I’ve always tried to focus on the positives when writing this blog and most days there are many to report. There are today too but the negatives outweigh them unfortunately so I’m going to be honest about that rather than sugar coating things.
Janet is not happy and neither am I. She seems to be at her wits end as far as Connect is concerned and maybe about rehab in general. Her attitude is wearing on me and as a result this was the least fun weekend we’ve had in a long time. There were a few fun times, church was good, we watched a couple of good movies and we enjoyed visiting with Cam. Janet also did a great 200 meter walk on Saturday but despite the congrats from Cam and I, didn’t really accept the fact she’d done well and was very resistant to doing it today. When she did, she kept saying “I can’t”, “I’m exhausted”, “my legs are tired”, “I hate this”, the whole way through so of course her time was way off.
We didn’t really do much this weekend and that may be part of the issue. There was a lot of down time where I had no idea what to suggest and neither did Janet and the things I did suggest were dismissed abruptly. These are the times I dread for when she comes home full time as she can’t think of anything to do and I’m tired of being the booking agent for her. I don’t want her to be over scheduled but maybe spontaneity isn’t realistic either.
To cap it off, Janet scared the heck out of Cam and I at dinner tonight by choking on a piece of sweet and sour pork. She’d put a monstrous sized piece in her mouth, unbeknownst to us, then I heard her gurgling. Janet has “choked” on things before and has always been able to cough it out reasonably quickly. Tonight as I asked her to do the same she motioned repeatedly that she couldn’t. I did some mini Heimlich manoeuvres on her and she soon brought the chunk up. Cam was on the phone with 911 as Janet cleared herself and she was fine instantly. A very scary moment that I don’t wish to repeat and Janet has already blocked from her memory. During her bedtime recap of the day she correctly identified every activity of the day except that one and I didn’t bother to remind her of it.
Where this leaves or takes us I’m not sure. It may be that Janet comes home before the end of November if she’s not going to make an effort at Connect. Maybe spending this next week at home while my mom visits and we go to the Skate Canada International competition would be enough of a respite to get her through that last month. Maybe there’s not enough to be gained by keeping her at Connect another five weeks even with a good effort. Maybe my role needs to change. I don’t know but it does seem that something has to change real soon.
Praying that tomorrow brings lots of positive energy to Janet and me.
Each weekend gets more and more comfortable at home for Janet and like she belongs here. She does and soon she will be.
Friday started off with a little haircut from Chelsea then some grocery shopping. Janet was quite chatty with Chelsea and walked from the front door of the salon to her chair all by herself. I stayed back the entire time and let Janet explain what she wanted then watched her talk more than at any previous appointment. Coincidently, Courtney was Chelsea’s next appointment so we got to say a quick hello to her as we left. Thankfully the stores weren’t too busy so Janet was able to help a fair bit with the shopping and doesn’t seem to mind it much as long as we don’t spent too much time in the cold sections. In the evening we hosted our Small Group meeting and welcomed a new person to the group so we are now six and Janet enjoyed the conversation a lot. She wasn’t as assertive as the first meeting but contributed nicely from time to time.
Saturday had Janet practicing her laundry skills. She’s getting pretty good at it and we shot some video of her today that we’ll try and show Brian this week. I can see ways he could pass her and ways not too. Hopefully Janet can check that goal off this week. We got word today that her reading to the pre-schoolers will happen on Wednesday instead of Friday. Janet is a little nervous about it now but I’m confident that when the time comes she’ll do great. I was planning on taking Janet with me to a little wine tasting event at a friends house Saturday night but access to the house was too challenging so we turned it into a Janet staying home alone experience. She was more than happy to hang out at home and I was only gone for an hour and a half while she watched a recorded episode of So You Think You Can Dance.
There was walking practice every day this weekend and Janet improved her time on the 200 meter walk each day, breaking the eight minute mark today. These walks are with me pulling her along so they don’t count towards anything Tez will grade her on. I don’t see any changes in her freestyle walking around the house though, in fact Janet might be clinging to furniture even more now.
Tonight saw the usual resistance to going back to Connect but it was eased by a small understanding that soon she’ll be done there. Praying for rest, confidence and strength.
