The other thing I didn’t do straight away I think was I was offered two hours respite by the palliative care team and that was marvellous [laughs] because Mum had another face, which is important. We had sort of carers coming in to help with her personal care but they that was very brief, these were people we didn’t know terribly well. Very nice people, very willing and helpful but they tended to come in, do what they had to and leave. So I couldn’t sort of guarantee they’d be with Mum an hour so I couldn’t pop out to the shops or anything. So I didn’t find that part of it terrifically useful, particularly, as it didn’t, well, it couldn’t possibly fit in with what when mum wanted to get up and when mum wanted to go to bed. You couldn’t fix a time for those sorts of things so it was that that I didn’t find that as useful but the two hours respite during the day, that was a time I could have where I could go and get things organised and I didn’t have my focus on Mum. So and that was that was really, really very useful. So in the end I got one of the carers to come in and do what someone that had been looking helping mum with her personal care for a very long time, I got her to come in and do lunch for her and spend two hours with her and I put it back to back with the respite. So I could go out for a whole four hours a week [laughs].

Which was very useful, yeah. And I wish I’d actually, organised that sooner.

Can you tell me how you found that, having that care, that respite care? How was it for you?

Well, it was essential really [laughs]. I didn’t think it would be, you know. I thought it would be a nice break for Mum but as it turned out, it was a very good break for me. I mean I could go off and have a nap if I wanted or sit, you know, by the sea or, you know, have some time, you know, shopping, you know, where I had a bit more time, rather than, you know, hit and run [laughs].

Yes.

Sort of shopping I could actually, you know, plan things a bit better, you know. So it gave me it gave me a good, good break and it was in the middle of the day. In the middle of the day seemed to be better for us because I think we had, I felt we had sort of getting up and going to bed sort of fairly well organised. But in the middle of the day that was when I felt quite tired because I hadn’t had sleep and Mum would either be asleep or, or I’d be making her meals or that sort of thing.

And I think you do need to be very clear with the hospital and I think you have to be much more proactive with hospital staff because it seems to me they’ve got a lot more distractions. And the understanding I felt on an acute ward about terminal illness was, was lacking I felt. They didn’t really understand, because we had limited visiting and under no circumstances would they relax that. So that’s why I was quite pleased to get her home because it, you know, I didn’t want that to carry on for too long. Yeah, I, I just feel that nobody seemed to appreciate that that, you know, that how ill she was and, and what she was going to need.

Did you feel that the care was organised or were you the sort of at the centre gathering bits as you could?

I think you have to be quite proactive yourself. You have to know what to ask for. The other thing is of course, people will tell you things but it’s a question of if they say this only once it’s not, not necessarily going to get, you know, you’re not necessarily going to click, Oh, actually. I do need that You know. I made lots of lists and the district nurse liked quite like encouraged me to do so, so I didn’t feel I was sort of being bossy or, or anything. She was very, very good about, you know, offering and she did offer things I hadn’t thought of, which helped.

So just talking about it seemed to sort of bring that out. So I think the visiting was important. The havhem having time to talk to me was important you know, and also giving me time to sort of gather my thoughts about what, what we do next. And I did ask a lot of questions and you know, I did try and I didn’t want to, you know, I tried to make best use of the contact times. That that was my aim because I didn’t want to always be on the phone about this, that and the other so I did always look at other ways of getting answers if, if I felt I’d been overburdening one service. Yes.

She wasn’t initially in any pain. She was, she had discomfort with her breathing. She needed to be on oxygen all of the time even when she was lying in bed. So if she had to take her oxygen tubing off we, it couldn’t be for very long, so getting dressed and, and things like that were something that had to be done quickly. And it was a question of sort of preparing for that, having everything laid out ready and, and knowing which arm was doing what and so that I could get Mum’s sort of oxygen back on quite quickly.

Because it was it was just sort of trying to keep things normal, picking out your clothes. Mum liked to be neat. She, she, you know, would always want to get dressed in her clothes and it was only when she was very ill that she, you know, felt, at the last sort of week of her life, where she didn’t really want to do that so, quite so much. But we were able to put the necklace on and colour coordinate and decide what we were wearing tomorrow and, and do mother and daughter things.

You know, and that was very important.