The transition back to “work” for Janet seemed to go real well as when I got to Connect late this afternoon Janet gave me one of her best daily run downs ever. She seemed very bright and her memory was working almost shockingly well. According to her, all her exercises were done and the report she gave me was so good I didn’t feel a need to verify it.
By the time we were done talking and Janet was up and dressed it was dinner time. We ate outside in the beautiful 28 degree sunshine while the rest of the house sat in the freezing cold air conditioning. They think we are crazy. I think Janet may come home sooner if Connect is going to be so ridiculously cold.
In keeping with her increased brightness, Janet, on a number of occasions started walking around her room unassisted and without being asked. Her confidence level has never been higher I don’t think and it translated into me sometimes not even watching as she moved about her room. Considering she barely freestyle walked at all in Ottawa I was really surprised she attempted and did it so much today. Near the end of the night she relied on me more, even to the point of refusing to go to the kitchen from the living room for a cookie. Because I wouldn’t hold her hand she turned around in the middle of the floor and walked back to the couch, turned and sat all by herself. She thought she was depriving me of something I wanted her to do when in fact she practiced turning and sitting without hanging onto anything. I could not have gotten her to do that voluntarily and may have discovered a new strategy.
We spent some time reading and catching up on emails. Janet did a good job on all fronts especially typing where once she got warmed up was even hitting the space bar without prompting. A new thing for her.
The wedding of course is top of everyone’s discussion list with Janet and she was thrilled to sit and share some pictures with Chelsea and Karl tonight. She gets a little excited when doing things like that and sometimes skips over some detail she ought to point out and forgets names but all in all she did a good job describing each pic. She very smoothly recounted the great job Courtney did with her hair and laughed along with the rest of us at the pig tails that were put in to hold some hair out of the way for a bit. It’s nice to hear Janet laugh at things like that instead of commenting on how “awful” she thinks she looks.
My lunch hour phone call to Janet today caught her full of energy and talking really loud. It wasn’t just her phone, she was amped up, giggly, loud and confident. Nice to hear although she still has challenges in bringing out key words.
The Janet I found when I got to Connect later on was tired and sapped of energy. She said she slept but it didn’t look like it to me. There wasn’t a lot of motivation to do any exercise but she was happy to go do her duty prepping dinner as indicated on her daily schedule. Chelsea had her helping to make breaded pork chops, rice and corn on the cob. Janet thought the whole process was “ridiculous” and it was a little chaotic and unorganized but still good she helped.
With time to wait before the dinner was served I encouraged Janet to go for a bike ride hoping that would perk her up a little. She said she was tired but turned in a very respectable ride and it did liven her up. Janet walked well from her room to the dining table and then back to her room. She complained a little of a sore right foot again and we’ll keep an eye on it. It didn’t seem to bother her later in the evening, especially when she free walked from her bed to her room door and then from her bed to the bathroom. I didn’t even ask her to do that one and she made it the whole way without grabbing me once. High five!
Respecting her low energy levels we did a bunch of Speech type work tonight that included reading, typing emails, voicing emails and a Skype chat with Laurel. Turned out to be a good use of time as Janet did well with all tasks.
The results of Janet’s blood work were emailed to me tonight and the Dilantin is still at the high end of the therapeutic range with no reply from the neurologist yet. An answer soon would be nice as I’m starting to see some signs of side effects with Janet or maybe I just think I am. I do think it’s strange the levels are so high all of a sudden but at least they are staying there now.
Janet was in bed by 9:30 and really wanted me to read but by 10ish she had fallen asleep numerous times and seemed out for the count so I said goodnight. Praying for a night of rejuvenating sleep and lots of energy for tomorrow.
Its a good thing Janet got lots of rest over the weekend as today was a big work day for her. Jess had her in the gym and walking this morning. Wendy had her and the other residents filling out daily schedules that they need to follow and check things off as they complete them. Janet was not thrilled with that idea as she doesn’t “like people telling me what to do”. When I explained it was a way for her to map out what she had to do each day she was more accepting of it. All this info is on Janet’s calendar on her iPhone so I guess its time to teach her how to access that better.
