I’m Jane, just joined carersuk and looking forward to contact with other carers in future. I’ve been caring for my husband, Alan, for the past 18months, since he came home after 6 months in hospital following emergency abdominal surgery. This left him with a very short bowel which can’t extract enough nourishment from normal food, so he is dependent on intravenous artificial food, administered every night. I’ve now learned how to do the connecting and disconnecting, which gives us much more freedom to plan our lives. It’s also a daunting responsibility. The feed goes into a pic line, which ends up very close to his heart. So as I do the important rituals which ensure sterility in the connecting and disconnecting, I try not to think too much about this scary aspect.
Just wanted to say ‘hello and welcome’. Sorry to hear about your husband’s big op and the consequences you are both left with.
Well done you for coping with the ‘ritual’, many wouldn’t be able to face it.
What are your days like? Is hubby able to get out and about? Are you both able to socialise and do the things you enjoy together? Are you able to go out on your own to pursue your own interests, see friends and so on?
Your life together has changed dramatically I’m sure, but what do you find the most difficult? Any area where the very ‘savvy’ people on here can make suggestions. If it’s general chat you would like to join in with there is a social area for members on here.
Yes it’s hard feeling responsible, and doing it as a ritual helps, my experience is that over time you can get more knowledgable and confident. I realise I often act confident with my partner, but am really anxious. I recently admitted this to my partner and found out he was covering up his anxiety too. It was somehow a relief to have that conversation. It’s somehow odd that over time big difficult shocks and changes, become part of normal life, and not so big, over time?