Skunk Anansie and American Idiot

With all the stress of the weeks preceding Christmas I didn't mention the 2 other shows we went to. The Friday before the hospice we saw Skunk Anansie at Brixton Academy which was excellent. The singer, Skin, still has one of the best rock voices and remained note perfect even during her various crowd surfing sessions. She sang one song standing on the mixing desk having first walked across the crowd's shoulders to the back of the venue. Another song was sung from the middle of the crowd after getting around a thousand fans to sit on the floor!







We hired a driver again which allowed us to be dropped outside and picked up quickly after. The 45 degree ramp into the venue is always daunting but the staff are brilliant and helped us from the car to our seats and back again afterwards.

Then on the Sunday during my hospice stay, we took the boys and my mum to the musical American Idiot (based on the Green Day album). Although Billie Joe Armstrong wasn't performing in any of the UK shows, it was still excellent and confirms what a good album it is.

Boys' Talent Show Performance

'One of Them'?

Having read my last blog, the nurses thought I would like to go to the hospice's Christmas party! I didn't have high expectations but thought that at least I should make the effort and they took me upstairs to the afternoon session. Picture the scene; 12 people sitting in a circle, predominantly over the age of 70, some with blankets on laps and all with an instrument to shake or bang. Yes, there was going to be a happy clappy sing along session. And there was me, 30 years younger, wearing my Pink Floyd T shirt, thankful I had a rock solid excuse for not being able to join in!

This is what someone who is serving a prison life sentence, knowing they are innocent, must feel like. I shouldn't be here, I don't belong here, I am not 'one of them'. Call it denial or a survival strategy but I just won't accept it. And it is intollerably and desperately depressing to know that I have to eventually accept that I am wrong.

What's going on

So, as a result of things reaching a crises point last week, all sorts of wheels were put in motion (some very unwelcome). One of them was reassessing my care package. Between the hospice, care agency and NHS funding department it was decided I should have a live in carer. This on the the face of it sounds good, and from my care point of view it is. But having a carer in the house all the time is understandably intrusive for Tracy who finds their current presence levels stressful. So if the arrangement is to work we need to find an appropriate solution!


Next they decided that all transfers including toilet transfers required a second carer because they wouldn't allow me to use a standing hoist anymore and full hoisting requires two carers! So they wanted double up carers at 4 specific times of the day to cover bed and toilet transfers. This would negate any advantage of the flexibility of the live in as I would need to be at the house at specific times to use the toilet, not to mention the expectation for me to crap on demand!

However I insisted they assessed using standing hoist at the hospice which is better than mine. Thankfully they agreed so I only need two carers for bed transfers although I now have to spend £2500 on the new hoist!

But until it arrives (upto 4 weeks ) I need two carers for all transfers. And there lies the reason why I am stuck at hospice until Monday; having insisted on these new conditions, the care agency don't have sufficient carers to delivery it until next week. So they basically said either stay in the hospice or be cared for at home but in the bed! Needless to say, being told this an hour before being due to go home pissed me off no end.

You might be thinking, what's the big deal? Well it's soul destroyingly boring here even by my tedious existence standards. There is absolutely nothing to do for the 7 hours between carer visits. I can either stay in my room and watch tv without being able to change channel or sit in the coffee shop and listen to people discuss their relatives funerals. I opt for half and half. It's tolerable for a few days but not for nearly a fortnight

The hospice staff have all been lovely and have tried their very best to sort out everything

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The latest...

I am stuck at hospice until Monday now, almost 2 weeks, not happy. I will explain tomorrow but almost 2 weeks here is mind numbingly boring, even by my tedious existence standards.




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The Current Situation...

Last Wednesday I came into Princess Alice hospice for a week's stay. It was the culmination of me feeling very unwell for several days and Tracy reaching a point where she was struggling to cope with everything. We had recently discussed respite options and although I wasn't keen I had agreed to discuss it further with my hospice contact with a view to go in January. Unfortunately she went on long term sick leave so events overtook us. Tracy wanted me to write something here as trying to update everybody is exhausting!


Basically after 5 years of living like this, things need to change. Although my care is done by carers, Tracy is effectively a single parent to demanding triplet boys and still has the emotional burden of my situation and that's not easy. It's difficult enough for the boys losing their dad so we had to review everything to make it easier for Tracy to provide the upbringing they deserve.

There has been a suggestion that I should consider full time residential care home. But I am bitterly opposed to it and I know neither Tracy or the boys are keen on it. The other option is trying to increase my care package and have full-time carer during the day and also have frequent respite breaks at a care home. There is no guarantee this would be available and it's still not ideal; Tracy already finds the carer's presence extremely intrusive so all day carers will only be more so, and I don't relish the thought of being in a care home regularly, but we both know there simply isn't an ideal option and compromises are unavoidable. Ironically I don't think Tracy has had much of a break since Wednesday because of all the meetings and discussions with the hospice and social services services etc.

So I have been here 5 days. I won't pretend it's great here but with my own carers it's been ok. I am going to keep pushing for a similar arrangements for future respite, I must have been dealt with by at least 20 different nurses so far, so a hand over period just isn't realistic. Everyone keeps saying that information gets disseminated, but they just don't get that things need to be shown. People just can't appreciate what it's like to be completely helpless AND have no communication.

I think I am feeling better (it may just be the result of being dosed up on ibuprofen and antibiotics) so hopefully returning home this Wednesday.   .