A whole lot of stress and not a lot of sleep.

I’ve found some time to blog and it feels like there’s been a whole lot going on.

My mum was discharged two weeks ago rather abruptly basically because the physiotherapy team or whoever it was didn’t want to lose the care package that they had “worked so hard on” and rushed her discharge through even though she had health issues that ought to have been resolved prior to discharge. So it’s been really tough. Mum can’t utilise the care package. I cracked after day 4; I broke down and told the district nurses that I could not cope. This is all on the background of feeling physically bad (combination of chest infection and asthma plus some weird viral sore throat thing) which just amplified how tired I was from feeling from caring for mum. I’ve been left somewhat housebound which just makes it all feel worse as I feel quite isolated. Mum has little understanding of how exhausted I am. It doesn’t matter to her that at 4am, when she wants me to lift her up and take her to the bathroom and then wants a cup of tea afterwards, that I was asleep.

The district nurses have been great and tried to get something sorted, the hospital didn’t want to know as she was no longer their problem and the intermediate care team (the people overseeing this care package) refused to send her to rehab as she is not “motivated enough”. Mum cannot utilise the help the carers are meant to provide because both a) she can’t stand up and answer the door therefore that’s a physical barrier and b) her mental health issues impinge on her ability to trust and allow carers to do whatever task there is besides personal care.

I’m exhausted from having carers coming in all day who do basically nothing, or come in here and moan about their job for the allotted time. It is all a farce. My mum has spent 4+ months in hospital, she has gone in with one thing and come out worse with multiple health issues. For goodness sake, she went in being able to walk and is now bed-bound! I can’t convey how frustrating this is. The nurse from intermediate care, let’s call her C, came last week and was just telling me to persevere with it and that they can add more carers which to be honest does NOT address the problem whatsoever. It was like banging my head against the wall, I tried to explain to her that mum needs physiotherapy ASAP or she will lose focus fast and end up like this more permanently but it fell on deaf ears. Mum will have to wait up to 6 weeks apparently, that might be too late – I know what my mum is like.

I spoke to mum’s CPN about this several times and she spoke to a nurse who has experience of people with physical and mental health problems (we shall call her J) who said it sounded like mum needed specialist rehab. They had found a place in Daventry but was very expensive and thus didn’t get funding. J came to see mum yesterday with the CPN and she was really helpful. She did an assessment and said that she definitely felt this situation was unsustainable for both mum and myself, and that mum does indeed need specialist rehabilitation. She understood the situation, it was starting to feel that I was wanting something that isn’t possible, maybe it still isn’t but least there is someone who might be able to help. J is coming back next week with someone from another specialist rehab centre to see if mum could go there. Sadly, as the intermediate care team won’t send her to a local rehab facility, this means my mum could end up quite far from home.

I’m feeling quite isolated as there is very little help and I’m not getting out much. My mum’s sister came and she just made a series of spiteful comments and refuses to help. So much for her act in hospital of caring “so much” for her sister. She is doing this to a) punish me for daring to stand up to her and b) to punish my mum because my mum has a certain friend and she basically doesn’t want mum to have friends. It suits my aunt if my mum is isolated and housebound, she actively discouraged mum from going out before mum went into hospital. Probably embarrassed I think.

I do realise that this blog post (as with my others) is a long self indulgent rant but I need to get it out somewhere. I’m starting to go crazy with all of this, things are not good in simi-land.

Posted with WordPress for BlackBerry.

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One thought on “A whole lot of stress and not a lot of sleep.

  1. kerri says:

    Hi Simi,
    There is not really much more to say, but I am sorry you are going through all of this. Continue to advocate for both your mum and yourself, but please if at all possible find a way to take a break–do you have daytime or overnight respite care services available there?
    Please take care of yourself, friend.

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