Every second counts!

Well it’s been a while since I have been on here, no time. You see in early August my mum started to feel ill, to become clumsy, dizzy, having falls. Yet the month before her birthday near the beginning and mine near the end, had been fine.

So after 3 weeks in a row of getting GP out to see her, I managed to persuade her to go into hospital as they wanted. So after a day of hanging around for the ambulance to get to the hospital, to wait around to be seen, II eventually left the hospital around 8 and got a taxi home.

That day changed all our lives, mum, me (her only child) and my partner.

Mum was in hospital a total of 9 weeks, and they could find nothing, not one thing wrong with her yet her behaviour became more and more strange and bizarre. Then she would get better, then the next time you arrived, her bags were packed and she would be with us soon as her job had left her tired, or some such. She was drifting away, little by little.

Once they decided there was no physical problem, apart from her painful hips, they sent her home for 3 days with carers , alarms all over the house, people turning up in the middle of the night, kettle and toaster locked up, gas turned off at the hob….. At the end of the 3 days they decided she was well enough to stay at home with support.

It was decided that a carer would call 4 times a day for meals and meds etc. and in the evening to check all was well. This has been the situation to date, ups and downs. She was lucky to get her main carer, a lovely lady who looked after her well, till recently. It took weeks to get a bath chair fitted as she could not get in or out of the bath, the contract to start giving the carer the extra time did not start till after Christmas – yes you heard me correctly, after Christmas, and even then the care company made a pigs ear of it and it did not start till 26 January. The caring crowd were so caring it took them all that time to fit a bath chair which took the man 15 minutes at most to fit.

I am not a person comfortable with confrontation, at least not unless I have facts and figures before me, but I have learned to be determined, and to keep going and going till they listen, to tell an idiot that I was furious at my mums treatment and despite the way she tried to talk over me I held my place as I had all the facts and figures in front of me. Unfortunately she seems to be a worse person than I thought and has now started a campaign against my mum, her carer was treated badly and removed from mum, the person who she had been close to and with whom she had formed a good working relationship – let’s face it when someone bathes you and all sorts of other personal tasks, you must be comfortable.

Another doctor became involved – like a breath of fresh air, went through the meds, to discover she was as good as being kept doped all day and night, which was why she was always tired. I had only recently been sent all the forms re finance – this should have all been done before mum left hospital, and on and on with the sheer incompetence of some of the people along the way. She luckily took on her case as the GP was not involved unless she was “ill”. Gave me guides to help m, wrote to GP, we changed between us the way the medication was collected.

Why should I be excited because a doctor cared about her patient and wanted to do her best for her??????

I have learned I just have to push away, e mal after e mail, letter after letter, no phone calls for me, they leave no proof. I must shout and I must be a nuisance they want rid of, I find it distasteful and has to make me and anyone else reading this what would have happened if mum was on her own, with no one to fight in her corner?????.

The big problem is that I am disabled, I have no great strength, I cant move fast, I cant do what I would like to be able to do for her. One day I took over after a bath and did her hair, fed her, into nightie, ha to help her up and down several times, then trying to get her into bed – she may have lost a lot of weight, but with her sore and stiff hips, my god, I pushed, pulled, rolled her just to get her sitting in bed and not too near the end in case she fell out, got her a nice cuppa, and she needed the loo…………….so it started all over again. By this time I had been out there about 5 hours, and I have a real dislike of my mum’s house, nothing to do with the house, but she feels the cold terribly, much worse than anyone else I know, I am the exact opposite. So for her to be comfortable and me doing all this physical stuff, my clothes are almost dripping, my hair is wet and sticking to my head and dripping off my face.

So eventually all settled, taxi phoned for and I was on my way home. I just knew and got the first pain pills in me asap, but I hadn’t a chance I spent 3 hours howling with pain, everywhere, and on the point of trying to knock myself out by banging my head off the wall or phoning for stronger pain meds, when I thought to take some diazepam……just enough that it was bearable.

What that did was remind me why I cant do what I was trying to do, and combined with the exhaustion of very little sleep ( mum wakes so calls me to confirm the time on the clock 2 am 3 am whatever) plus extreme fatigue is part and parcel of my AS.

So what I have learned, at this late stage, is few folk help you unless you ask and ask and demand if you need to, that while everyone cares, they don’t really want to be involved – no a single neighbour even asked if they could take her big trolly bin out on bin day and bring it in for her, and one night when I had an emergency I called a neighbour, but his wife had just put his dinner on the table, so apart from the few, you become pariahs.

Despite all that I know that your life can be completely and utterly changed in a second and with no warning, so I shall enjoy every good thing that happens , however small and meaningless to anyone else, I will try to smile and maybe bring a little joy to someone else’s day. To remember that I love my mum, but even in my 60’s I have a life too, a very restricted life it’s true with my health issues, but I have bought 3 things – each has multiple parts – but things I have always wanted to do. I have reflexology each month, I have a quite ugly to be honest, but a trolley I can handle much easier bringing laundry back and forth, or shopping.

I never go to anything vaguely social, so I must make an effort for me. I frequently feel invisible as there is by some,the idea I’m lucky I  only need to visit a few days a week, but in those three days I do far more than I should, I can’t just sit and chat and not do jobs obviously needing doing. Then the endless paperwork when I get home. I am restricted as I have no transport and cannot walk far enough to do all that is involved in getting to mums, maybe in the summer with my stronger trolley, you never know. They have no clue about the sleepless nights, the added pain, the depression.

So I got a deep plum slash down the side of my bright red hair, I wear what I like these days, I don’t give a toss. I had one of my E Bay buys, a Purple and purple patterned sleeveless tunic with a ruffle round the bottom, I put a black long sleeved T under it and block baggy trousers under my furry pink crocks, and my mum never stopped saying how great it was, probably should have been half my age to wear, but who cares?

This has been more of a ramble than a blog, but I hope if anyone reads it makes them think that all is not what we think, you never know just what is going on in other people’s lives, and that people who have relatives in this situation, there is so much more going on than you might imagine. That you, like me, should have the deepest respect for those who have loved ones with them full time. But mainly try to realise what is important and what is not, try to enjoy your life to the full because it really can change forever, and you can be lost in a second.

I  need a scotch now!!! I havent proof read this as my eyes have decided enough is enough and my hands are clawing, so some of the ramble might be a mess, but the gist I hope will be there to understand.