This is so difficult. Markus came home from hospital yeterday, and slept most of the time. He is very breathless, and woke up frequently during the night to try to cough, or to sit up to get some air. He managed some soup last night, but today only half a glass of milk, and he won't have the intravenous nutrition, although I was taught how to do it. He has struggled for breath most of the day, and only tonight can he manage a bit better. He can't say much, and dosn't want to talk at all - doesn't want to be asked anything, or say what he wants or doesn't want. It's all too much trouble and too difficult. He feels nauseous too.
The mobile hospice came today and gave a lot of information and support. But it was too strenuous for Markus, he didn't really want to listen. They have a 24 hour emergency call service, where you can call and get help and information. They liase with the GP too, so it is really a good service. They gave advice on pain management and management of breathlesness too - but it hasn't really taken effect yet. And I couldn't talk to Markus about it - either the breathlessness or the hospice.
He watches television, and that's about it. In hospital he didn't even do that, so at least that is a plus about being at home, and I can lie on the bed beside him and keep him company or get out of the way into the other room. I even left him to sleep and did a little bit of shopping and got a bit of a change.
But it is a bit of a lonely, confusing, frustrating, sad business. I don't know really what to do to help, and can't get anything sorted out with him as it exhausts him and makes him feel bad. I just have to leave it all to him. I do hope he feels better soon, that the effects of the pneumonia wear off a bit, and that he doesn't lose too much ground.
So that's it.
FormerMember
I,m sorry markus is so poorly and hope he'll soon be feeling a lot better, which will make you feel better too. Love linda
Just to say I am really sorry to read that Markus is so ill & that my thoughts are with you both.
I was wondering whether some moblie oxygen would help Marcus with his breathing & make life a bit easier for him, I believe this can only be ordered via a GP/Doctor prescribimg it for him, or maybe a chat with the moblle hospice, they are sure to know the proceedings to go through, if this can be sorted for him. Thinking of you,Take care, Luv, Tina.x
I'm sorry I can't offer any words of advice, or offer practical help in any way, all I can do hope that Markus improves and wish you the strength that you need to cope through these hard times.
I have been reading your blog and thinking hard. It seems that you are coping with the practical side of things but maybe need more emotional support - can you ask his daughter or sister in law to come and sit with Markus while you go out - this way they will have to see how needy he is and maybe then you can discuss your needs for support - they seem like kind people and I am sure they will want to make time to help if they can? I was also wondering whether you could slip a little nutrition into his peg tube while he is asleep - or would that be difficult (I don't know it is only a suggestion).
I really wish I could be over there helping you and giving you lots of hugs and taking turns looking after him with you !! I would if I could. But honestly we are all here with you wishing him well and you strength. As for work if Markus is ill and needing 24hour care then you will have to get your doctor to sign you onto the sick or something - there will be a way around it so you can stay with him if you want to - or maybe carers can look after him while you are at work? There is always a solution to the problem - or at least a compromise. Lots of love my special friend Jools xxxxxx
