NJ Archives - Lewy Body Dementia Association

LBDA Support Services virtual offerings for those diagnosed with LBD, their care partners, and those bereaved

South Jersey Lewy Body Dementia Caregiver Support Group

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6 hours ago

"After months, my dad's hallucinations worsened to the extent he did not want to go out or be left alone. His sleep became erratic. It put a strain on my mum and the whole family. However, after a couple of non-starters, we got the right mix of medication and joined a support group. We got in touch with local groups who welcomed him to attend their activities – there was walking football, a putting group, and a general chatting group. This group allowed him to mix with others who had LBD and participate in activities that mentally stimulated him. Also, it gave my mother a break.

Sadly, as time went on, his health deteriorated, and he did not sleep at all at night. He preferred to nap a lot during the day. Nothing we did could turn this around. He also could no longer dress and needed help to go to the bathroom. There was always the possibility of accidents during the night.

Despite this, I am proud of my mum for keeping my dad at home for as long as possible." - Pam's Story

To read more of Pam's story, follow the link here>
ow.ly/M0sU50FO6dB ... See MoreSee Less

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I hope your Mom has been able to get over caregiver fatigue and guilt. I know it took me a very long time for me with my dad.

I do not understand why specialist cannot see when someone has LBD...I also told them that's what I thought my husband had!! He had ALL the symptoms!! He suffered because he knew he was seeing and behaving abnormally!! All b I did was read about symptoms!! He was my best friend and husband for 51 yrs!!

Your story sounds much like ours, Pam. It was heartbreaking to watch my Dad go through LBD. Unlike your Dad, mine didn't want to get involved in activities so it was so hard on my Mom. She was his primary caregiver (and we all know the stresses of that). I'm glad we have this group so we all know we're not alone. <3

Lewy Body Dementia Association

1 day ago

Chris Schwilk and Don Kent, two of LBDA’s passionate volunteers and LBD advocates, shared their initial LBD symptoms with Being Patient. The article, ‘How I First Knew Something was Wrong:’ An Oral History of Early Dementia, reveals how variable initial dementia symptoms can be.

Read more> ow.ly/s8Nm50Est8J. ... See MoreSee Less

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