To always be there (at the hospital)

[BecauseIlovehim]

My DH may not have long to live. He was admitted to a small local hospital recently to get to grips with some medications and I hoped to have him home by now

visiting is from 8am to 8pm. (But I was told I could be there after this, only once have I been there much much later and it was his day from hell). I’ve never managed to get there before 10am, and most days manage to leave for a few hours as he sleeps a fair bit in the afternoon.

he’s very scared about his current situation, he’s very much aware of his medical state, and is definitely with it.

unfortunately he’s bed bound, can’t stand, can’t get to the loo, he could do all of this two weeks ago.

he’s in a lot of pain, and I do things with him to help with that pain, ie massage, chat and help him bathe etc. anything to distract him.

but I just get the feeling they think I’m there too much, but he wants me there, I am happy to be there, can be there, and I come home and get a good nights sleep. (Maybe not tonight). He’s in his own room so we are not inconveniencing others.

so much goes on where he misses meals because he’s asleep due to medication, things like he chose something that needs eating the moment it’s presented (have asked them not to give him things like that now), so knowing that I’ll take something in when perhaps I wasn’t going to go back. I’m lucky as it’s 7mins from our house.

daily random stuff happens and I don’t leave when I was expecting to because to leave at that point would be cruel, so I stay, I help, I make him comfortable.

there was a comment made tonight by one of the more senior staff about his anxiety and about needing me, but this is a man who is fully alert to his possible end of life,

I just need to ignore that comment don’t I?
plough on through and give my love the best I can in the circumstances.

using this post as somewhere to chat, because oddly I can’t sleep tonight and too late to speak to those that care about him. Thanks for reading.

do what you think is best for the both of you OP. don't worry what the staff might be thinking, they are probably not thinking what you imagine they might be. Would it be appropriate to involve palliative care if thet are not already seeing him? I am sorry that he is so poorly, he's lucky to have you at this time

I’m so sorry for your situation. If you feel having you there is beneficial for him, then absolutely be there. You know him better than anyone. Lots of love.

You absolutely do need to ignore that - and be there for him as much and he needs and you can cope with.

Could it be the nurse was concerned about your well-being and thought you needed a break, rather than judging you for being there so much?

Either way, do what you're comfortable with - and I'm sorry for what you're going through 💐

Echoing the above poster. Do whatever you believe is best for both of you. As you describe it, you are not inconveniencing anyone else’s treatment or care, so don’t worry about what staff say, or overthink it. Of course he is anxious, he is end of life aware. Can you discuss some anti-anxiety meds for him with his treating team, no shame in using them in this situation, it’s literally what they are for.

Just wanted to echo what others are saying: do what's right for you and your husband, don't worry what anyone else might think or say. Look after yourself too, you need to keep your strength up x

The only way you can be there for too long is if you or your DH think you have been there for too long.

Your DH is the patient so he gets to decide how long is too long.
You are the carer so you get to decide how long is too long. This is one of those ‘take care of yourself first so that you are in a fit state to take care of others’ moments.

I’m so sorry that you and your DH are going through this.

Was the senior staff member middle aged,? I only ask because my mum trained as a nurse in the 70s and she herself had a fairly serious autoimmune condition with semi regular short hospital stays. If we were visiting her at a time when a nurse/doctor had to check her vitals or speak to her she absolutely insisted that we go outside the room until they were done, and I think she'd be horrified at the thought of one of us there all day long with her. It's just what was ingrained in her from her training so maybe that staff member is similar?

I'm so sorry you're having to go through this, absolutely be there wherever you want to be.

I'm sorry to hear things are so difficult for you and DH.

You do what is right for DH and for you. Nothing else matters and if anyone (including hospital staff) makes any comment then just ignore them and continue as you are.

I send you my very best wishes.

Thank you all. Can’t be too outing as there’s a lot more going on than I can really say.

i am getting plenty of sleep, just not tonight, they are definitely looking out for me too, not really come across this member of staff before. I have left on a couple of occasions when I was exhausted, and before I felt he was totally comfortable- but knowing he soon would be. I’ve also had an event one evening when I didn’t go in.

I'm surprised and sorry you are getting vibes that you aren't wanted there.
I wonder if it's more that hospitals are very busy places and it can feel like you are inferring or getting under the staffs feet (I doubt you are!) Hospital staff have to deal with the general public often at their worse, they work long hours, and I think sometimes they can get a bit jaded and unsympathetic.

The only thing that matters is spending time with your DH and supporting each other while you both go through this time.

In my experience nurses and hospital staff are often too busy to tend to patients properly, and if you are in a private room you can often be forgotten so he'll be benefitting from your practical as well as your emotional support.
Losing someone is so hard and as painful as this bit is, you'll get great comfort from spending these days and moments together.

With all due respect, fuck them. And by "them", I mean ANYONE who says anything about what you are doing.

Your DH doesn't have an anxiety issue, he's dealing with dying and not being cared for properly by the NHS.

This makes me so angry. MIL had the same experience. My DH and SIL ended up basically staying with her right up to the end.

We leave tomorrow. A chance conversation his doc had with a colleague in another hospital has found a better place with some treatment that may help too. Keeping my fingers firmly crossed and praying like mad it’s going to be ok.

I’m glad they are moving him. I was going to ask is there a hospice he can go to. Usually more relaxed with visiting hours and not as clinical. Hope the new treatment helps

You know him better than anyone. They're probably trying to protect you too you do whatever you need to do

Moved today. Already on new treatment. It’s not as close but there’s a good chance it’s life extending which although he’s really not very well we are hopeful for. Thanks for all your replies. I’ll leave this post now.

My final post because I hate being left wondering.

Life saving treatment looks like it’s worked. He is being discharged home in two weeks time when he’s done his physio and is eating properly under the care of our local consultant and a team of coming to our home carers with a view to living a normal as life as possible.

That's a wonderful update OP (and thank you for it!).

Best wishes to you and your family for the next phase.

Thank you for taking the time to update when you have so much else going on.

I am so pleased that the news is positive and I wish you and your husband many more happy and healthy years together.

I am rooting for you all - found your post really touching OP xx

Do what you think is best for you and your husband.

Absolutely ignore those comments and I would respectfully suggest coming up with a few acidic retorts for those occasions.

Private rooms are all very well and I know it's probably the sickest who get them but I do wonder how the patients get on when nobody is there advocating for them?

Don't you change a thing and make the most of the time you have left with him xx

That's amazing news, have a wonderful Christmas, wishing you both every happiness xxx

Wonderful news! I hope you and your DH have a lovely Christmas.

Actually i would speak to the staff and tell them why you are there abd tell themhow they are msling you feel. Or contact pals. They are very good

Just seen your update. Bloody wonderful. Wishing you all a fabulous Christmas 🎄