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.   .