I left hospital with all sorts of equipment and gadgets to help with some of the tasks that, previously, were accomplished naturally and unaided. I also had my end of term report. (Discharge Statement.) This listed things the things I could, and mostly couldn’t, do. It also graded me on arriving at and leaving hospital on a scale, The Barthel Index, which measures performance in 10 Activities of Daily Living (ADL). The Scale range is 0 – 100. Score of 91 – 99 = slight dependency, 61 – 90 = moderate dependency, 21 – 60 = severe dependency and 0 – 20 = total dependency.
My admission score had been 23/100. On discharge I had reached 26/100 = severe dependency, leaving lots of room for improvement! (Spoiler Alert: it improved to over 90 within a year, proof all the exercising and physiotherapy really pays off.)
Sleeping had been a major problem for me in hospital. Apart from the first 2-3 days when I did little else, I rarely slept daytime and only a few hours at night. I felt cheated. I had been told it was normal after a stroke to sleep frequently. Another abnormality?
The first evening home I found it very difficult to stay awake so we started the long process of preparing me for bed. I was longing to have Gill by my side. She had placed a linen basked on legs at my side of the bed containing a bell, a drink, tissues and the inevitable urine bottle. I had spent weeks in a very firm hospital bed. We tried to get me into our spare bed, which Gill and a friend had carried downstairs, now complete with new four-inch mattress topper, as recommended by the OT to make it higher for me. The softness and springiness made me freak and panic, almost a feeling of dry seasickness. After trying again, we gave up and Gill struggled to remove the new mattress. I felt very guilty, but very grateful.
It was a disaster! The feeling of total numbness I had right after the stroke had been replaced by severe backache, a sprained ankle, sciatica and a torn shoulder because I kept waking up with my right arm trapped under me. I kept shifting position but, as only my left arm and leg were driving me, I was a very untidy mover. Eventually, Gill had to give up and, once again, take the lonely trek upstairs to our bed. I was devastated.
I had been discharged on a Friday. This meant the Care Package which had been arranged did not commence until Monday, so Gill had a whole weekend to acquire some practical skills and qualify as Personal Carer.
These memories are incredibly vivid and I’m hoping it’s serving some cathartic purpose for Terry to share them. It’s fair to say I was pretty clumsy that first weekend. Things have moved on – for both of us!
He left hospital in May 2013. By early autumn, Terry was far more mobile and could climb the stairs, and we were able to send the spare bed back where it belonged. Getting comfortable in bed, and staying comfortable, was a real challenge for a very long time. Just over a year ago – stroke +6 years — I realised he was no longer waking up in the same position as he’d started. Further, I noticed he was turning, naturally and spontaneously, in his sleep. Wow!
Today, he is able to do most things, and he’s rather neater at making a bed than I am. He certainly doesn’t need help with dressing, eating and so on – witness this boiled egg, shell intact, a recent achievement, and the final frontier in terms of dexterity in dining. Nice work. Carrying a tray upstairs is still in the ‘working towards’ category; but Terry can now carry two glasses of water from the kitchen to the sitting room. He’s busy in the kitchen as I write, and he’ll leave it in a better state than I might.
Outdoors, he walks with a stick. Uneven pavements or paths which have a camber are still a problem; but I have to remind myself that at one time, I really didn’t think we’d ever walk on rough grassland or on a beach together again. These were huge milestones, now passed!
He began driving again only ten months after the stroke. His stamina behind the wheel has built up tremendously in recent years. At first, he had to change the car for one he could easily get in and out of – most models were too low. A year ago, we changed back to one where the driving position allows him to stretch those legs again, essential for longer journeys. Our first holiday in it took us from Somerset to Shipley to see the World Heritage Site, and the Hockneys at Salts Mill. (5 stars!)
Simply by taking one day at a time, and not giving up, many gains have been made; and a lot of them weren’t ever explicit goals at all.
More about the current goals later.