Mum and dad in hospital (long, sorry)

[exLtEveDallas]

Having such a shit time and I don’t know if there is anything I can do.

Mum was diagnosed with cancer 8 weeks ago. She’d been complaining of pelvic pain for months, but was pretty much fobbed off with ‘it’s your age’. Palliative care only, doc told her he’d ‘try to get her to the summer’, dad pretty much doing everything for her but she’s barely eating and drinking and failing fast.

3 weeks ago dad had a fall and ended up in hosp. Went completely demented within 24 hours in there, hallucinations, conversations with dead people, reliving past (like 60 years ago) events. Care pretty awful tbh and I’m
considering a proper PALS complaint . Eventually last week diagnosed with UTI, on antibiotics and becoming more lucid. However 3 weeks in bed and catheterised means he can now barely walk and isn’t continent.

Mid week my sister discovered mum collapsed. Now hospitalised and drifting in and out of consciousness.

Both in same hosp but 2 different blocks. Dad can have visitors, but only one a day and it has to be booked to ensure no other visitors are on the ward at the same time. Initially the same for mum, but they wouldn’t let dad in because he couldn’t go on his own and on Fri they closed the ward to all visitors, so now no-one can go.

Hosp won’t let dad see her at all and he is becoming more and more distressed and is now not eating or drinking.

It seems inhumane. 60,000 unrelated footie fans can go to a match, I can go to a pub. But my mum and dad can’t see each other after over 60 years of never being apart, I can’t see my mum, and we face the real possibility of both of them dying alone.

Can anyone advise? Give me any ideas of what I could do about this? It’s also really hard to speak to anyone when visiting dad as we only get an hour and of course I understand the nurses etc are all really busy. The ward phone gets answered eventually but 90% of the time any questions are “have to ask the doc/consultant... not done rounds yet....”

I’m at a loss, and I’m aware that all the above seems very ‘poor me’ but it’s hit me for 6. They are very elderly, I knew it wouldn’t be long, but the speed in which it has all gone wrong has knocked all the stuffing out of me.

So sorry you are going through this. My parents were both in hospital at the same time. Influenza on top of pre existing conditions.

It was a nightmare trying to communicate with the staff. On one occasion the hospitalist doctor took me aside and told me we should withdraw care for my Dad and get him into a facility because he had C diff. He had an accident on the floor and she said they couldn't have that there.

Really? He caught the C diff there.

We almost never spoke to the doctors. It felt like we were totally in the dark.

In the end they both died, four days apart. We did manage to get them into the same room at least.

It was a tough time. I hope things get better for you. Absolutely fight for visiting rights. We were able to advocate at times, which helped.

Thank you for all your messages, and I am so sorry that so many of you have gone through similar. I feel so hollow at the moment, it’s just such an awful situation.

I'm wondering whether there is a MacMillan nurse or patient advocate who might be able to support your case parents and help with communication.

Make sure you eat and drink enough. It is easy to neglect yourself. You need the energy to get through this. Also, sleep. My siblings and I had to make sleep a priority as you want to be there all the time.

Take care.

Hi, just a little update. After a phone call with PALS on Monday and taking advice, I put my complaint in on Wed. It took that long for me to be able to formulate the words tbh.

On Friday we were told that mums ward had reopened and that I would be allowed to take dad over to see her that evening. Unfortunately by the time I got there he was in no state to do so, he has deteriorated so badly. Instead I was able to visit mum and it was a wonderful hour of her chatting, laughing and crying before she fell asleep again.

This morning she has been moved to the same ward as him! They have been able to visit and whilst dad barely knows who she is, she knows him fine ❤️

I don’t think it will be long now, but I am very appreciative of the advice you all gave me, and very grateful that they have finally had time together. I don’t know if my complaint had anything to do with it, bloody Covid has a lot to answer for and I’m still furious that it took this long; they’ll never get that time back, but too relieved to let it consume me.

I'm so glad that you have been able to see them both and they've been able to see each other.

So glad to hear they are together. It must have been incredibly hard. I imagine your complaint brought it to the attention of a senior person on ward management level, worth it, but so stressful for you.

Take care and I wish you and your family all the best. I hope you can spend some time together for as long as possible

I'm glad your mum and dad are able to be together

Very late to this thread. So pleased they are together.

Reading what people have been through is truly awful 💐

That's lovely news. Hugs to you it shouldn't have been that hard.

Have a think and a chat to your siblings about treatment decisions. If your Mum only has weeks anyway, at his age it may be kinder to let them both pass away at a similar time rather than really medically fight for your dad just for him to end up alone and bereft in a care home with poor recovery prognosis. Just better to have talked about it as it might end up being one of you having to make a 2am rushed decision.

Obviously get your Mums thoughts as well if she is well enough.

So glad they are together again x

Hi, just an update. Dad died yesterday. We were able to be with him, but I don’t really think he knew we were there.

Mum is still hanging on. She is lucid when awake, but sleeping a lot. She is barely eating or drinking and is on max painkillers now. Weirdly since dad went she’s been talking about what she is going to do now, as if she has forgotten how ill she is.

I’m ok but in shock I think. Less than 6 weeks ago I’d have said there was nothing wrong with dad other than his age, the decline was shocking and death brutal - only last week the hosp was talking about discharging him! I’ve spent months worrying about mum and yet it’s my dad that’s gone first. Makes no sense.

I'm so sorry for your loss.

May your lovely dad rest in peace and your mum's passing be peaceful

I am sorry for your loss x

I'm so sorry OP

What a heartbreaking time you have had. I am so sorry that you have lost your Dad and that your Mum is so unwell. Thank goodness you were able to be with your Dad and he could see your Mum.

Yes, that’s the only saving grace, but Mum is still so mad that the “hospital stole our final days from us” - she’s fixated on that, and I can see her point. They were treated so poorly. We are hoping to move her to a care home/hospice this weekend. It’s got to be better than where she is.

I'm so sorry for your loss, and I hope your mum gets into somewhere better this weekend

I’m so sorry about your father, LtEve and about everything you’ve gone through as a family.

Hospitals do not deal with dying patients well I feel, particularly elderly people near the end of their days. I wonder if their whole focus is so much on treatment and making people better, that when someone is not going to get better they seem to give up on them completely. The opposite is true of a hospice.

So sorry for your loss x

OP I am so sorry you are going through this and have lost your Dad. I really understand how your Mum feels about time together. I also understand how the poor care is so infuriating.

Please keep taking care of yourself. Especially eating and drinking fluids.

When my parents were both in hospital and dying, I found it challenging to eat, drink, and sleep. My doctor prescribed some ani anxiety meds and looking back I don't know how I would have coped without it. It just took the worst edge off.

I'm so sorry LtEve

Just read the whole thread Op and I’m so sorry you’re going through this. Echoing PPs saying make sure you’re taking care of yourself. Sending so much love