This weekend has been all about mental rather than physical recovery.
Wiith the physio team off for a well earned weekend break, patients rely on the nurses to get them up and walking around, so we tend to spend time chatting and I gently coax her to remember past events (often just stuff from yesterday) and the names for things.
Amanda’s ‘brain dictionary’ is intact but completely muddled. But if she says the wrong thing she is usually aware of it and says “that didn’t come out right” or “I’ll try that again.” She is learning to slow her speech to allow the thought to fully form before it comes out. Little tricks like this help in conversations or being able to initiate fully – formed questions.
Just outside the ward there is an emergency kit comprising a large ORANGE cabinet and a YELLOW wheelie bin. So I pointed out the different colours and Amanda confirmed she could tell the difference. I kept repeating YELLOW bin ORANGE cabinet, and then asked her her name and address followed by. “So what colour is the wheelie bin?” “Orange.”
“And what colour is the cabinet?”
That was Friday. Tonight she got it right.
She is also finding ways to replace words. She could not remember the word ‘think’ so instead she said “I had a meeting with myself.” Completely logical but took me a while to work out.
I was there later tonight as the nurses got her ready for bed. I asked if she was able to turn over in bed yet? She said she could sometimes, thanks to the ‘leg muesli’ I finally worked out the word she was looking for was ‘movement’.
Earlier I again showed her the photos I took as she lay in ICU basically connected to life support. I’d shown her before but tonight I got the most emotional reaction so far.
This week Amanda has been perfecting rolling to the side of the bed, swinging her feet over, standing & then turning 90 degrees to sit in a chair. Easy for you and me but technically challenging both physically and mentally.
Her memory is getting better a tiny bit each day, but she still cannot identify a banana and colours are still a mystery. Bananas are still blue. I’ve attempting to reboot the memory, starting with Joel’s baby photo album. All those years of developing photos pre- digital; suddenly they have an unexpected use!
Walking is steadily improving. In the next week we hope to use her standing and turning skills to get her into a car and down to the beach, at least for some sea air with the windows down.
Earlier today, lots of concentration! A 45 minute dressing and grooming session followed by another 45 minutes of speech therapy. By lunch she was exhausted!
I took one of our Burmese cats in to see Amanda on Saturday morning.
Car rides either mean the vet or the cattery, so he wasn’t happy, and the hospital was the largest vet’s clinic he’d ever seen! I was able to close the door to Amanda’s room to keep him safe, but that didn’t stop the nurses peering in for a look. Despite his yowling and asking me where his other human has been for the last 5 weeks he was laid back and, since cats don’t show their emotions like dogs, he took it all in his cool, cat – like stride. Amanda was obviously pleased to see him, whch was the whole point of the visit!
This morning (Monday) she had a shower supervised by her occupational therapist who commented afterwards how well it went. Amanda was able to wash her own hair for the first time in 6 weeks.
But the most remarkable part was the fact she was able to use the mirror to ‘see’ her right side which her brain stubbornly refuses to acknowledge and in doing so was able to problem solve how to put her top on. The occupational therapist had never seen this before so early in rehab.
After lunch and a nap she then walked (assisted by 2 physios), along the 5 metre handrail 6 times. So far she can swing her right thigh but not quite get the full stepping motion with her foot. She should have it by the end of the week. I reminded her that we managed to capture Jess’ first steps on video many years ago and this was the opportunity to now capture her second first steps. I got a look…
Physio has been a full on 45 mins to an hour each morning of standing from a sitting position, and walking along a bar with the main emphasis on locking her right knee to maintain balance.
By today (Friday) Amanda can manage about 20 metres per session with a few sit downs and stand ups in between.
The physio is also trying to get movement in her right hand by getting her to clasp it and hold it in front of her. If she is too tired to do it during the sessions I repeat it when she is more alert after dinner in the evening.
30 minutes after physio is speech therapy. She has absolutely no problem with speaking – apart from the actual words! The stroke has taken her ability to recognise nouns. So a book might be a cloud, or a comb might be an umbrella. But the frustrating thing is she KNOWS what she says out loud is wrong, she just cannot yet connect the brain to the mouth.
Having said that her general conversation is steadily improving. She comprehends perfectly what is said to her and can also iniitiate conversation which apparently is a good sign.
It might sound basic but her brain has already recovered enough to count from 1 to 10, say the days of the week and the months of the year. Basically while her intelligence and intellect is that of an adult, her learning age is around 18 months. For those of you who have had children, do you remember their attention span and ability to take stuff in at that age? That’s what we are dealing with, but with the additional benefit of being able to explain to the ‘adult’ part of the brain why the tests and exercises seem so basic.
So at the moment every day is ‘groundhog day’. After 2 weeks the call button for the nurse is still new to her and has to be re-learned each day.
I went to the hospital this afternoon expecting to see the speech therapist but unfortunately they never arrived. However the assistant to the physio said I should try and catch him as Amanda had a great physio session this morning.
A short while later he walked past and came into Amanda’s room. He said he is very pleased with her progress and she never complains and never gives up. He wanted to show me something so got Amanda to roll onto her right side. he then helped her to sit on the side of the bed, unaided. He said this took significant muscle and limb co-ordination which you and I take for granted.
