Even Janet was upset this afternoon as I arrived to find her sitting in the living room saying “I’m trying to have a nap”. She knew she was supposed to be napping before I said anything and that’s a really good sign. Why she wasn’t, I don’t know as all the staff were in a meeting and I never saw the day shift folks at all. We need to develop a strategy that gets Janet some afternoon rest without me being there to put her to bed. We especially need to at least put her in lounging mode if she’s going to be sitting in the living room. She was not again today and because I was unable to see the daytime crew I have no idea how her morning went.
We had a lot happening starting with a visit from Courtney so I gave Janet a choice of trying to power through or have a power nap before things got started, she said it’s probably best to have a nap. I laid her down and left her for forty five minutes and when I returned she was awake but I think she slept a little. We made our way down to the living room and Courtney arrived to a big smile from Janet. Just before our scheduled Skype chat with Leslie a little while later, Connie stopped by wanting to observe Janet taking her meds with only water to see if she can do it. Of course she can and Janet also demonstrated her prowess at drinking with a straw. Those accomplishments mean Janet no longer has restrictions on her diet other than to not be alone when eating and to watch the amount of food she puts in her mouth. Connie spent over half an hour with Janet catching up on things then Brian came by to chat about the new wheelchair. I’m pretty happy with it and Janet seems to be as well. We will try a few minor adjustments over the next week or so then probably buy one. I think we get a choice of colors! At one point during this impromptu meeting we had Connie, Brian, Garrett, Courtney and Chris all visiting Janet at the same time. What a celeb. Chris was more visiting Courtney as he swims at the rec centre pool that Courtney guards at and has been hoping to meet her for a long time. Unfortunately because of all that we missed the chat with Leslie but at least there will be more to talk about when we do connect. Once all the commotion ended we were able to have a more private chat with Courtney and she gave us the official word that she and Mike are getting married this summer. When Courtney told me she was coming out to talk to us I asked Janet what she thought she wanted and she said “she’s getting married”. Such a mom. We are excited about this news and if we still have our house in August look forward to hosting a small ceremony there.
The dinner menu tonight included BBQ steak and Garrett coached Janet through putting some spices and BBQ sauce on hers. He then took her out to the BBQ and had her grill her own steak. She did amazingly well and the steak turned out perfect. There’s a video of Janet flipping at the grill on Keek if you interested. @larrylatour
The flipping didn’t end after the steak as Janet totally flipped out about going to the gym. She was tired from not napping but I didn’t think she was that tired. I tried every motivational tact I could without success and finally just turned her over to Garrett and said see you in a bit. Other than being tired I can’t explain the tantrum Janet had tonight. She never gives any constructive reason for not wanting to go to the gym and gets herself so worked up it just drains her. By the time Garrett took her she had calmed down and ended up doing a good full workout and sneaking up on me all happy upon her return. One common thread in our discussions is she doesn’t give herself much credit for achieving anything and thinks the stuff she can do is “no big deal”. I think it’s time for a chat with the neuropsych team.
I read some of Slow Dance to Janet before bed and even through her yawns she managed a laugh and some acknowledgements of similarities to her situation. She even was still coming up with well thought out comments and statements in between her bouts of Klingon which started to appear as she grew more tired. She was quite confused during teeth brushing time and was virtually asleep before I could turn the lights out. Tomorrow may be a repeat of today as there will not be time for an afternoon nap between swimming and a doctor appointment. It is music night at Connect tomorrow so if Janet does well in the pool and is tired like tonight I may let her skip the gym. Don’t tell her that.
Praying for lots of rest tonight and lots of energy tomorrow.