Trollheart

Okay then, time to bore you all with my family stories.
Let's start with the good --- my surviving family is split 3 good/3 bad, if you include me.

For the "tl;dr" brigade: My sister has MS but she's great and I love her.

For anyone who wants to spend time reading the full story...

My sister as most or all of you know was struck with MS in 2001. Well, strictly speaking, she had it since the early nineties but the technology didn't exist in Ireland at that time to properly recognise or diagnose it. So in 2001 she was taken into hospital after too many falls and we got the bad news. The terrible news, the sort of news that brings your world crashing down, makes everything else unimportant and changes your life forever.

She continued working until 2002 when she was let go from her job (ostensibly because she was the receptionist and they were getting the switch automated but I think they were just looking for an excuse) and so was at home all the time. This hit her very hard: she loved her job and was a real people person, but although one or two of her former work colleagues came to visit her at home that soon stopped, particularly when she began getting tired so easily, and people rarely fit their busy schedules around one person. And so the visits, which had never been that numerous anyway, trickled away and stopped, and she was left on her own.

She had had, from an early age, a pretty serious drink problem. She would typically drink a bottle of wine a day, every day, seven days a week. Sometimes two. On rare occasions, three. Her balance was already bad and I tried to explain to her that drinking not only didn't help, it actually hindered her and made her more likely to have a fall. But you know how people are when they're borderline alcoholics, and she had after all little else in her life. So I dealt with that as best I could, but hated buying her the wine. I had to though, because she is very pushy and argumentative when she wants to be, and it would only have ended in a row, with a version of "You don't know what it's like!" which really, there's no defence against.

I was working at the time, coming home and looking after her, and our cats. For a year or so it wasn't too bad: she could get out of bed, get herself downstairs. Then after a bit that was hard to do so she would wait till I got home, then I would help her out of bed and down the stairs. As I couldn't very well just leave her on her own I would stay with her, which basically took care of my free time. When she was ready to go to bed I'd help her off the sofa and back up the stairs, and most times she'd have had the bottle of wine so would be very unsteady on her feet. Many's the night she collapsed on the way --- occasionally on the stairs --- and had to be physically dragged like a dead weight back into the living room to wait for her legs to get the strength to bear her weight. Often this could be hours, so I would go to bed and wait to hear her calling me, then go back down (maybe 3/4 AM) and help her up the stairs. I'd then have to be up for work at 7AM.

After several years of this her forays downstairs became more sporadic as her legs got weaker and weaker, and one day she just decided she could no longer face the stairs. It had got to a point where maybe every second or third day she would come down, but then it was maybe twice a week and finally she could no longer manage it at all. I felt a sense of relief --- ashamed of it but nevertheless --- because we had had one or two scares, one of which had involved her leg giving out at the top of the stairs and her pitching down, only saved by my getting behind her and holding her up while trying not to fall myself.

So now she was bedbound, and when I came home I'd see to her meals and change her and whatever, then go to my room and to some extent I had my free time back, but I felt bad leaving her on her own. I would often go in and watch TV with her or just talk. Sometimes she would get very upset and although I would comfort her I would be a little annoyed, as it would be a version of "Why me? I don't want this to be happening!" I know that sounds callous, but after a while you start to realise that you have to show her there's nothing to be gained by feeling sorry for herself, and it's hard.

Anyway, long story short (huh?) she had an attack of the MS --- which she still refers to as her stroke, and it may as well have been --- which essentially robbed her of the power of much movement. She used to be able to sit up on the side of her bed and feed herself. But after the "stroke" she could not sit up unaided and her dexterity deteriorated to the point that she had to be fed by me. We finally got carers in, after my having taken care of her for about four years, doing everything including helping her to the toilet, washing and changing her and washing her hair (that was not fun!) and a great degree of pressure and responsibility was taken off me.

The two best things that happened were that we got a downstairs extension built last year, so that after six years trapped in her bedroom 24/7/365 upstairs, she finally has a window to look out, a bathroom she can use and all the little things we all take for granted, like being able to go to the toilet and maintain a modicum of your dignity. She also sleeps much better. Did I mention she had serious trouble sleeping? She had serious trouble sleeping, and would often lie awake the entire night, making her even more tired in the morning. Now she sleeps great.

The other great thing was that she completely, and totally gave up the drink. It's nothing short of a miracle, and something I had never expected to happen, but it did. So now our lives are a lot better. She still has the MS of course, and it's not getting any better, but we're coping. Luckily we get on really well. I took the opportunity in 2009 to accept voluntary redundancy from my job of almost thirty years, to stay home and be her official carer, and it's worked out quite well really. We have some great laugh, we fight sometimes, we snap at each other, but we love each other and she knows I'll always be here for her.

People marvel at what I do but I truly don't understand it: I mean, what else would I do, or should I do? I'm her brother, after all. How could I just leave her in her time of need? Sure, my life is now totally ruled by hers, but that's not her fault.

Anyway, that's my sister, and obviously that's one of the good sides of my family. But there are some bastards there too. I'll talk about them in my next post, if anyone's interested. Thanks for sticking with it, if you have.

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Trollheart: Signature-free since April 2018