Last Monday our specialist confirmed what I had been thinking that my husband has Parkinsons with Lewy bodies. He has been getting more confused over the last few months, sometimes switching from lucidity and confusion several times during the day. Nights are dreadful as he is no sooner put into bed than he is up again, over and over again and last night I don't think he got any sleep at all. He has a compulsion to get up and once he came down to the sitting room and put on the gas fire and then went upstairs and forgot. He has done this once or twice before. We are so tired - sleeping pills make him worse. Excelon patches were tried and he reacted very badly to them too. After 4 days of the patch, he watched something on tv about old people and scams and suddenly he thought it was happening to him and started panicing about his bank account etc and as I run all that he then accused me of being in with the baddies! An hour and a half of your husband ranting at you is quite a stressful experience. He also has a claw hand so can only effectively use one hand which makes toileting very difficult and he needs help every time so I can not leave the house for more than an hour and when I do I am in a hurry to get home. I have employed a night carer for one night a week but this week my husband overruled her and insisted she come and wake me up to go and see him. \i am starting to employ carers for a couple of hours here and there just so I can keep up with my two main hobbies, ie singing and french lessons but cannot find help at the moment to cover my keep fit class or going to church. I am just having a rant because noone wants to know all this but I shall be able to look at this from time to time and hopefully hear from others who are having a similar or worse experience. Thank goodness I am a tough old bird (69) and also lack of sleep makes me able to eat what I like without putting on weight!
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