Nap time was late for Janet today. She called me at 2:40 to say she’d finished her workout and was going for a nap. There was no particular reason for being so late and she didn’t even do all of her gym activities, everything just took a long time to get done. There was an opportunity to go sailing this morning but Janet turned it down thinking she’d only have to do all her other stuff later in the day. When I explained its OK to do different things once in a while and not do every single regular activity, a light seemed to come on, so maybe next time she’ll say yes.
Janet was ready to get up when I arrived and she asked to get her bike ride over with. The walk to the gym was not Janet’s best but she did it then put in a really good bike ride. The walk back was better but she still seemed a little off so I let her hold my hand all the way to her room then down for dinner. Seeming a little off was an understatement after dinner. Janet’s chore of the day was to empty the sanitizer and put away the dishes. Last time she did this it went really well, tonight she got it done but under major protest and with a couple pretty good meltdowns. Not sure why, but it seemed like her confidence level was way down and her balance a little off. Her right leg action appeared to be coming much more from her hip than usual too. The freestyle walking trip to get her meds at the end of the evening was pretty good so I’m putting it all down to a bad day and hope that a more relaxed day tomorrow will rejuvenate her.
Since its Janet’s birthday next week and Humberto’s on Sunday the house is having a picnic for them in Vernon tomorrow. Janet doesn’t think it’ll be fun but I know Jess made a carrot cake for her so that at least is one good thing.
Praying that Janet has a solid night of healing sleep and wakes up tomorrow with a positive attitude and a willingness to fully participate in everything she’s asked to do.
Jess reports Janet had a very busy first part of her day, doing lots of work in the gym, Speech with Mary Lou and helping Jess make biscuits for tonight’s dinner. Tez mentioned he wants Janet’s work on the Shuttle to focus on her right leg as she really needs to build strength in it. She did the full workout as well as lots of sit to stand exercises. Janet said she didn’t help much with the biscuits but it sounds like Speech was incorporated into the process as she did say she read the recipe out loud. There hasn’t been much change in Janet’s volume level but the memory keeps improving even if she struggles to find the right words. Tonight she retold the story of the lunatics at the London Drugs parking lot on Monday correctly stating “we were only in there ten minutes…” then carrying on with a somewhat jumbled but accurate description of the encounter. Pretty impressive I think.
I snuck up on Janet as she wheeled from the living room and followed her to the kitchen sink and almost out the door to the patio after I got to Connect. She couldn’t quite get the door open herself but gave it a good try. We had a nice talk in the sun for a bit and since she had just gotten out of the Standing Frame decided to do a Shuttle session then hit the road for home as Laurel and Raj were coming in tonight for a brief visit. I didn’t get the sense that Janet was particularly tired prior to getting to the gym, that sure changed in a hurry though. My original thought was for her to have a rest, dinner, gym then go home. Should’ve stuck to that as Janet had enough of a meltdown in the gym to warrant a time out for an hour after Garrett managed a little stretching with her. She definitely was tired as she slept for almost an hour but I’ll take some blame for the meltdown for not being focused on her when she was on the Shuttle. I need to ignore my phone when working with her like that.
Janet made a nice recovery after her nap. She of course said she wouldn’t sleep and when I checked her after thirty minutes she was right out. We stopped at Save On and got a bunch of groceries on the way home then built our own sandwiches for dinner. I’m having to help Janet less and less with this sort of thing as long as we can take the time needed for her to figure things out. I’ve never had her try the squeeze bottle of mayo before but she quickly figured out how to open it, she just isn’t strong enough to do it completely. Before Laurel and Raj arrived we had time to sort through a few more boxes from under the stairs and these made Janet a little sad. Most were filled with stuff she was saving for the possibility of her opening her own pre school one day. She repeatedly said “I guess I’ll never be a pre school teacher again”. No tears but close and I really felt for her but I also know its really good she acknowledges things like that and it reminds me of the need to keep her contributing to our life and hers at Connect. She needs to feel useful.
