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
hasnt it Pat but I just wanted to add my words too, you have been very supportive to me and it is much appreciated, I do hope Markus will soon be feeling a little better, Us carers have a tough time in a different way dont we, when my Steve was first diagnosed with throat cancer I thought is was the end of the word mind you the consultant actually said to me , that " look he is getting on for 82 this wont kill him it will be something else that does that" not really much comfort when I see him suffering though.
Just wanted to say I'm thinking of Markus and you and hoping things improve soon. I can understand how isolating and tiring it is, and how worry when Marucus has been so poorly.
You and your Markus are in all of our thoughts and prayers. I live in Yorkshire and feel fortunate to do so, but I yearn the Spanish sunshine and the mountains.
I feel your pain! Sometimes there are things you can do that are more subtle and quite different from what you used to do as a couple and partners. See if you can sit on the floor and warm up so lotion in your hands and just massage his feet and hands. "Touch" can be very powerful at times like these.
Let him know when you notice small improvements how much better he is doing, though you understand he still feels like crap.
Cyber hugs big time coming from across the Pond. It is incredibly difficult to be available to help and yet feel completely helpless. Sit with him as you have and just hold his hand.
Ive just read your blog about markus....Im so sorry that he has been so poorly. My thoughts are with you both. I am wishing for him to be strong & get better soon. You are both special to me as you were one of the 1st people I spoke too on WN.& you gave me such hope & stength for the future, with Marcus having a similar cancer to mine. I cant say much more as everyone has said it all in their wishes to you........but you Take Care as well.
