My husband has been in hospital for over 2 weeks now as he has been receiving CAR-T cell therapy. We were warned that this would make him very unwell and it really has. Visiting has been limited as there was an outbreak of a virus on the ward, so it’s been closed to visitors.
He’s had repeated infections and a fever for over a week. This and the treatment has taken everything out of him.
We’ve been managing contact by him calling me several times a day when he feels up to it. They are very brief conversations as he tires so quickly. He has been adamant from the beginning that he doesn’t want any visitors. He finds the effort of talking and/or listening exhausting. He said he didn’t mind me visiting but it wasn’t necessary especially as I don’t drive and need to get a cab. So this has been his preferred method of managing things at the moment.
Today I had a really strange conversation with his CNS. She said that she felt that my husband would really benefit from visitors. I asked her if that is what he’d told her but she said no, however we do find patients feel happier with visitors?
I explained that this is really my husband’s decision and perhaps we should respect his wishes. I reminded her how tired he was and that he would often fall asleep within 20 minutes of me visiting. She replied, well you can stay with him while he sleeps. This isn’t what my husband wants and I’ve known him for 50 years now.
I had been in to see him before the ward closed and a couple of times to drop off and pick up laundry. I did a FaceTime with him while I did that.
This nurse has made me feel so guilty and more stressed than ever.
It’s strange that after everything we’ve been through over the last couple of years, this is the thing that made me cry.
Sorry for this moan and in the grand scheme of things it’s not so important but the nurse’s attitude has made me feel dreadful. I’ve been with my husband every step of the way during treatments and appointments and I will continue to be here for him.
Look after yourselves xx
