Monday, 25 March 2013

Monday 25th March - Life in Flatland

A brief long update on how my mother is getting on, for friends and family.

Maybe it should be on "how we are all getting on" - it affects all of us in one way or another.

She came back to the flat in the beginning of February, with carers coming in four times a day, some one living in for the first ten days to provide cover at night and for some of the day time (a private arrangement), and visits by all kinds of people; social workers, district nurses, the doctor, audiologists, physiotherapists, speech therapists, occupational therapists and others too numerous to keep track of. My father's calendar became covered in post it notes as the appointments for one day over flowed into the next. Each day seemed to be a ceaseless round of telephone calls, and making arrangements for this that and the other, including getting out to do the shopping.
"The sight of your father with a garlic press - well, that is something to behold" commented my mother as he wrestled with producing delicious meals...

I went in whenever I could - before starting work, or in a lunchtime gap between schools, and at weekends. My brother drove down for a couple of days, or even just a day, most weeks. Our cousin came over from France for a long weekend.   

Night-times, to begin with, were very difficult. The various medications made my mother confused and also seemed to cause vivid and disturbing dreams; one night she managed to completely turn herself round in bed so that her head end was at the foot and and vice versa - how did she manage that, when she is unable to use her left arm and leg? And however did they manage to turn her round again? Every couple of days would bring a new problem which needed sorting.

Steadily, over the weeks, an enormous improvement has taken place. The physiotherapists have been brilliant, and arranged for the "string-em-up-in-a-hammock" style hoist to be replaced by one that eases the patient into a supported standing position. We have now been trained to use this hoist ourselves, or order to give my mother extra "standing up" practise between physiotherapy sessions. There is definite progress; last week in one session she was able to get from sitting in the wheelchair to standing, using the foot of the bed as a support. It took a fair bit of skill and effort from the physiotherapist - but whoopee - that's progress!

The first 6 weeks of "home" are over, and all the initial arrangements for care by the hospital have been replaced by the new "here's your budget, how will you spend it?" system. The new care team have been coming for five days now, and so far, so good. The physiotherapy exercises assigned for between visits are well underway too. It's a painful process; as well as the cramps that have plagued her since the very beginning, she is now gtting pins and needles, and burning sensations, and itching in the affected side of the body. This is good news in one way, as it means that the brain is trying to connect with the limbs. But it hurts!

The medications have been adjusted and the night times are less confused, and the overnight carer comes just once night a week to give my father a "night off". As my mother improves, he is able to become more relaxed - hopefully, he will be taking the opportunity to go out for a while when the carers are there in the morning - maybe shopping, maybe for a walk, maybe to just have a coffee and some time to "go offline". Meanwhile he is getting plenty of training in becoming a cook, under instruction from my mother. Roast lamb, roast chicken, home-made cottage pie  - and very occasionally the odd ready-meal!

I'm looking forward to warmer weather, when we can think about going out - squeezing the wheelchair into the lift the first few times will be a learning curve, because it is such an exact fit. Meanwhile my mother can watch the children running to and from school, keep an eye on the pigeons, birds and squirrels, and check out what the people in the flats opposite are doing (mostly ironing, or watching what their  neighbours are doing!)

Slowly, things are becoming more known, more understood, and, I can definitely say, better.

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