Living with a Lewy Body Dementia patient, 24/7/365 must be a very difficult burden to bear. We see things different that most. If our care taker is quiet, sullen, preoccupied, we see that as anger towards us. We must know where our care giver is every minute of every day. We want our time schedules met. Meals on time. Television shows on time. LBD patients become very demanding. I know because I am.
That's right, I did some self-evaluation and realized that I am demanding. It is not on purpose but it is there. Again, not our of meanness but out of need. My wife is my security. She is the one thing in my life that is not changing! But just the same, she is continually the care giver. And I see where my being dependent on her could drive her crazy!
The question is, how do we deal with this issue. Well, now, it may not have an easy solution. After we move into the Continuing Care Retirement Community, I think the opportunities will be increased for me to have activities out of the house, that are safe and controlled. It is no longer a good idea to let me out alone!
But, just the same, I see the stress on my wife and I worry. I know that other caretakers are impacted by the same stress and fatigue. I would be interested how those people deal with this issue.