I got a much nicer greeting from a very chatty Janet this afternoon. She told me the ABC’s and the seasons of the year without being asked and in her loud voice. In fact she was using her loud voice so much I recorded her wishing you all a Happy Halloween. Janet. Happy Halloween
Janet chose to go for an inside walk as our first activity and after making her best attempt at getting up from her bed we set off with her driving Bam Bam style. I was amazed at how well she did going from her room, turning left, past the nurses station and almost to the next hallway without any assistance from me, not even steering. All I did was remind her when she had to turn or straighten out. Huge high five! Once clear of the elevator she drove with her left arm down to the cafeteria then I took over as we headed for the Centennial Building lobby. No room to sit so we headed back with Janet driving the long hallway. We still haven’t conquered The Bump and I invited her to try it Bam Bam style but no go. Some other time I hope.
Back in rehab we had time to visit Jessica so I could talk to her about Janet’s legs. She will talk to the other OT’s about any apparatus or ideas for helping diminish the tone. We saw Chantelle while we were there and Janet said a nice Happy Halloween to her. We cruised over to the gym to see Moira who said Janet did well in their session this morning. She and Jessica will talk about Janet’s legs tomorrow. It was then time for Janet’s first attempt at toileting in five and a half months. She did not like it one little bit. I didn’t think she would but she was a little better once we removed the sling and got the lift out of the way. I think it’s important to keep trying for a while as she did tell me she doesn’t like wearing the undergarments that she has to wear now.
I put her back to bed after the commode experience and she cheered up right away and chose to practice talking. She did her best yet with me and I stopped when I noticed her slowing down and thinking each phrase out a little more. I want to make sure this stays fun and not work. Today was the most I’ve heard her loud voice by far. There was one last phrase I wanted to hear out loud and that was trick or treat. She said it with great enthusiasm as she knew I had brought her some Tootsie Rolls. Her favorite Halloween treat. I checked with Nicole from Speech earlier to make sure I could give Janet some (in a chew bag) and she thought that was a great idea. Janet made quick work of her Tootsie Roll and had a real smile on her face throughout. I didn’t time her swallows but they seemed much faster than previous and there was no funny face in reaction to the flavor at all. She enjoyed that treat so much I actually got a little choked up watching her.
It was getting near time for me to leave so I could hand out Halloween candy at home so I gave Janet a decent stretch, and then we read The Hallo Wiener. Love that book. She seemed to understand I had to go and was getting a little tired anyways as she did not nap all day.
Praying for a restful night that brings healing to her legs and right shoulder and for a successful swallowing X-ray tomorrow.
Janet gave me a smile then a “what are you doing here?” look which I didn’t think was very nice. She tried telling me something very important and she was using her loud voice but it was a mix of Klingon and word salad. Nicole came in with Janet’s meds and said that Carol charted something that Janet said to her at 5am when Janet woke up. She couldn’t remember what it was but that’s cool it got charted.
The morning stretch began after Janet brushed her teeth. Her right arm continues to loosen slowly and we got a good stretch from it. Her legs were super tight again at the start and I was worried they would be worse than yesterday but by the end of the routine the result was about the same. At one point I was massaging under Janet’s upper left leg and she told me it hurts. Not crying hurts but a little frown and a loud whisper. I didn’t feel anything unusual but things are pretty tight there.
I invited Janet to get up from bed herself and she seemed to want to but just couldn’t put all the moves together this morning so I coached her through it and sat her up. I still love how she seems instantly happy when she sits up. Time was ticking so into the wheelchair she went and I got her ready for Halloween. In Janet’s preschool teaching days she used to play a character she called The Color Wizard and she would sing and act out lessons on color for the kids. She was really good at it and the kids loved it and I tried to convince her to market herself as a TV show but no go. I found some of the costume she used and dressed her in it this morning. She seemed to really enjoy it especially when she got to the gym and all the staff were dressed as inmates and they all thought Janet looked really cute.
This is Moira the inmate and Janet The Color Wizard.