He then got a low-backed chair and placed it at 90 degrees to Amanda’s left hand and asked her to stand up. She was able to pull herself to her feet while he gently supported her weak right leg behind the knee with his own left leg. She was able to let go of the chair and stand, unaided (although swaying a bit!) for a few minutes.
Later, laying on the bed she was rubbing her left leg against her right and saying she could feel the ‘weight’ of it but no sensation yet. She is, however able to move her right toes, ankle and raise it slightly from the knee.
This is only rehab day 4.
She has aphasia and has difficulty saying meaningful sentences, naming objects or remembering people and events, even from earlier in the day. This was caused by the location of her bleed. This does seem to be improviing very slightly each day but I need to speak to the speech therapist to find out how I should be approaching it. She knows *what* to say and can understand what is being said to her, but either the completely wrong words come out, or none at all. This also affects her ability to read.
Hopefully this can be worked on to improve her long term outlook.
Amanda finally had an assisted shower and hair wash today. So when I arrived at lunchtime she was sitting on the bed and dressed in her own clothes.
Earlier the nurses had sat her in a chair and taken her out into the sunny courtyard area. They asked my permission to put special straps on her next time (careful not to call them ‘restraining straps but that’s what they are), as she tried getting out of the chair which she is actually physically incapable of doing – she just doesn’t know it.
She knew my name today and the kids. I asked her what her dad’s name was and she said… “dad.”
I came back at dinner time and she managed to use a spoon to eat apples and custard. The speech therapist is happy enough with her swallow reflex to allow her to drink normal, rather than thickened liquids, but they haven’t yet tested to see if she can come off pureed food. Also no more insulin now she’s off the nasal-gastric feed.
Once I’ve checked with the dietician I’ve promised to ‘smuggle in’ some treats.
By 6.15pm she was tired out and ready for a sleep, but couldn’t believe it was so early. I might have to get her a cheap digital watch so she can keep track of the time as she keeps looking at her wrist for her watch.
Hopefully some actual speech therapy and physio tomorrow.
I thought I’d get to the hospital early so I could help Amanda eat her lunch. But 12.45 was too late, she’d already eaten. However I saw on the whiteboard she was due to be transferred downstairs to the Rehab Unit at 1pm TODAY! – So I was there in time for that short trip and to be shown around and have the facilities explained to me.
As it’s Sunday there are only a small number of nurses working. The Physios will start on a plan tomorrow once Amanda has been visited by her new doctor..
This afternoon she was so busy moving her (good) left hand she almost missed that her right hand was also wriggling nicely. She is also able to move the toes on her right leg on command.
Now she is off the nasal gastric tube she is able to eat pureed food, which she did heartily at dinner time.
Today’s ‘aah’ moment was when i decided to brush her hair for her after dinner. She was smiling and I said “Why are you smiling? you’d do this for me if I was in your position.” she said “Yes, because that’s love.”
Back to work for the first time in nearly 4 weeks for me tomorrow and a new routine from now on.
Overnight Amanda decided she no longer wanted to eat through her nose so pulled out the nasal gastric tube. As a result she ate a good (but soft) breakfast and lunch and was drinking orange juice, complaining the water I tried to give her this afternoon was ‘too bland’. She is no longer on the ‘watch list’ as there are no more tubes left that she can pull out.
When I phoned this morning, her overnight notes said she’d been restless and hardly slept (planning her escape probably), but she remained alert and awake from 1 until 5 this afternoon, asking what had happened and how long she had been in hospital.
In fact she was so much more ‘with it’ today I decided it was a good day to finally open and read out her birthday cards and the get well cards she has received over the last few weeks.
She is still not good with memory. The best she could come up with for me was our son’s which was close enough. She also struggles with sentences, but is aware what’s going wrong in her head and told me it is ‘frustrating’.
Early next week she is on track to be moved to the rehab unit on the ground floor, as she is no longer a ‘medical’ case. She’ll get physio, speech therapy and occupational therapy where they can re-teach things like dressing, washing etc.
She’s come a long way in just 25 days.
Just been over to Wellington on the ferry to collect our car and after arriving back in Picton I’ve driven for 2 hours into the night.
This thought kept running through my head. I was desperate to get home so I could write it down…
Christmas, 1976 and it’s the Scouts and Guides Christmas party. Amanda and I had already been in the same class at school for several years, but that night I plucked up the courage and asked her for the last slow dance of the evening. I still remember the song (see below)
Fast forward 41 years. January 30th 2017. We were listening to a random 70’s playlist on Spotify. The song came on. I reminded her it was the first song we ever danced to and we had a kiss and a hug.
Two days later she disappeared.
As she dropped to the floor, both me and the paramedics realised what was happening and I’m certain I actually said ‘goodbye’.
But… I’m going to make sure the first song I dance to with the new version of my wife is the same one.
The trachie came out midday Tuesday. At11:15a.m. Wednesday morning as I was walking back to the hospital from Central Wellington I got a call to say Amanda was being flown back to Nelson in 45 minutes, at midday! I was 10 mins from Jess’ flat so rushed back, got my stuff and we both got a taxi to the hospital. Amanda passed final medical clearance to fly and we both took an ambulance to Wellington Airport, then air ambulance for the 40 minute. flight to Nelson. By the end she was ‘knackered’ ( her words) but when I left at 5p.m. she was sleeping soundly in her home town.