Nap time was without sleep again for the most part and Janet admitted to being “out of it” as I helped her get up. To her credit she suggested doing something active to get herself going again so off to the Shuttle we went. Janet is slowly getting stronger and more able to control her right leg. The increases are minimal but there. Her effort was good and overall she showed stronger than a week ago. It took a lot of convincing but Janet got onto the Tilt Table next and tolerated it for thirty minutes. I was impressed by her ability to stand on her right leg for a count of four or five and pleased that she’s starting to recognize the benefits her left leg receives when she shares the load with the right.
Karl’s chicken curry was too spicy for Janet so we switched dinners tonight then started the real work, walking. Janet is pleased with her new shoes and I notice more stability for the left foot with them and we had a nice warm up walk from the kitchen to her room. That used to be the absolute extreme for Janet, now its a warm up. After a break and chat in her room we headed back to the kitchen to ask Chelsea if she would assist with the sling. Janet was nervous about doing this but is starting to understand the safety aspect of it and I think thats what allowed her to agree to do it tonight. Compared to her first attempt last Thursday she was a hundred times better tonight. After a forced fall to better understand the equipment Janet walked around the course really well and without complaining until she got tired. Her cornering was great and as long as she keeps momentum she walks quite well. Fear still controls her a little but I saw a lot of confidence creeping through tonight. The last walk of the night came as a trip to get her meds and feeding off that increase in confidence I had Janet free walk from her bed to the door of her room. She made it half way in what was her best free walk yet. I’m excited for what tomorrow brings as hopefully Tez will work on the sling with her and hopefully I can be there.
“Exhausted” after all that walking Janet was happy to sit down and reply to some emails. She typed one to her mom with very little help from me then voiced a couple of others as the concentration it took to type wore her out a little. Or maybe a lot as she was asleep before ten as I read to her.
Praying for continued improvement in Janet’s walking abilities and the confidence to keep working hard.
For quite some time now Janet has been getting increasingly resistant to the idea of going swimming each Thursday morning. She “hates” being cold and also doesn’t like all the preparation needed to get ready followed by the big production when finished. She was one of three residents that went to the pool this morning and only one of those went near the water so Garrett could spend the whole session with us. He got to see first hand how good of a swimmer Janet is and how quickly she gets cold, even with the wet suit. More importantly he saw how the cold affects Janet’s ability to control her legs. He agreed that other than “the outing” there isn’t much therapeutic value to the swimming if Janet isn’t really enjoying it. We asked Janet to suggest an alternative to swimming rather than just complaining about it and she wisely said she could do exercises in the gym. This is what she’s chosen to do Tuesdays instead of attending the group therapy session and I fully support that choice. That gave me justification to talk to Brian later today to suggest Janet no longer go to the pool as long as there is staff available to take her to the gym. He agreed, I told Tez and he’s onboard so Janet has been released from that “terrible” thing. The countless visits to various pools truly helped Janet’s recovery and we are blessed to have had the opportunity to work in the water as much as we did. Janet loves to swim and I’m confident she’ll be back in the water as soon as its warm enough.
After lunch and a nap Janet responded to some emails, this time electing to type them herself and she did really well, even hitting the space bar at the appropriate time a few times. She gave up a little quickly on her reading today and I had to really push her to follow through to the end. Her confidence level seemed quite low this afternoon and evening. Perhaps because of that she was very resistant to doing any exercise and we had a long and somewhat heated discussion about her situation. There hasn’t been a meltdown of this magnitude for a long time and I’m not sure what triggered this one other than lack of confidence. Janet has a hard time accepting that she’s doing well and making progress because it isn’t happening fast enough for her. At the end of our discussion she did her best one legged bike ride ever and got a great stretch in the Standing Frame.
Bedtime each night involves us praying together and we share lines of the Lord’s Prayer followed by a heart prayer that has always been at least 99% me talking. I often encourage Janet to start that prayer and up until tonight she’s only managed a few words before giving up in frustration at not being able to get the words she wants out. Tonight she said the sweetest most “honest”(her word) prayer yet, most of which centred around our earlier discussion. It was very moving and I pray she is now able to express herself that way not only to God but to me and everyone else who loves her too.
