My husband was diagnosed with Lewy Body about a year ago. It started slowly, with shaking hands. When it started to effect his walking, it progressed faster. He now needs 24/7 care, not to be left alone. I have the most fantastic daughter-in-law who helps me cover for him, when I have appointments. His dementia is pretty bad, not knowing where things are or where to put them. He bathrooms himself, can take his own breakfast, can do a little buttoning, but I do most of his dressing. He sometimes needs help getting out of his hospital bed, which hurts my back. I am not in fantastic health, so it is really hard for me. When I see him getting in bed, I cry, thinking of how strong he was (could tear a phone book in half) & now to see him struggling to get in to bed is very depressing. To know that eventually he will need a wheel chair, not being able to walk has me worried & we'll probably have to find a facility that can care for him. He is a Holocaust survivor & it doesn't seem fair that he's now been hit with this. He tells me that this is worse than the Holocaust & I know he went through Hell during the war & was also very young. He is 82 & I'm 76.
We are getting some help from an agency, having a man showering & shaving him 3 times a week. We also have some other hours covered to give me some respite to get errands done without having to take him with me. I need some encouragement from caregivers, who have been doing this for longer than I.