So here we are ....

Hi Marje

Hang on in there - you really are doing so well. Are you still managing to get a bit of a break? Is there someone who will sit with Tony so you can go for a coffee or get some fresh air? I know it feels harder to leave them at this stage but just a short walk or a coffee with a friend may help a little?

I got to the point where I offered to sort out David's pills for him. At first he was a bit tetchy about my offer but soon afterwards he asked me to do it and I carried on doing them from then on. He also became very quiet and subdued, and a bit muddled at times. I don't know how much is the drugs and how much is the body's response to help the person to 'distance themselves' from what is happening.

Just know that we are all here for you.

Big hugs

Rosy xx

Thanks, Rosy, it sounds as if what you experienced was quite similar. I do go out for short whiles, especially while he's asleep, and we do have friends who would call in or sit with him, but so far he says, "I don't need a babysitter!" Most mornings I set him up to have his breakfast and then go out to fetch his newspaper. I often extend the walk a bit, as we live in a lovely rural area, and that's a refreshing start to the day.

I'm due to go out today, to a rehearsal of our new (and truly dreadful) village choir, but may not go. Sometimes it does me good, other times I'm just too shaky and unsettled to spend time in a group of people. I need to collect prescriptions, but several people have offered to do this for me. People really do want to help, and I'm ready to ask them when we need it.

Marje

you are going through the toughest of times. The transition from palliative care through to end of life is almost impossible to describe or instantly recognise. Nobody can prepare you for it or tell you how to deal with it but we can just let you know how it was for us.

It's Just little changes that make you aware things are not going to get any better. I am fairly sure that Tony will know this and either show it openly or just sub consciously, if I am honest I think those little moments of confusion or irritation are the things that let you know he is aware but dealing with it. Although as Rosy says maybe the body itself starts to prepare. To me it sounds as though you are doing a truly wonderful job, Rosy makes a great point, sometimes retaining that little bit of independence or control is so important. So Tony may like to try and manage his tablets himself but maybe he will ask you to just check or gradually take over.

In Mick's case it was about being as much in Control of what happened as possible and his ability to choose. That could literally be a small thing like choosing what he wanted to eat and when , or a much bigger thing like if he wanted more treatment or not, for example, he opted not to have any more blood transfusions because they became uncomfortable and just too much effort for him and he didn't feel they were helping any more.

Trying to tell family and friends who were visiting what to expect was so hard, Every time I did it the words just choked up in the back of my mouth. Also communicating to so many people about how things were progressing became a personal struggle for me. I found it very hard to not make it all sound positive and much better than it actually was. I think I was scared I would put them off wanting to visit or that they would not be able to cope with the reality. In truth everyone was fine (at least outwardly and that is what mattered) it was probably more a case of me willing Mick to be Ok and thinking if i said he was not so bad maybe he wouldn't be. Sounds daft now but it wasn't to me at the time.

I was also incredibly fortunate that my lovely step daughter was totally supportive, not just for her Dad but for me too. Karen took on the communication with our less immediate family and some friends which helped me a lot. She is still a little rock for me now.

In fact friends and some family and indeed this forum , were the things that gave me strength and comfort so I hope they all will for you too.

Wish I could give you a great big hug and go for a lovley rural walk with you. You are in my thoughts every day.

all my very best wishes

xxx

Mo

I knew David would hate to be 'babysat' but have to confess to a day I was desperate for a hair cut but didn't feel happy to leave him. I phoned his sister on the sly and asked her to 'pop in' at the time I needed to leave. So when she arrived I was 'surprised' to see her, explained I was just going out but that she could come in and have a cuppa with him. If he guessed he never said so!