Going around and round in circles and back to square one – sort of.

A lot has happened since I last posted yet I’m pretty much back to where I was when I last blogged. It is disappointing, worrying and frustrating.

In the past month, my mum had an operation to drain a haematoma on her brain after it suddenly got worse which meant she had to go into emergency surgery. I cannot describe how terrified I was, I wandered around the hospital through the night because I couldn’t settle, she came out of surgery and I was surprised that she was awake as she wasn’t conscious when she had gone to surgery, she was a bit confused and sounded a bit strange when she was speaking to me- she also hadn’t realised that she had had an operation and this remained the case for a few days, my mum’s CPN came to visit her and made her feel her head so that she could understand. It was also really odd, I suppose distressing- to see what they had done to her- like shaving some of her hair off and I know it sounds silly because hair grows back but I wasn’t prepared for it, especially as the surgeon said previously that it would be minimal.

Mum had started to recover very well and was discharged home on 4th April with a severely lacking home support package, no physiotherapy or occupational therapy had been arranged in advance so mum struggled, I struggled too to be honest as I wasn’t well at the time and there was discussion about whether I needed to come into hospital as a day patient for a few days for IV steroids as I had point blank refused to come in as an inpatient and I was adamant that high dose steroids and lots of nebs would suffice. Under normal circumstances this arrangement would have been fine (admission or lots of nebs and steroids) however with mum being discharged the same day the former was not an option and the latter turned out to take longer to work as I was so tired and worn out from doing everything mum needed doing.

Last Monday (08/04) mum had a fall at home when the support workers came to mobilise her, she was taken back to hospital where they found she has two new subdural haematomas which for now they will treat conservatively. I am distressed and angry that she wasn’t supported enough at home and the possibility that she was discharged too soon. There is a lot of uncertainty again, mum’s not mobilising at the moment, and she has had bouts of vomiting, won’t eat at all. They keep questioning if she has an infection but again why was she discharged if that was the case. Some people think mum might not be able to come back home, that she might need a different environment more suited to her needs. I don’t like to think about this, part of me feels like she has given up and this is frustrating. In addition to all of this some of her medications were vastly reduced in dose due to post-operative risks of seizures etc. which has meant her psychiatric problems aren’t great at the moment so that’s another thing to throw into the mix. I don’t know what the plan is and I hate not knowing where I stand.

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