Hello,I am reading your post and it sounds exactly like my husband and myself, I am 70 years old next week and my husband is 66 years old, he is on oxygen 24/7, nebulisers, antibiotics three times a week every week plus emergency antibiotics on standby, goodness knows how many tablets. My husband is also end-stage, this does not mean he is going to die soon, just that he is getting all the help there is out there so now has to live with it.
I am finding it difficult because my husband is domineering and expects everything to be done for him, does not want someone to sit with him so I can go out, now the dietician wants me to make him meals every two hours as if I haven't got enough to do, because he is losing weight and muscle (due to the fact he won't get off his bottom and do anything) so he has no appetite.
We have had a young man come to the house from Mental health to talk to him about his worries and he asked me how I am coping, I told him I would be fine if I hadn't been stuck in the house 24 hours a day for the past 13months. He asked my husband why I could not go out and leave him and he said, 'I am not stopping her'.
Do you have a community matron, we call her our angel, she will tell you anything you want to know about the help in the area, I could not take her up on it as my husband does not want anyone interfering in our lives so I am now stuck with him on my own day in and day out. We have been married 50 years and he has had COPD/Bronchiectasis since 2008 and to be honest I don't know how much longer I can go on, I have lost 3 stone in weight through stress and running up and down after him. Our sons are throwing me a big party for my 70th next week and I just don't know if I will be able to go as my husband has told me that if he is ill we can't go and he has said if I go on my own he will never forgive me.
Please, please don't be like me and become a carer who begrudges everything she has to do because of his demanding and nasty ways, source everything on the web and the BLF, the quality of your own life depends on it as if you are ill, what happens to your husband. It is too late for me as I am stuck with it, I sometimes wish it was all over before it kills me.