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Caresome [Jun. 22nd, 2009|11:00 pm]
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Today, we had Mum’s signing off meeting. She has been at home in her own home for three months. This is so completely marvelous it is like miracles. She is wonderful. We stoutly asserted that she would do it, but can hardly believe her progress. Despite the wheelchair, she looks like herself again and she is very definitely in control.

When you have a stroke on the left side of the brain, you lose all movement on the right side and gain unwieldy swellings for arms, legs and feet. You cannot swallow, so you have drips and protein feed bags, which distend your stomach and lead to alternating constipation and diarrhoea. You are incontinent for months, and have a catheter which will lead to infections.

You are at risk of MRSA, and at some point may contract it, so you will be isolated without all the get-well cards and photos advised by the speech therapist: paper carries infection.  You may see a fellow patient die in the next bed and be carried away one bright afternoon. You may see another patient who is insensible to the helium birthday balloon  – Happy 80th – tied to her bed.  You may endure incredible itching as a consequence of medication.

The stroke is all. You cannot sniff or blow. You cannot tell anyone that you need another pink sponge on a lollipop stick passed over your lips, a clean water jug and your two front teeth, which were dropped and distorted days ago but remain essential. It is so swift a stroke and so damned effective, like the curse of witches. One day you are walking, talking, reading and smiling as the teacher you were; the next day you are on your back like a fish with eye movements restricted to one side. It is so truly terrible that only the cruellest of enemies could wish such decimation on another.

A stroke of this type can silence you in a world where you have become public property and must helplessly listen as your body and mind are discussed, examined, subjected to confidences, turned and cared for by nursing assistants speaking of their lives, and trapped by the visitors who come to confess their woes in the solemn belief that listening helps you more than it helps them. They will also make wild guesses about your needs and fuel old feuds with encounters at the foot of your bed. All this and more, too personally harrowing to share, is what happens after this kind of stroke.

But there has been an excellent consultant unfolding his length and breadth of humanity. There has been a Jamaican nurse full of love, and there has been sustained determination. Mum fought back. Today she is in a meeting with the care co-ordinator who stands astride the NHS and a world of care agencies. Diana is a pleasant young woman with a pony, a blond ponytail and a time share, which is important today because she is both checking on the care package they eventually agreed for Mum and considering how best to visit her pony before the flight.  

I make tea as Mum works hard to explain how and why the care package can be adapted from four visits a day. Speech is still challenging, so I may need to help at some point – but Mum will decide that. I am taking my time and thinking how wonderful it would be to lose the carers altogether, but I know that there are parts of the week when I am not here and my replacements do want carer support.

Sitting in Mother’s sitting room, I watch her communicate. She is involved in the meeting, leaning forward in her small, customised wheelchair Last night she was watching The One Show. It seems to me a kind of miracle that she has resumed an old habit of disagreeing with television reporters. Last night it was some person’s view of Gordon Brown. Speech is still an effort but the exclamation, “Ah, I don’t agree, I don’t agree” was an echo of old times. Now she says, it is not essential. It is not essential to make lunch. Agnes does that.

She has reduced the care package. She is taking control of her own home again. We forget that help comes at a price – and the price is becoming public at home. In this meeting mother has reclaimed her right to some privacy. Excellent.

 

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