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.


  1. oh ya, so many people post to me about the latest "cure", oils, or diet thing for alzheimers. My mother ate only organic whole grain foods-no sugar or white flour, no pasta or red meat and exercised and walked Every Day. She got alzheimers back in 2006 and still did all of that.
    I dont get mad, I just tell them the above... (they are just parroting the latest dr oz B.S. really ) lol

  2. One size does not fit all; Lewy Body Dementia or other Dementias. We don't know the causes of many diseases -- it could be the air we all breathe, for that matter. We're just beginning to understand Genetics. People focus on their own lives, their own battles and their own successes and many feel the need to comfort themselves and even convince themselves what they're doing is the best, the right way and perhaps the only way. Care Giving for someone you love is highly emotional, physical and psychological. The next time you hear someone tell their story, remember, it's just like childbirth stories, stories of Cancer and other disease survival -- it's a personal telling of their experience overcoming or getting through or past very difficult times. They need support and reinforcement of their actions and beliefs even if you disagree; they need love, compassion and support. Our journeys are our life stories and many are filled with great challenge and concern. And, thanks, Joy,for mentioning my blog, lifetimesthreelivingwithlbd. Even though my "shift" as caregiver for my Mom with LBD and my husband with MRSA and many complications has ended, not a day goes by that I don't consider what needs to be done, what can be done and what should be done about LBD and other Dementias and for Seniors who must live in Long Term Care Facilities with the challenges they and their families and loved ones face coping with nonsupportive, noneducated and noncaring (sadly) care giving and legislation that isn't focused on the challenges we're facing as an aging society. Yes, I've seen good care giving and good facilities but they're few and far between in my experience. So, remember, it isn't just the personal caregiving for LBD and Dementia, it's the LTC's housing and responsiblity for daily living where real discussions need to be opened and ongoing. Let's share what's right and definitely what's not right about caregiving that's basically out of our hands and entrusted to others. Gen X, Millennials and Baby Boomers are all in this together as we move through the aging process in our own time.

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