Hello all. My hubby has been diagnosed with bvFTD and we believe that the last five years he has been misdiagnosed with depression. He is at the 5-6 deterioration level and we just found out last month. It answers a lot of questions but what we might have been spending time preparing for is now upon us full force. Does anyone else have a problem with cell phone usage? He is in an assisted living facility and they have them wear alert buttons but he refused to call his care partner and instead calls me day and night. He claims it takes him 30 minutes to get the phone to work and with the tremors, I guess that is sometimes possible but often he will call me, then call me right back several times in a row so..... He has now refused to go to bed for three nights. He says they made an announcement that he couldn't go to bed there so he insists on staying up. Often (he takes Ambien and Valium as well as regular night meds) he will fall asleep sitting up and then will call me thinking it is morning and is totally confused. He will not listen to any of the care partners, including the Wellness Director and the Executive Director who assure him they are not legally able to tell someone when they can or cannot go to bed but he refuses to believe them. Our Neurologist yesterday went so far as to write an order on a prescription pad for him to know is in his records that he is to be allowed to go to bed every night and sleep all night but he says the doctor is an egotistical ............ and you can't read his writing anyway. Has anyone else had experience with these types of situations? I have found a table phone with just pictures and a way to block any other calls but I have to see if I can pay for a phone line to be put into his apartment at the care center. That way at least I know he can get ahold of me right away although I am tempted to remove all phones from him. Problem is he fell getting onto the bed last night and instead of using his call button, he called me and then got mad when I called the care partner to check on him.
Any shared experience would be so helpful. Thanks everyone and keep your chins up!