Janet is often at her best when sharing and today she was doing her best to help some students learn about what she’s gone through the last couple of years. Carly, one of the staff at Connect, invited a few residents to visit her former program at Okanagan College so the students could get a first hand look, and feel, of some of the conditions their future “patients” will have. Janet loves this sort of thing and told me the students she spoke with were very nice and wanted to learn. She was in the class for a couple of hours letting students flex her arms and legs to experience the tone she has and talking about the positive effects of Botox.
Janet and the Therapist Assistant Class.
Carly saved me a trip to Connect by bringing Janet to OC. I met Janet there with her wheelchair and we walked home via the grocery store. She was pretty wound up after the session at the college and went the rest of the day without a nap. Needing only a quick reminder as to which buttons to tap on the cooktop, Janet made steamed broccoli all by herself as part of our dinner tonight. She did everything, including chopping it and filling water in the pot and figuring out when it was done. High five!
The rest of the evening was pretty chill as there is another busy weekend ahead of us. Praying that Janet sleeps well tonight and has lots of energy for tomorrow.
Through most of her stay at Connect Janet has never been that outspoken. She’s mostly waited her turn to say anything and often feels like a bother if she asks for something. Not today. When she called me after lunch she couldn’t wait to tell me how she’d worked most of the morning with a girl “that wants to get a job here” and they talked a ton and she read The Hallo-Wiener to her and it was good. Janet was speaking confidently and intentionally and it was clear she was on another level.
The increased brightness continued after I got to Connect, particularly as dinner was wrapping up. Big Country had just consumed a worthy meal and noticed Janet eating grapes, his favourite. To prevent him from becoming bigger the staff regulate what he eats closely and said he’d had enough. Janet, acting more like a grandmother, attempted to sneak some grapes to Big Country when no one was looking. He persisted in asking and Janet persisted in advocating for him, not understanding why he couldn’t have any. When it became apparent she and he had lost the battle, Janet defiantly told Curtis and Chelsea, “you guys are crazy”. It was an impressive display of Janet speaking her mind and standing up for someone she cares about.
Academics were the theme for most of my visit with Janet today. I helped her prep for SheLife tomorrow, Big Country even joined us for part of that, and the evening was taken up with Games Night. For various reasons Janet hadn’t been to Games Night for a few weeks so I was expecting her to be a little rusty. I was wrong. She was quite enthusiastic about it and participated well, in part I think because of the absence of one person who likes to blurt out answers inappropriately. One element of Games Night is a challenge to everyone to remember “the word of the week”. One of the residents suggested this week’s word be “morgen”, German for morning. That changed into “guten morgen”, which Janet took great pleasure in teaching everyone to say with her high school German accent. She’s still got it. Janet actually admitted afterward that Games Night was fun and told Curtis that she liked it better without “so and so there”.
With Janet being in a good mood after Games Night I got her to walk down the stairs on the way back to her room. She did great, as she did with all her walking tonight which was mostly speed walking with me.
Thursdays are always interesting for Janet, mostly because its the start of her weekend at home. Today she also got to see three doctors before getting home. Jess took her to the clinic right after breakfast this morning to get meds for another UTI. They had to wait quite a while to see the doctor there but Janet said he was nice and she enjoyed chatting with Jess while they waited as there usually isn’t time to sit and talk at Connect.
The next doctor on the list was Dr. Miller at KGH. Since Janet might be attending a Speech Therapy program there after she comes home, we took the opportunity to see how familiar Janet is with the place and if she’s confident enough to make her own way around. I pulled up to the Rehab entrance and followed Janet inside. Erica, the head nurse saw us and came to chat as we were walking in. Janet doesn’t remember her but appreciated her encouraging words. Once inside Janet got a little confused and needed a prompt to head in the right direction. Rob, the physio guy saw her but wasn’t sure it was really Janet. He went ahead of us to Dr. Miller to make sure and was excited that Janet is doing so well. Dr. Miller was his usual upbeat self, although dressed down today. Janet seems to thrive off of his praise and although I was hoping for some detailed strategies to cope with her fear and self doubt, his reassurance to Janet and encouragement to keep doing what she’s been doing resonated with her and may be enough of a boost to push her through these last few weeks at Connect. Janet walked herself freestyle to the Rehab bathroom after the meeting then used her cane and lead me to the outside door where she waited in the sun for me to get the car. While I was gone she had a nice chat with an older lady who was out getting some sun. Awesome to be able to leave Janet do things like that and hope it grows her sense of independence.