Laurel and Raj arrived just after nine and we enjoyed a nice visit before bed. They are on their way to the coast for a wedding so we’ll see them for half the day tomorrow before its back to work for Janet. There were lots of positives today even with the little meltdown and Janet of course was very excited to see Laurel and Raj. Praying for lots of rest tonight and a fun day tomorrow.
Garrett and Lorne had Janet in the gym when I arrived at Connect this morning. Garrett was stretching her legs and asking her the name that family member questions. Janet was mostly laughing and calling everyone Allison. Apparently she had done well earlier with those questions and had a really good workout. She was pretty tired as we headed off to the pool at KGH and I was a little concerned as to how much energy she’d have for swimming. Once in the water she was fine. Each time we go is very different and today Janet really excelled at floating on her back. There were a couple of moments where I was balancing her right side with just one finger and letting go briefly and she would float. Trouble is as soon as she realized I wasn’t holding her she’d panic a little and sink. She was much more aware of her body in the water today and took some strong steps when we tried walking. Janet didn’t have the stamina to go the full length of the pool today but managed more than half a couple times. Her right leg was swinging pretty freely today and she didn’t seem as able to control it as last time. During our second half hour, where we had the pool to ourselves, I put a weight on her right ankle and that seemed to help a little when walking but made no difference in any of the standing exercises. For the most part I focused on trying to let Janet get more comfortable in the water and figure out for herself what she needs to do to stay afloat. I think we made some progress.
On our way out of Rehab we had a nice chat with Cathryn, Janet’s former ABI Coordinator. I also got a quick question in with Dr. McCann who happened by. I asked if the reappearance of the occasional incident of clonus in Janet’s right leg was a good sign or a bad one. He said it’s not likely anything to worry about but keep and eye on it. So far it is occasional and Janet laughs when it happens and says it doesn’t hurt.
We got home for lunch and Janet helped make herself a wrap then asked to look at pictures of “our” trip to California in 2001. We had talked about Disneyland the other day and she remembered me telling her she’d been there with me, my parents and my kids before we got married. She couldn’t remember the trip at all but remembered to ask to see the pictures. High five! There are no digital photos that I could find of the trip but we do have a DVD that has a few shots of Cam and a glimpse of Janet’s head and Laurel as well. I’ll have to dig around to find some prints to show her as she didn’t remember anything from the video as it’s ninety nine percent my kids. Little did I know then.
Janet was pretty tired as we drove to the doctor’s office as there wasn’t enough time for a nap today. We had a good chat with her doctor who promised to find out what the deal is with getting in to see the neurologist. Janet’s Dilantin levels are a little higher than last time but nicely in the therapeutic range and I believe these numbers are more accurate than previous as Janet is taking the capsules now instead of the liquid, a much more accurate dose. I told the doctor that it’s still a battle getting Janet to drink water and she advised not to make it a big issue. As long as Janet is peeing frequently and the volume seems fine leave it at that. There are more important things to get Janet doing. Good advice.
Dinner was ready when we got to Connect and Janet was hanging in there pretty well after a few minutes of shut eye in the car. We went to Music Night after dinner to listen to Brian and Kevin play guitar and sing. Janet really enjoyed singing along to some of the songs and said “it was more fun than I thought it would be”. There’s a video on Keek. @larrylatour . She asked to read for a little before bed then did a really good job with her nighttime routine. I thought we’d go out on our usual happy note but Janet got all upset about not having had a BM for a while and getting some help with that in the morning. No matter what I said she just got super upset and she was really over tired by this time. I ended up laying in bed with her for a good half an hour before she calmed down and went to sleep. Some of the things she said during this meltdown were old Janet things for sure and I haven’t seen them since this started. Not sure if it’s good or bad but gives me another reason to chat with the neuro psych team soon.
Praying for a peaceful sleep tonight and a bright day tomorrow.