A few weeks ago, my Mum fell down the stairs leaving a thick coating of blood on the carpet which I was able to pick off but not able to bleach out entirely. This was exactly what we were seeking to avoid when we spent several days in January clearing the warehouse-like front room of junk so my dad could have it done up and my Mum could leave the nursing home she lived in over Christmas and live on the ground floor at home, not using the stairs, which she would inevitably fall down.
She’s spent the few weeks since this fall in QA – Queen’s Alexandra Hospital in Portsmouth but having now judged to be medically fit has transferred to Jubilee House for assessment. I had a meeting at QA the week before last to discuss what happened next. She had been “lucky” in the fall. She had broken her nose again but not killed herself. However on the day of the meeting I was told she had suffered a bleed in the back of the brain – a stroke, basically – but they could not be sure whether this was recent or had happened before. I had phoned every day or two since the fall but had not been told about this. I had been told that “they had done all the scans and everything and luckily there was no internal bleeding or bruising.” Which is not exactly the same is it?
A doctor then went to assess her mental capability and found she was capable of making simple decisions like if she wanted a cup of tea or coffee (although this is by-the-by as she is nil by mouth in case she gets liquid in her lungs and catches pneumonia) but she is not capable of complex decisions about her future. Luckily, though, she had come round to living in a nursing home if I could find somewhere for her. So we would not have to argue the point.
My mum has a neurological condition called Pick’s Disease. She is only 67. She cannot speak or eat and has to be fed through a tube in her stomach and to communicate using little keyboard but her left arm has stopped working and she has little strength in the right arm. A lot of what she attempts to write comes out as gibberish and I have learnt to watch her fingers to see which keys she is trying to press and then piece together the one or two words to work out what she is trying to articulate.
She could barely walk but I think that is now gone too. She has now lost her “core stability” apparently so cannot even sit up straight without help.
The doctor asked if I had applied for “continuing care” as she had complex medical needs and I said I didn’t know what it was. It is funding for people that have complex health needs for, say, going to a nursing home. I had not.
I spoke to nurse next. And after some waiting around sat with her as she went through the continuing care assessment form. There were about a dozen categories to be marked A B or C. A being the highest need, C the lowest. She needed so many As or Bs to be eligible. Categories included “Mobility” “Communication” etc. She scored highly.
The next step was she would be sent to Jubilee House for a couple of weeks for assessment to see if she got better. She went there last Monday.
I went down at the weekend and took Dad over in a taxi to visit her.
On arrival a nurse asked if we could get some things she needed like toothpaste, toothbrush, bath cream and clothes. I said I had brought exactly that to her at QA. They had been lost. I also asked what would happen next and she said something about assessment but I picked up on a tone… I can’t remember exactly but I have been through this process at least twice before and know what comes next. I reiterated what I had been told at QA about the bleed in the brain and the loss of core stability. She seemed to acknowledge this reluctantly and said they knew about the bleed the last time that she was there. Well, it was fucking news to me.
I didn’t say that. I went out and tried to find somewhere to buy clothes and remember what size my mum was and get the other bits.
When I returned Dad was sat with Mum, him in a wheelchair as his legs aren’t so good. Mum typed, “HOME” and then “SUICIDE”. I had to explain this to Dad because he can’t see, and he looked shocked. She then added “I FELL” to clarify she hadn’t tried to commit suicide at home. She wanted to go home and die. I said we couldn’t really help with that, But we could try and find her a nice nursing home where she would be looked after and so on.
After she had calmed down, we said our goodbyes. I wheeled Dad off. He wanted to have a word with a nurse about what Mum had said. So I got the attention of one of the nurses. He related that. And then we started talking about the assessment again. This I remember. She said that Mum wasn’t really that different from the last time she was there and they thought the assessment at QA had been too high so she wasn’t likely to be assessed as eligible. I pointed out that she couldn’t talk, walk, eat or sit up straight and asked how much more complex her needs would need to be? The nurse said that she didn’t need a hoist to get out of bed.
She said Mum would be assessed next week. I asked if I could be present for this.
Today, I rang Jubilee House to double check they would inform me of the assessment. Another nurse said that assessment was “ongoing” and so there wouldn’t be one time she was assessed and I didn’t need to be there, but there would be a meeting and I would be told when the meeting was and be able to attend.
As I said, I know what comes next. Because I have gone through this at least twice before and been given the same reassurances over the phone before. What comes next is that I will be told about the meeting at the last minute. At the meeting everyone will say how “vulnerable” mum is but when it comes to it, the NHS will say she is not as bad as all that so she doesn’t qualify for funding on medical grounds, Social Services will say they can fund so much but we will have find somewhere cheap and be means assessed at a later date to see if they can claw the funding back. Dad will say he doesn’t have any money and ask for everything to be “written down”. They will probably cite some generic document that can be sent to us and treat me like I should know everything and I will feel like I am not doing enough to look after them. I will then be given a couple of days to hunt out an appropriate nursing home because they want to boot Mum out as soon as possible.
I am still fucking amazed by the callousness of the nurses at the last meeting before Christmas, when they wanted to boot Mum to go home because that is what she wanted and that is the patient’s right. I was trying to explain the house was a state and she couldn’t go back with her bedroom on the top floor as she would fall down the stairs. I had to beg Mum to go into a nursing home over Christmas, for MY sake, to save me from worrying, so I could get the house sorted. She only agreed to help me.
As it was, when we sorted it out, she lasted a couple of months and then, because she was worried Dad was having a diabetic “Hypo”, she fell down the stairs after dragging herself up to check on him.
My mum is always worrying about others. She is determined, witty, kind and artistic. Unfortunately, she is trapped in a body that has stopped working.
You may have noticed I haven’t blogged much since I last wrote about this last time. I haven’t gigged much either. Now I wish I had blogged every day for the last year and a half since mum set fire to her hair. I wish I had a record of how fucking appallingly we have been treated by the authorities.
Really sorry to read about all this Jim. It must be very hard, hope you’re all doing OK.
So sorry to hear about your Parent’s troubles, Jim – I have fond memories of your Mum with her long black hair (no-one had hair like your Mum!) being softly spoken, nurturing and encouraging of your artwork and intellect. Please don’t feel guilty about not being able to meet your parent’s needs – it’s got more to do with how isolated we are as individuals, families and communities in our current society – we let strangers raise our kids while we work to be able to pay to let them… it’s madness and we can’t go on like this. I hope you can find some kind of middle ground. Well done for all you are doing. P.