Saturday, 12 July 2014

Hospice Stay

This week I have been on a respite break at the hospice. But unlike previous breaks, I have my live-in carer, Kadvi staying too. I first visited the hospice in 2008 shortly after my diagnosis of a terminal illness. Despite all the positive press about hospices being wonderful places, this counts for very little when it's YOU that has qualified to use one. Ultimately hospices deal with end of life.

If you read my previous blogs during hospice stays, you'll know that I feel out of place here, it's not for me. And this time I feel positively fraudulent!!  This is because the longer I keep beating the survival odds, the more convinced that I will be around for a good few more years yet. I guess I feel I have now disqualified for hospice eligibility.

If this is true, I guess it's good although it will make any subsequent re-qualification difficult to accept. I just find the whole environment rather patronising. The way everyone talks to you, medication confiscated so you have to request it, having to have hospice staff oversee every hoisting routine. I find it difficult because despite MND I have refused to relinquish control of anything. I know kadvi finds it difficult too. Don't get me wrong, the staff are all lovely and the hospice and gardens are wonderful. It's just not for me..... Yet.
However we have actually spent little time at the hospice. On Wednesday we went to Hampton Court Flower Show, yesterday we went to Painshill Park and the local pub in the evening,  and as I write,  I am sitting at Newlands Corner viewing the Surrey countryside.

It's been 3 years since I visited the flower show but having the live-in carer, events like these are possible again. It's a bit of a struggle getting the wheelchair through the crowds and much of show requires going off the path onto bumpy grass, but it was a nice day.

Painshill park's paths have improved since my last visit, 2 years ago, so getting around was easier than expected. I might even buy membership next time

The decision to meet Adam in the pub was a spur of the moment thing. I don't think I have been to a pub for over 3 years, probably mainly because of previous bed time limitations as much as the unappealing prospect of watching everybody else eating and drinking. But actually it was very enjoyable. My sister and Kadvi joined us until 9.30 then Kadvi returned with my car at 10.30. I think I will do it more often.

So ironically, despite my earlier comments and with Kadvi's considerable help, this has been the easiest hospice stay. But I think I will look seriously at coastal, disabled accessible and equipped holiday accommodation. Obviously it won't be free like the hospice but it would give me a base to go out from to new places. If I find a good place, I might even do it more regularly . Next weekend we are going to see 10CC (showing my age), going to Farnborough Air Show, and seeing Monty Python at the o2 arena. Phew.



Anonymous said...

Hi Steve,
Its about time I let you know again that I am keeping am eye on you and all the great stuff you get up to, its been absolutely ages sine I was last in touch for which I apologise - me apologise - that's a first!!!
I have only just read your blog about going to the air show - such a shame I didn't see this blog last week, as you know I used to have a thing or two to do at the Air show and of course the company still has a big presence there.
Anyway hope you had a good day at the show and took your ear plugs with you!!
I am looking forward to seeing some of your pictures from the Air Show as I suspect no one from Communicor will bother to send me any!!
Anyway behave yourself and don't go getting upset with people parking in disabled bays - they are just complete unthinking selfish idiots of which we seem to have increasing numbers in our society - don't get me started!!
Best regards and big hug

Graham said...

hi Steve
Still reading your blog
10cc sounds cool!!
I'm not on love etc
Take care