Yes, I said weeks for coming home. Hard to believe but there is a very real possibility of Janet being home by the end of November which is only seven weeks away. She is aware of this and is willing to work hard for it. The last doctor of the day was Janet’s GP for a regular check up and to set things up for the lab near our house should Janet need to use it once home. Finally at home, Janet called her own nap time then stood for a long time at the cooktop helping me make dinner. Her stamina for that is growing and she really does appreciate the meals more when she helps out.
Praying for a healing night of sleep and a sunny Friday.
We are now another weekend closer to Janet coming home full time. There were not a lot of direct attempts at reaching the three goals she has left to achieve but Janet participated in many activities that helped her. Each day there was lots of walking, both freestyle and with me pulling her along. The cane was not used once all weekend and the wheelchair was used only for some long outside walks we took. Each day saw Janet do a 200 meter walk with today’s effort clocking her best time by thirty seconds. I’ve been pulling her along on these to try and get as close to the speed she needs to go but we’re still taking just over eight minutes to complete the route. Janet is still too scared to go any faster. Inside, Janet is showing signs of being less scared. She loves to cling onto whatever she can reach but hesitates much less now when approaching an open area and she has to let go of something. The confidence and stamina are building in the kitchen as Janet stood and helped there a lot this weekend. She’s also learning to get herself into better position before attempting a task. Previously she would start doing something the second she could reach it instead of getting herself strong and stable. Janet practiced her reading every day and continues to read faster and with more expression.
Friday night was the re start of our Small Group and we had a really interesting discussion with our three guests and Janet participated well and is looking forward to keeping this going on a regular basis. During our walk on Saturday we ran into a few of our neighbours along the way and had some interesting chats with them. Janet is getting to know more people around here and is liking them too. One of her KGH Rehab Pool partners was at Trinity Saturday night and spent some time reminiscing with Janet but she doesn’t remember much from those days. Tonight we enjoyed a yummy dinner and good conversation with Randy and Claudette, and Henrik and Sandi whom we haven’t connected with for a long time. Janet agreed it was a fun and interesting evening. All in all it was a fairly social weekend.
There were many positives for Janet this weekend, encouragement from others, recognizing improvement in herself and socially functioning at her highest level since this all started. Janet will still have long moments of silence where I wonder if she’s tuned in or not then she’ll contribute in a way that shows very clearly she’s been paying close attention and processing well too. Fun and encouraging to see.
Praying for a good night of sleep and an energetic and confident Monday.
It’s a rare occasion when Janet recounts her morning activities without a complaint so I really enjoyed her phone call early this afternoon where she told me all about the stuff she had done with the only negative being her review of her step exercises as being “terrible”. She seemed pleased with everyone else and sounded quite upbeat. When I got out to Connect a little later Janet was awake in bed after napping briefly, something she hasn’t really been doing much of lately.
Janet’s attitude shift enabled her to take the initiative and walk down to the kitchen to find out what her duties for the evening were. As Chelsea had her help with making stuffed baked potatoes I showed Brian the video from Janet’s attempt at boiling water on the cooktop at home. He approved and when Janet arrived on the scene congratulated her on achieving another goal! Janet seemed genuinely pleased with that news and wasn’t too upset about not passing the laundry test yet. She needs a little more practice in familiarizing herself with the controls on both washer and drier. She’s close.
For her post dinner stroll tonight I pulled Janet around the insides of Connect including up the stairs. Janet handled those well but was feigning exhaustion part way up in such a way that I think she’s mentally giving up at the first sign of exertion. In the end she completed the routine well and maybe realizes a little better just how long of a stride she is able to take.
Praying for a night of restful sleep and a productive meeting with Dr. Miller tomorrow.