attention the other day and it made me think yet again about how regular people treat caregivers and caregivers treat caregivers. The post-er was incredibly angry at what she perceived as yet another person commenting on her life, and that of her care receiver. Apparently this person had listened to her story in the store; the caregiver's older mother had LBD and was suffering. The listener commiserated but said she believed that her older mother was doing so well into her 80's, sans dementia, because she had kept her mind busy, had been social and engaged with others, had kept healthy with her diet and exercise, and was involved in social and domestic projects.

The caregiver was furious, not only at what she felt was a possible condemnation of her mother's habits - or her own dedication to her mother - but at the fact that she hears similar comments all the time; that if only her mother had been social, or mentally busy, or whatever, she would have been fine. That it was, in fact, her mother's fault. Many, many caregivers agreed and expressed their frustration at people - and the media - assuming that all of these poor people with dementia must have not kept their minds busy, or eaten the right diet, or did puzzles, or whatever. They commented on all of the incredibly smart people in their lives who were rocket scientists, engineers, writers, etc., who still had dementia.

I really understand their frustration. While it's true that keeping your mind busy and engaged, and eating the right foods, into your later age is helpful, its not a guaranteed ticket to non-disease. Dementia strikes the incredibly intelligent as well as the average, man and woman, young-ish and old. However, my dad, while an amazingly smart engineer, was also depressed, anti-social, and withdrew into his own world - so there is something to be said for the theories about keeping oneself engaged.

So what I guess I really want to advocate for is tolerance on both sides; caregiver and random stranger. I know it is so hard to have your life and work as a caregiver commented on by people who really have no idea; so maybe random strangers could think twice before making those comments. We all have the instinct to help by telling people what has helped us or people we know. Believe me, I've been the recipient of everyone's treatment for Rheumatoid Arthritis, and I'm sure I've turned around and done it to others. In Bereavement training, we learn to help people in a group say things like, "What worked for me is..." instead of, "You should..."

And, caregivers, maybe you could take a moment to be patient and educate these random people instead of getting so mad. Who knows, one day these people might be dealing with the same problems as you, and a little help from you years earlier might help.