"Evil is merely privative, not absolute; it is like cold which is the privation of heat. All evil is so much death or nonentity. Benevolence is absolute and real." Emerson
With some types of dementia, the person with dementia has the cognitive ability to help make decisions to create the needed support systems themselves. Not with Lewy Bodies Dementia, or at least, not with the frontal lobe type we are dealing with. The hardest aspect of caregiving when I was doing it 24/7 was his 'pushing back' against the systems I thought were necessary for his safety. One time he locked out of the house a health care aide I had hired to come to be with him while I was doing a psychological evaluation. Another time a friend of ours had agreed to come visit with Dwane on a regular basis so that I could get exercise and not worry about his safety. He was so rude to her the first time that she would never come back. That was what was the most difficult thing for me when I was the hands-on caregiver. It is also the most difficult aspect for me now that he is in assisted living. Assisted living was necessary because I could not put enough systems in place to assure his safety, and he fought against those systems that were in place. He would actually say that he was "going to show you (me)" that he did not need those systems --- and that is how some of his injuries occurred. He would go out and drive a vehicle (with the paid aide unable to stop him); one time driving his motorcycle into a large hole in the ditch, just to "show me" he could still drive.
Now, in assisted living he varies from telling me he knows he needs to be there, to calling me demanding that I come get him out, that he does not need to be there. The nearly constant railing, ranting and fighting back - when he is not lucid - are exhausting. I wish I knew some good answers for helping him adjust to the reality that he needs assisted living.
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