Hi iv just read your post after not being on here for a long time & it’s exactly me. My husband has Parkinson’s & now just diagnosed with Lewy body dementia. I was finding coping very difficult due to changes in him. I got an emergency Parkinson’s appointment where he was diagnosed with LBD. The medication given for this has made such a difference. He’s interacting more, he’s more alert. Don’t get me wrong it’s still hard but I feel it’s helped. He still gets up 4/5 times a night for a wee. This is a very difficult manoeuvre as he goes rigid getting in & out of bed. I have to help & he uses a jug at side of bed otherwise we would be there all night getting to bathroom. Routine is the thing the helps his meds are in a pill pack which is great but he needs prompting. Food needs cutting up in a dish so he can chase it round the bowl. The list of help goes on. I got a personal assistant for him once a week for couple of hours to give me time out. He didn’t want carers so this is a compromise. He has walker in the house & wheelchair out. Another difficulty getting in & out of car. Physio helped they learnt him to say big steps when he freezes. Telling the brain what to do. It works sometimes so that’s good. This blooming disease is unbelievably difficult but it’s here & we have no choice except muddle through. Enjoy the odd times they feel there back. Good luck
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