Well, today is my 27th birthday. We were told that I would be lucky if I got to 25, so being still here today is either a testament to my stubborn nature, my refusal to quit (although there have been times when I got close, and I mean REALLY close, measuring up an overdose of my meds and seeing what would be quickest, but I'm putting that behind me now) and my spirited nature. I think I have dealt with things that most people would look at and think "Screw this, it's not worth it anymore" and I am still here. I think that is something to be proud of.
I'm a survivor. Not a victim. I have no reason to be ashamed of myself or the life I lead, actually, I think that I am holding up well considering the circumstances and the things I have to deal with. Luckily I have been given a package of care from the social services because on my own, I know I would never be able to manage to take care of myself. This was something I worked out some time ago. It isn't a nice thing to be dependent on others to help and I do try and do as much as my conditions allow. I don't ever want to be a burden on my friends and family, I know they wouldn't refuse to help but that's not really the point, so getting help from a care agency has been a wise choice.
The carers come in 4 times a day to make sure I am alright, get me a meal when I'm hungry as well as helping me with personal care. Because of my arthritis I struggle to get in and out of the bath (well going in is easier than getting out) as well as getting breathless when I do things. The social worker was looking to reassess my case and see whether the care was appropriate and whether or not I would benefit from a "Promoting Independence" worker instead. Unfortunately, it was very clear to even the most scrimping social worker, that removing my care would be completely detrimental to me.
The problem is, my illnesses aren't a temporary state. The damage done to my body is permanent and it means that only less then 1/2 of my lungs work anymore. This means that my tolerance to certain things is dramatically lowered and I am becoming more and more reliant upon the equipment around the house to keep me going. Its not an ideal way of life but I am at least making the best of it. I don't see it as a reason to feel imprisoned in my home or in the hospital. There was a time when I never went out unless it was to a waiting ambulance and a "night out" involved being used as a test subject and this was at it's worst (before I had a home nebuliser, which would have made taking it away again even more insane) about 2-3 times a week. Hardly what one would expect for someone my age really.
Today has been one of the best birthdays I have ever had. I breezed through the social worker appointment and the council guy coming to check the mould (weird, it's not actually a damp problem or a condensation thing, they said it was probably just the lack of air flow because under my bed was full of boxes which are now in the cupboard) and he checked the walls (turns out my love of open windows and not sealing my home is actually a good, healthy habit) and everything is fine, I can continue to enjoy the home I have here and the level of care I have been getting.
Last week, the social worker did kind of light a fire under our backsides and said that she felt I was "too young to receive care" so when she came in today, she saw what my life is like first-hand. Illness doesn't just choose older people. The problem is that as we have an ageing population who need more and more support, the majority of clients on care agencies books are elderly people and the ones who can't get help or the families are sick of (which I really find deplorable) are stuck in hospital where they are prone to getting super-bugs and other hospital acquired infections (all because the families are too selfish to care for them) and this puts extra strain on the already stretched medical services. I have heard stories of people dumping their elderly relatives at A+E with their suitcase and refusing to take them home again, meaning medically fit, elderly patients are left in an environment which is totally inappropriate. Yes, there are genuinely very poorly older people and they deserve the same care that any other patient gets. But the people who deliberately injure or make themselves sick to either be admitted (or, as I have witness, made themselves worse to stay in) to hospital is shocking.
Usually, as I have been told, it is an attention thing. When someone is in hospital, they are being taken care of around the clock, they have food and drink brought to them. They're washed, dressed and generally waited on hand and foot which puts so much pressure on the nursing staff. These nurses are already pushed to the edge by the amount of people they get, not to mention more demanding patients who want constant attention and care. Whenever I think about this, I think about a patient who I am just going to refer to as "J".
I was on a ward with this woman for nearly a week and the way she behaved was utterly foul. You see, she wanted to be hooked up to drips, oxygen and machines. The nurses would be in constantly to her because she was so demanding. Drugs rounds took over 2 hours sometimes because of her, either her "crying" for attention, holding her breath to make herself look more sick and pretending that she was dying (despite the fact that the doctors couldn't find ANYTHING wrong with her) so that her family would refuse to take her home. When nurses went to her, she would scream at them, hit them, spit her tablets out at them and would decide at 2AM after not eating all day that she wanted her insulin and she wanted it NOW. If someone else was being cared for, she would scream and make a fuss, the bedtime drugs would finally get finished at around half 11 at night when she had finished, the nurses would try and reason with her that they had other patients to care for but she would go even louder. She had been banned from all the other local hospitals for her behaviour. Her husband was more worried about losing the DLA and Motability car if she died (which honestly she was in NO danger of, even in breath holding, her sats stayed normal which pissed her off even more, when they took the oxygen off (she was only on 0.5l) she had a right hissy-fit) and the family wouldn't take her home because when they visited she would pretend to be unconscious (the doctor explained over and over that she was just attention seeking and I felt for him because he bore the brunt of the relatives, eventually the guy snapped and dragged them all in to the office to tell them that she was faking it!), peeking out from under her eyelids every so often to see if they were still there...
Unfortunately, as the nurses said, the respiratory ward gets a lot of these patients because there isn't any care in the community for them. The families refuse to look after them and toss them away because they're too much hassle so they get dumped there. People should realise that a hospital isn't a "free care home" and as we have an acute hospital, I do think that people who don't need to be there should be in more appropriate places. They should increase the social care budget, because they don't get enough to deal with the workloads they have and unfortunately some people do slip through because they don't fit the criteria in some way. I suppose I was lucky to be found to meet the criteria to be awarded funding for care but I do feel so sorry for the poor old dears who are just left in a situation that isn't right for them, including people who refuse to let their elderly relatives go in to residential care because it effects their inheritance (seriously, how disgusting is that?!) or refuse to take care of those vulnerable people because they're too much hassle. These people are still people and they shouldn't feel like being stuck in hospital is the only way of maintaining a decent quality of life. That's just my thoughts though.
4 years ago