Is there anyone who participates in the forums who is familiar with Lewy Body Dementia?
My husband, who is 73, was diagnosed 18 months ago with mild-to-moderate Lewy Body dementia with Parkinsonism. He's had wonderful care
from neurologists, and pain management center doctors. He's been introduced to physical and voice therapy, but he won't do them consistently at home.
While I've been working continuously ever since on matters legal, medical, caregiving, transportation, managing the household, etc., as his disease has progressed, he has progressed from being willing and cooperative in his care to being combative and suspicious. I discovered also that he's not been taking some of his medicines as directed.
The combativeness and suspicion are directed at me because I'm here. I've had to be deceptive (i.e., Little White Lies) at times. The guilt is taking it's toll.
I've spent more time with doctors for my health than ever before. I am ecstatic when my husband has a good day. I know that the good days are precious and God wants us to spend time with each other while we can. My fear is that I'll become too ill to care for him properly.
In our area (Denton County, Texas) there is no support specific to Lewy Body dementia (LBD). I recently spent some time investigating dementia-care assisted living communities. There just aren't any communities specific to his needs, although several managers at two communities have tried to convince me that they are experienced with the specifics involved (even though they have no residents currently with LBD). I guess that a good dose of scepticism is allowed? I'll be continuing my due diligence somehow.
I don't feel as though I'm alone though. The Lewy Body Dementia Association is a wonderful resource. There is a LBD support group which meets monthly in Richardson, Texas. It's a lengthy drive but worth it for the benefits and resources I've received.
Does anyone have suggestions for healthy caregiver coping mechanisms? My husband does not need to be placed in a dementia care community today. It will have to happen at some point, and until then, I'm his caregiver.
Current issues: how to convince him that he should not be driving; he will not allow home health into the house; convince him of the necessity of exercise and eating regular meals (he's losing weight). Anyone out there??