I know pretty much zero of my FTD spouse friends are surprised even a tiny little bit, but the activity logs show that he leaves his room between 20-65 times in a shift (varying between 4 to 8 hours a shift) for the aides. This is approximately every 10-15 minutes the entire shift long. Imagine that...having to get up and follow a grown man around keeping him from entering everyone elses' room every 10-15 minutes for 4-8 hours. As an aside, I know you probably wouldn't believe it, but it was even worse than that at home. He would do the same loop every 30 seconds. All.Day.Long. Bedroom, bathroom, kitchen, couch, kitchen, couch, bathroom, bedroom. Wash, rinse, repeat. He would sleep for maybe 4 hours a night, after sun downing for 4-5 hours and then sleeping from 10pm-2am and then he'd be up to start the loop again.
They've limited Mark's 1:1 aides to just a handful of them instead of the rolling rotation like before, but we're looking at ways we can help to calm him more. Some suggestions I had were that I get him a new smartphone (he lost his over a year ago, and I kept thinking we'd find it) so he can play games on it, as well as a smiley face chart so he can select which one he is feeling each day. The thought behind the chart is that he may not be able to verbalize what he's feeling, and, as I've noted over time, you could ask him a question that you know the answer is "yes" to, and he'd say "no". This gives him another way to describe how he's feeling. This thought was something I gleaned from the videos they gave me at Mayo Clinic. Certain parts of his brain (say, that could associate a face with his feelings) might still be connecting while the parts that form verbal cues would not be. Another suggestion was to have some "snack" cards that he can select what snack he wants from the pictures. My thought behind that was that he may just want something different and not know how to verbalize that.
I also asked if we could try to set up a regular video chat with him every evening, as that tends to keep him in his room for longer. We try to chat with him multiple times a day but he seldom answers, so sometimes it goes days between our chats. I can still check in on him with the video surveillance camera that I have, and I can talk to him through there, which I do as long as he's not sleeping, but it's not nearly as good a picture, and it's harder for the kids to chat with him that way.
Speaking of videos, his assisted living facility put out a really cute music video featuring the residents, and Mark was on it. He also was featured (see below) on their Facebook page for Red, White and Blue week. It's so good to see him being involved, and I just love how great the staff and aides have been with him and working to make this whole quarantine thing as enjoyable as possible for the residents.
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