I am looking after my husband, who has terminal lung cancer. Chemotherapy at the beginning of 2024 exhausted him and he decided with his consultant there was no long term benefits to further rounds. We had a lovely summer with weekends away with the family. He started to go significantly downhill in November. We managed a good Christmas and a Birthday celebration before his mobility completely went. He is now at home sleeping in a hospital bed transferring to a chair during the day.
We have employed a carer who helps get him up in the morning and put him to bed at night. She also does our shopping and comes as needed. We are very lucky to have found her. She makes it possible to live our lives as best we can. We also have many visits from family and friends which keeps us in touch with the outside world. Family are really supportive and provide practical help.
I try to get out at least once a week with friends or to do something. This helps keep me sane. We have realised that in order for me to care effectively it is crucial for me to get enough sleep and to maintain outside interests. A family member stays with him with the carer on call or sometimes the carer comes. We are fortunate enough to be able to afford care as needed although we have not got a bottomless pit of money.
Recently we have both been struggling with sleep. My husband calls me repeatedly through the night. Neither of us are sleeping causing both of us to become uncharacteristically bad tempered with each other. We have had a long and happy 26 year old marriage with very little conflict. So we are both upset with ourselves and end up feeling guilty for putting the other under pressure. Together with GP we are working out his medication so hopefully we can both start sleeping again.
Anyway I am posting this to share experiences to all you carers out there. It has helped me to read your posts and hopefully our experience will help some of you. As carers we need to look after ourselves in order to have strength to look after our loved ones. Honestly this is the toughest job I have done in my life. It breaks my heart to see the strong husband I had suffering and being so vulnerable. It frustrates him dreadfully that he's so dependant. We have a long and tough journey ahead.
