Visitors in hospital

2 replies
34 subscribers
142 views

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

Daffy635069 21 days ago

What you are going through sounds really tough and it must be hard being away from your husband and following his wishes. As you say, you know him best and know how he will feel about things.

I’ve also found that it is the seemingly unimportant things that have really upset me over the last few months.

When my husband was in with sepsis following chemo, it was the HCA telling me I couldn’t just take his lunch to him (there was nothing he could eat that day and he is supposed to be bulking) as it was a protected mealtime. I explained really calmly that I simply wanted to drop his dinner to him whilst it was warm and then I would leave until visiting hours, but she spoke to me as though I was trying to break a rule. That interaction broke me despite having dealt with months of heart stopping things to do with this process.

I also find that my husband’s CNS often says something that makes me feel as though I am in some way doing things wrong. It is really tough the amount of things we, as carers, have to monitor and carry out as part of treatment, alongside the agony of seeing a loved one so poorly.

You sound to me as though you have put your husband’s wishes ahead of your own feelings and you are doing the best that you can, given the impossible situation you are in. Trust what you know about your husband and as hard as it is, try to put what the CNS said to the back of your mind. What matters is how you and your husband feel.

Hoping that things go well with his treatment and that you can be back together soon.

Take care x

Mumonamission 21 days ago in reply to Daffy635069

Thanks so much for your reply Daffy.

It is strange isn’t it the things that break us in the end. You taking your husband some lunch that he might actually eat and was still warm was a lovely gesture and probably just what he needed then. To be made to feel in the wrong showed a lack of understanding from the HCA.

I know I’m possibly over sensitive at present but we are all supposed to be on the same side. I wouldn’t think of accusing staff of letting an infection rip through their ward resulting in it being closed down and making them feel guilty!

My husband feels he isn’t in control of much at the moment but one thing he can control is deciding who visits him and when and how he wishes to maintain contact with people outside the hospital.

We have decided to stick to what we’ve been doing and wait for him to decide when he wants visitors.

Thank you again Daffy

More from this forum

Visitors in hospital