six months

It has now around six months since this whole thing with mum started. It has gone so quickly and up until the past couple of weeks I viewed this situation as a temporary blip. It isn’t temporary and it’s going to take a while before progress is hopefully made, this could mean it could be up to another six months before there is any resemblance to how things were before.

Except they won’t be the same because even if the physical side of things improves for mum, there is this thing with having had this experience quite separately. For example, there were weeks and weeks where mum and I couldn’t engage in any normal discussion because she was so poorly, out of it. While she was actually going through it physically, it is hard for her to relate to the amount of anguish and anxiety I went through watching it happen. She doesn’t know what it felt like watching her so agitated writhing around on her bed on the ward or during dialysis sessions, ‘awake’ yet unable to talk and no one understanding why. We talk about things now and she barely remembers anything except mainly post operation and a few weeks before it.

I’d quite like to forget or rather move on from it because I’ve thought about it a lot while going through it and since. Its hard to move on while the situation persists in that she needs physical rehabilitation. It is a cruel thing really, everything in hospital 2 months or so ago was just about her surviving the whole thing and now its another thing to contend as I pretty much thought once she was well she’d be more or less back to what she was.

I’m worrying about rehab because everything depends on funding. Mum was assessed for a specialist rehab centre around 30 miles from home who said she was suitable, but the funding panel meeting isn’t until 7th June. Two things, mainly what happens if they can’t fund her to go there? Community physiotherapy aren’t bothering to see mum. Secondly, the team who organised this requested 6 weeks as a starting point but can be long term. This feels like a lot, it basically feels like 2013 is going to be a year of mum being in and out of hospital/rehab facility.

Looking after mum is taking its toll, I’m very irritable at the moment. Mum’s CPN came out twice last week to see her because of an investigation going on as apparently somebody involved in my mum’s care who visited her at home stole money from my purse, the individual’s colleague is the one who is claiming to witness this. This person has been suspended from their role and an investigation is in progress. Mum already struggles with carers, district nurses etc coming into our home, this has been a breach of trust.

I’ve been to college recently to discuss university, I’m being pushed into going and I just feel like saying “wait, wait, wait I want to get off this ride” as its like they’re trying to make the decision for me. There is some pressure as the situation at college has become a bit ?uncertain (for want of a better word) as there have been a lot of issues including abysmal OFSTED reports and their recent decision to end provision of the A-Levels course. The latter is a potential issue as staff are leaving to teach elsewhere so if I reapplied I might have issues getting a reference after next year.

It is often a thing that if I’m pushed into something that I panic even if it something that I think I want or know could be/ is good for me. From a health point of view I’ve declined UV therapy and immunosuppressants when I’ve felt rushed-pushed into agreeing and university. It’s weird, I’ll be amenable to an idea then as soon as someone pushes me into it, it backfires. I do the opposite and back out.

It feels the above is a self destructive trait and its been discussed with me during counselling that perhaps I am a little bit self destructive. The way I visualise it is as if I’m drawing a picture and I make a little mistake I will scribble it all out and screw it up. From a physical point of view; I push and push myself out of stubbornness to not go to hospital for asthma, I don’t know if I view hospital as the hard option or the easy option just something that I don’t view as an option. And then educationally, I let things affect me because I think they will. I’m scared to go to university because I’m scared of what would happen. I’m scared to take the plunge. But that in itself is not good because then I’m not progressing.

I have to keep a food allergy diary at the moment because I’m currently seeing a specialist dietician from the Asthma and Allergy service. Except I’m struggling with this. I know what it is for, I know how it could help, they said they’re not the ‘food police’ and to just be completely honest. I have weird food habits, I never have breakfast unless it is put in front of me and there are others with me who are eating it, some days I won’t eat at all then the next day I will eat everything in sight. I don’t like eating on my own yet I don’t like eating with people I don’t know. Then there is the thing of: I already avoid a lot of things I have definite symptoms to so that might leave my diary a bit sparse? There has been discussion a fair few times that I might have a degree of malnutrition, I have severe Vitamin D deficiency for a start which they suspect may be responsible for a lot more than I realise yet I’m struggling to take my Vitamin D supplements because the first tablets were really too big and the powdered versions are making me wheezy but I’m too scared/embarrassed to go back to my GP to ask them to change them again.

It also feels I can’t ask for help with eczema, I’m depressed about picking up 30 boxes of Viscopaste every month along with 30 boxes of tubifast to go over it as well as carrying home my other usual medication. I can’t apply my Viscopaste properly but the dermatologist expects me to because a) I don’t want to come to hospital every day to have the bandages applied and b) my mum used to apply them for me but she can’t really help me with it. I’m just getting wound up with carrying all these bulky boxes home that I can’t use properly and in the meantime my eczema is same/worse. I’m tempted to just stop requesting the prescriptions because then they will see I’m not using it and will ask why.

I just have this overriding feeling of being arghhhhh really bothered- agitated, that is it in a nutshell, rather than around the 1000 words I’ve written!

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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.

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