I hope everyone has a safe Halloween.
I walked in on a sleepy Janet this afternoon, I guess Heidi had her busy during her visit, but despite the heavy eyes Janet said she did not want to sleep. She needed to be changed before we could do anything though and I talked to Nicole about finding a more effective way of capturing the liquid Janet produces. I suggested the pediatric ward as Janet is pretty small. Nicole said she’d ask around and agreed it would be nice to find something that fits better. I mentioned Dr. McCann’s toilet training program idea and Nicole said they will start it with Janet tomorrow. Yea.
Janet was quite chatty before and after getting changed and couldn’t wait to get up and really wanted to stand once she did. I’m reluctant to try much standing with her legs not straightening as much as I’d like and it was time for the Skype debut of Mary/Gaga anyways, so into the wheelchair she went. Once Keith adjusted the webcam for Mary/Gaga we had a very nice image of her coming through and Janet was excited to talk to her mom. She couldn’t get the loud voice going too well but managed a couple loud whispers and some big smiles. I must say the picture quality from Mary and Keith’s is the best I’ve seen. Don’t know what’s wrong with the rest of y’all but you better step it up.
We went on a hunt for Janet’s left foot rest after the call with Mary/Gaga and Jessica found it in one of their storage areas. She had taken it off in the hallway as Janet was doing some Bam Bam driving during OT. We then went outside for a nice walk. I should not have let Janet out in the pants she had on though as she got cold enough to complain to me at the end of our walk and said she was too cold to drive down the long hallway. It was nothing a nice warm blanket couldn’t solve though. Wish you could’ve seen the smile when I wrapped her in it.
The rest of the afternoon was spent reading, watching a video and chatting and trying to get the loud voice going. Just as dinner was about to end we heard a bunch of people walk into the unit and start some Halloween celebrations in the dining area. Janet had like five minutes of dinner left but by the time that was done and I got her out there, the costumed singers were walking away down the hall. Janet wasn’t disappointed though as she got a sudden burst of energy so I had her drive around the unit for fifteen minutes. She was super chatty and using her loud voice a lot. Most of it was Klingon but it was by far the longest spontaneous use of her loud voice that I’ve heard. Very exciting. Nicole mentioned she had asked around for smaller undergarments and apparently some do exist but none of the other wards have any right now. She`ll keep an eye out. Finally Janet was ready for bed but stretching had to be done first. I had to tell her I’m still not happy with the legs as I spent a good fifteen minutes on them and did not get the result I’m used to getting. She seems to understand but without even thinking brings the left one up to a point within minutes of me letting go. Not happy.
Praying for a night of keeping the legs straight and for some good stretching tomorrow.
A great start to the day! Janet greeted me with a smile and a hug. She noticed I had shaved that’s why the hug. She was a little groggy still as I had come in earlier than usual wanting to spend more time stretching. We had a nice little chat before I got her up to brush her teeth. She didn’t like doing that this morning for some reason but struggled through it. Connie came in and did some vocal exercises with her. Janet talked nice a loud a few times and seemed pleased with herself. I asked Connie about Janet repeating things even when not asked to. She said she has noticed that over the last week or so as well and suggests giving Janet “choice questions” instead of open ended ones. An example would be, “What color is my shirt, red or blue?”. We tried that a couple times and it worked. Connie says to only offer open ended questions when Janet is at her brightest.
The stretching of her right arm went well. I get a sense that the Botox is starting to kick in. Janet’s legs meanwhile are starting to be of concern to me. Both were quite tight this morning. I made good progress with them but it took all of the extra time I had allotted plus a little bit of Moira being late coming out of Rounds as well. I asked her how concerned I should be and did not get a direct answer but Moira is aware and will plan her sessions with Janet with that in mind. She said it would be nice to get her on her tummy again but we are both concerned about her right shoulder so will wait for the Botox to have more of an effect. Janet had quite a case of bed head this morning so while Moira was visiting she wet Janet’s hair and styled it up a bit. Nice that she cares that much.