I half expected to find Janet napping when I got to Connect this afternoon but she was very much awake and was hanging out in her room saying she’d given up on TV. That’s good, the last thing I want her doing during the day is watching TV but I guess sometimes that’s the only option. She was pretty firm on not having a nap so after the daily debrief we set about to book our trip to Ottawa for Heather and Allan’s wedding. Janet helped me select flight times then she composed an email for a hotel reservation request. She did most of it typing and some voice to text which worked pretty good this time. Janet also sent a little email to Heather announcing we had booked the flights. That one she typed all alone. High five!
Brian dropped by for a long overdue chat with the highlight being he will talk to Tez to see if he is onboard with weaning Janet off of the transfer poles now that she is capable of getting out of her wheelchair without them. We are sure he will be. Janet seems a little nervous about it but Brian reminded her that if she wants to walk, getting up and down on her own will help where using a pole will not. I could tell that really hit home with her. Janet was engaged during our chat and commented after that Brian has a nice smile. Good thing he’s married.
Janet deferred dinner in order to get her bike ride in and that decision paid off with a personal best tying performance. Unfortunately I haven’t had Janet in the gym with enough energy to do any one legged biking except for a brief attempt a couple days ago. Hopefully we can do that before she comes home Friday as Tez wanted her doing that as much as possible to try and build strength.
Things were pretty quiet after dinner. Janet tried a little walking from her room and only made it into the hallway before complaining her legs hurt too much. She said she was OK standing and waiting for me to get the wheelchair but I wasn’t confident so I had her turn and walk so she could lean against the wall for the five seconds it would take me. Worked fine. Janet wanted her nails painted so I put on some YouTube and cleaned and painted her in a nice Merlot colour before getting ready for bed. The reading of Open lasted only a few pages tonight before Janet was snoring. She had a pretty good day and is really catching on to the iPad and working her way around Gmail. Her typing was solid today and she was hilarious speaking for the voice to text stuff we did and clearly is learning each time she does something. No longer is she forgetting things minutes afterward. Her long term memory is coming back too. While she was riding the bike, Stevie Wonder’s name was mentioned on the radio and Janet remembered she had gone to a concert of his back in her high school days. She was pretty proud of herself for remembering that.
Praying for a solid night of sleep and a fun day tomorrow with my mom visiting for the weekend.
Janet’s morning was rather routine today. Breakfast, Shuttle, shower, Standing Frame, lunch, then a little time with me to respond to an email from her dad. Janet hasn’t been typing on the iPad for a while and was quite reluctant to do it thinking she couldn’t. I need to keep working on this with her as I believe it’s an important skill and she’s not as bad at it as she thinks. She also doesn’t think she can read but yes she can.
Knowing tonight was the big turkey dinner for everyone connected to Connect, Janet agreed to a nap after the iPad work. I quickly painted her nails after she got up and we went to the Winfield Memorial Hall for the Fall Social. Janet went in saying “your going to know everyone and I’m not going to know anybody”. Before we sat down she had been welcomed by at least six people and had changed her tune to “lots of people are saying hi to me”. There were some little kids there and one at our table that kept Janet’s attention for a good part of the evening. The dinner was very good with Janet gobbling down a large portion of turkey. Pun intended. The staff had put together a slide show featuring all the residents from the past year. Janet said “there won’t be any pictures of me”. Two minutes in she had appeared four times with each one making her laugh. She was well represented throughout the show and wondered why because “I’m never out doing anything”. Funny how she perceives herself sometimes. Janet says she would have danced with me but “not to that music”. That’s a line I used to use while waiting for the scotch to take effect. I didn’t push the dancing on her and we got back to Connect in time to read a little, watch some TV and go to bed.
Today had a nice steady pace to it and Janet was good throughout. Praying for healing sleep and a willingness to try sledge hockey one more time tomorrow.