PSP Association

Learning Curve

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!

Susan Voss


4 Replies

Hi, Susan. Sorry (sort of) not to have relevant experience to offer. Just want to say I sympathize. It sounds like a very upsetting situation . The only thing we can be sure of is that whatever we are going through, it is a stage, and it will pass. Good and bad! Hang in there. Easterncedar


Hi Susan,

Sometimes my husband won't remember how to use his cell phone. He will pick it up and not know how to make a call or answer it. Other times he can use it just fine. Same with the computer. He does have tremors sometimes, but that usually isn't the reason for his difficulty in using his phone. He also sometimes have problems with distinguishing what is real and what is not. He thinks people have told him things or have done things that they really haven't. It's not all the time, but it does happen. He is at home with me, so I have a little more "control" over his world, but that doesn't always help either. There are times where I have to talk him back into bed in the middle of the night because he thinks it's morning, or he has to go to work (which he hasn't for about 5 years). It's not an every day/night thing thankfully, but it can be exhausting. Maybe your husband feels safer and trusts hearing you rather than the people in the care facility. How long has he been living there? This really doesn't give you the answer you need, but hopefully this will pass for you and your husband.

Take care of yourself,



Hi LynnQ, I helps alot just hearing that someone else is experiencing similar symptoms. My husband has been in the Asst. Living for 3 months. He has been sick for over 5 years but just recently saw the Neuropsychologists and was diagnosed with Frontotemporal dementia. Now they think he was misdiagnosed for years with depression. Although he received some drugs related, it feels a little frustrating to just be finding out something that has been happening for 5 years or more. We don't have a guideline as to when it really started so we can't even guesstimate his longevity. Yesterday was so bad I pulled out the Advanced Directive because he hadn't eaten, drank anything or slept for at least 3 days. This morning he almost sounded "chipper" until he started obsessing about his menus for the week. Doesn't take much. Thank you so much for sharing and you helped a whole lot.

You take care as well. Being the caregiver at home is awfully tough. I did it for the last five years then got sick myself. He is where he needs to be at this point but I still feel guilty about it.

Susan V


You shouldn't feel guilty, you are still taking care of him. But I do understand the feeling. I am able (and have to because of needing insurance) still working, and even though my husband can still stay home, I feel guilty that he is struggling most of the time with stuff he does when I'm not there. Not sure how much longer he will be able to say home alone, although this weekend he did pretty good. Such a roller coaster ride! I'm glad you have found a place you can have your husband live. Sounds like he's still getting used to living there. Hopefully when he gets better acquainted to his new living environment, (who knows how long this will take) things will settle down a little. Your right it sounds like he is where he needs to be. It's hard with these diseases what the future will bring.



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