Janet wheeled her way down to the gym then did ten reps each of five through ten pound weights. She thought the five, six and seven pounders were silly so we will avoid those next time. She actually had to work a bit to get the ten pounds done so that was good. Moira came over as we were playing catch with an eight inch ball. Janet was catching and throwing it amazingly well. Connie must have talked about the “choice questions” in Rounds as Moira offered Janet a written choice of Tilt Table, Step Machine or Mat. Janet chose Step Machine with a loud voice and off they went.
Praying for a progressive day full of learning.
When I got back to Janet’s room this afternoon I tried my best to rush her out the door to take advantage of the sunny break that was happening. She doesn’t move that fast though and I wanted to let her do as much of the getting ready as possible. I did a quick limbering up of her legs then invited her to get up from bed. Her first attempt failed then I coached her through another that had much better success with me helping the right leg the last little bit. A high five was in order as she sat up then into the wheelchair, shoes on, jacket on and out we went. Of course by this time it had mostly clouded over again but it was still nice to be out and Janet assured me she was warm enough. To stay that way we avoided the beach and headed south, away from the darkness to the north but it caught up to us twenty minutes later and we had to head for cover. We sat in the Centennial Building lobby for a lot longer than I thought we would as Janet was really enjoying watching all the people go by. It was quite busy and there was every size and shape and color of person walking and wheeling and hobbling by. It was quite interesting. I asked her a couple of times if she was ready to move on and she shook her head no and then would track someone else’s movement. Fun to watch them and her.
On the way back to rehab I asked her to try her Bam Bam driving, but the hallway was too busy and I think she was nervous about that so we went to a quieter one and she did well. She wasn’t totally into it as I guess it was a little late for that much work. Back in her room we Skyped Andrew and I couldn’t get her to do more than a whisper for him despite having done some vocal exercises in preparation. She seemed to enjoy looking at herself on the screen more than anything else, which is rather unlike Janet. Anyways it was good to chat with Andrew.
I tried to get some more loud voice going with Janet after that and didn’t have much success. I have noticed something over the last couple of days though. Now that she uses her loud voice more and her whispers are louder I can hear that a lot of what she says is a repeat of something I’ve just said even though I didn’t ask her to say it. A few times I’ve leaned in to try and decipher what she is trying so hard to say and I pick out what I said a few minutes ago when I thought she was coming up with something original. I’m going to ask Connie about that tomorrow.
During the last half of dinner I read some of Anne 2 to her. First time in a while and it was nice to get back into it. She was luke warm to the idea at first but once I started reading she was dialed right in. Janet only had a few very short crying episodes this afternoon and two were pain related. One for her right shoulder and one for her left knee. The frustration one was really minimal and stopped when I completely changed the subject of our conversation and had her getting ready to brush her teeth. She was a little restless in getting ready for bed but once tucked in and we said our prayer she rolled onto her side with her legs bent up and all I could do was shake my head and smile as she closed her eyes. I’ll talk to Moira about the legs tomorrow.
Praying Janet moves her legs around lots tonight and is ready for a great day tomorrow.
For a rainy Monday morning I got a pretty nice greeting from Janet. A smile and a hug. We had a little chat then I told her what she had scheduled for the day and that’s when the tears started. Not as intense as yesterday and she did manage to whisper through it a number of times, “what’s happening about getting up?” Not sure what she was concerned about but she stopped crying after a couple of minutes and we started stretching. Her right arm seemed pretty good today and just as I was starting her legs her nurse came in with her meds and I asked that Janet be freshened up before we headed off to Physio. While laying there getting cleaned up she started crying again, this time showing me that her right shoulder hurt. I told her that should start to go away in the next couple of days and she calmed down with that. Her legs were super tight this morning so I am thankful I had time to spend stretching them before we had to leave. I got a decent result but I warned her again about keeping them curled up so much. Connie stopped by again to kick start Janet’s voice. So fun to be able to hear Janet from ten feet away instead of needing to be ten millimeters.
Janet was all gung ho to get up but we were running out of time so I helped her and once up you could see the increased brightness. I had Janet drive to Physio and we met Moira right by the nurses station. She was impressed with Janet’s determined driving and asked if she had propelled with her left leg at all. Of course she has so it was time to show off a little. Janet used her leg and arm to gain record speed and control of her wheelchair all the way to the gym. I had to help her when she drifted too far to the left but she corrected from the right by using her left foot. I also helped with the sharp right turns along the way but I think she did well enough to be elevated from Pebbles to Bam Bam status on the Flintstones driving scale. High five! I left Janet with Moira and she was her usual happy self in the gym.
This morning I met with Gordon and Gord at CedarCreek and submitted my resignation. This was by far one of the most difficult decisions I have had to make mostly because I could not discuss it with Janet. It is because of my love and commitment to her that I chose to resign. I truly feel that as long as she is in recovery mode I need and want to be there for her doing whatever I can to give her the best chance at recovery. CedarCreek has been supportive of any family event I’ve needed or wanted to attend to since I started working for them. They have been very patient and supportive since Janet’s hospitalization I thank them sincerely for that and encourage you all to buy their wine. Seriously. It’s good. Thank you also to those of you who took time to help me with this decision. Being able to bounce different scenarios off of “neutral parties” helped for sure.
Thanking Jesus for His guidance and looking forward to a bright afternoon.
The afternoon started with the longest and most intense crying session from Janet that I have experienced. I looked in her window before I went in and she was eyes closed looking rather peaceful. I got into the room and she gave me a little smile, we had a brief chat, I asked her what she wanted to do for the afternoon, then she turned away and let the floodgates open. She wouldn’t/couldn’t tell me why she was crying nor did she seem to want me there at all as she kept turning away from me. After ten minutes with no sign of letting up or telling me what the issue was I got a little mad at her (tough love style) and told her she was being rude in turning away all the time. No reaction except for her starting to try to get out of bed. I encouraged and coached her for the first couple of attempts but each one resulted in more tears even as she was progressing towards the edge of the bed. In another tough love move I sat in the comfy chair away from her and just watched her try and get out of bed while crying for about fifteen more minutes. It hurt a lot to watch her as she was very upset but I felt like there was nothing I could do. She wasn’t in pain, this was all about frustration and awareness of her situation. I’m not even sure she knew I was there most of the time. I experienced a lot of different emotions and thoughts during this time and it really helped to solidify my devotion to her. I think I needed this pain to erase any doubt about my role in Janet’s life and as soon as I realized that she had calmed down and was about half way towards sitting up on the edge of the bed. I approached her with a new attitude and assisted her the rest of the way. I smiled at her and told her we are going outside for a walk whether you want to or not, it’s sunny and the fresh air will be good for you. She looked at me like I just walked in the room. I apologized for getting mad at her and off we went.
It was a beautiful warm Fall afternoon and we sat at the beach for about fifteen minutes. Janet had a smile on and I asked her if she wanted to get on with our walk, she said “just sit in the sun”. We did. She was very content and it was really nice to be there in the peace and quiet. We did go for a long walk enjoying the Fall colors. I even got to throw huge piles of leaves at Janet and make her laugh. I kept her out about fifteen minutes too long though as she got a little cold near the end so once we were back inside she went straight to bed to warm up a little.
We had a Skype session with Heather and Allan. Janet refused to use her loud voice but managed a few audible whispers. Cam managed to overcome yesterday’s technical difficulties and had a little chat with his mom. Janet may not have said much during these conversations but she was smiling and enjoying listening. I think it is very beneficial to stay connected this way. I noticed Mary/Gaga now has a Skype name so maybe we can connect with her on Tuesday. Andrew is up tomorrow as long as Rachel permits. 😉
Janet was pretty worn out by this time so I got her dressed for bed, had her brush her teeth, then I stretched her legs and said goodnight by 6:15 as she was pretty much asleep. A tough start to the afternoon but a loving and enjoyable finish.
Praying for a restful and healing night and a bright and progressive day tomorrow.