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.

I faced this situation last year.

Have you got other family nearby? I 'appointed' another family member to deal completely with one relative (dad) whilst I dealt with my mum. It enabled me to eat, drink and look after myself and not worry about him. The other relative normally a bit flaky stepped up to the plate and we liased when we needed to.

Do go to PALS or Healthwatch if you have this locally. Fight for access. The situation at the moment is shocking. I have so many tales of poor care and no access to the relative who is totally unable to speak for the self.

Can you get either of them out of the hospital into a care home, hospice (together?) or at home with care coming into them? In the end the care home allowed us in to see both relatives before they died.

Your local MP?

This situation is inhumane

I am really sorry you are going through this, I can't begin to imagine how hard it is for you dealing with both parents in hospital [ mine are elderly too, and this is a worry of mine ]

Can you make a complaint through PALS or senior management about your parents not being able to see each other? Is your mum able to visit your dad at all, even if in a wheelchair? Staff on the wards will be going with what they have been told to do, so probably can't help, you need to escalate this higher.
I hope you find a solution soon. Sending love xx

It's absolutely an inhumane way to treat people. After this case www.bbc.co.uk/news/uk-england-essex-57681038 I think it's worth fighting for and yes, MP, but it will be hard when you have so many other worries consuming your energy.

It's not "poor me" at all, it's shocking that you are suddenly faced with all this and it is a natural reaction to try to regain a little control and dignity. None of you are being shown that basic thing, compassion. I hope you have the best possible outcome from all this.

There are 3 of us siblings. 2 of us live an hour away and we all work, booking times has been hard but someone has seen him every day. No-one has seen mum since Thu and it took 4 hours of constant calling to get an answer yesterday “comfortable but mostly sleeping” (plus I don’t believe that she is ‘easily roused’ as she is almost completely deaf and doesn’t have her aids in)

We are taking it in turns to see dad, but it’s been pretty awful. It was a bit better once the antibiotics kicked in but sister who went yesterday said he is going back downhill. I’m booked in for tomorrow.

I was seeing mum every weekend, going on to see dad and updating mum, but haven’t seen either for a week now.

House is as good as we can make it but dad would need carers 2-3 times a day. He was initially resistant, but once lucid did admit he needed help and seemed to understand. I don’t know what he’ll be like now.

I'd recommend ringing PALS now. They don't just deal with complaints and can broker in situations like this. Due to covid some hospitals have designated patient communication workers who have iPads etc to support with virtual visits. I know when we have spouses in the same hospital, particularly with terminal patients, we move heaven and earth to get them together. It is more complex with covid, and I can only speak from my experience, but I would have thought they could enable something.

Oh god, how awful. Is there any chance of getting your mum into a hospice so that at least you can visit her more? Or, both into a nursing home, your mum for palliative care and your dad for nursing care - then they could be together. Hard to organise I know, but its possible there would be space

Ring PALS. PALS scan help you complain but that is not their role they are there to help you talk to the hospital.

For your Dad ask about physio. They will both need an assessment before going home to ensure suitable care is in place. Tell the hospital that you will not collect them and bring them home until suitable care is in place.

Why was the ward closed for all visitors? Covid I suspect. They then cannot allow anyone in - even your dad, as heartbreaking as that is. But can they facilitate a FaceTime call?
So sorry for what you are going through. On Monday please phone and ask for the nurse in charge or the ward manager. After midday would be a better time to phone. And make sure that between the 3 of you siblings that only one is calling/the point of contact.

I’m sitting her with my mum, just wanted you to know, a complete stranger’s thoughts are with you. I’m so so sorry that’s happening.

Take care

That is really tough. I would recommend asking if there is any carer support in the hospital as well. They were really helpful in sorting stuff with the ward and being a listening ear that wasn't going to get upset like my family would.

Gah, lost a long post. Bloody technology against me as well!

Yes ward closed ‘because Covid’ but apparently no cases on either parents ward.

I’ll definitely get sister to ask today about Communication workers and iPads etc. Great idea, thank you.

Dad has been referred for physio and has spoken to one (the person he admitted he needed help to), not sure how much physio he’s had but can ask tomorrow.

Sister in same town is main contact for hosp. She is going most of the day to day stuff but obvs has her own things to deal with too.

PALS seems to be the initial job for me then. Thank you - I thought they were only about complaints, but happier to hear they can help ‘at the time’ as well.

I don’t know about hospice, care home. They have always been really against this, very vocally so, but may change their minds now (tbh I’m thinking the worst, that it’s probably too late).

I’m going to message a lot of this to my sisters, so thank you all.

This sort of story really angers me. Elderly people are treated so badly in so many hospitals, it really does need large scale investigation and change.

Our family faced something similar last November when my 87 year old grandmother was admitted into hospital with a suspected blocked gall bladder. She was initially prepped for an operation so was made nil by mouth and we were told without the operation she’d last 3 days. No family was allowed in to see her. 3 days later she still hadn’t had the operation and was still nil by mouth! Her mental and physical health had deteriorated greatly and information from the ward was sketchy and difficult to obtain. My DF demanded that he be allowed to come in and collect her because she was now at end of life and frightened and at least at home she could be surrounded by her family. The hospital agreed and my DF was very distressed at her condition when he brought her home. He and my aunt took great care of her at home and after a few days of hot soup, she made a remarkable recovery and is still with us to this day!! If my DF has not gone and got her, I am certain she would have died.

Good luck to you and keep fighting for your parents. Covid has made these kind of situations even more inhumane.

How old are they, OP?

Mum is 90, dad 93. They’ve been married 68 years and this is the longest they’ve ever been apart.

This makes me so angry and sad. I will never ever get the time back with my sister and mum who both died during the pandemic. I was not allowed to visit either of them for months. Both would not have been able to understand why.

The hospital released a person with covid into the care home at the point we were not allowed in. Wtf were they thinking?

This inhumane treatment (causing complex bereavement) and the cessation of healthcare services is going to be a long covid consequence in both mental and physical health for many many people

My 94 year old FIL died in hospital earlier this year. Visitors weren't routinely allowed but his children were allowed in to see him (together) before he died. The nurse rang up and just said 'it's time' and my DH spent several hours with him. The family were all relatively local so were able to get there in time. Hopefully, the hospital will allow the same for your family and your Mum. My sympathies to you and your Dad.

One step at a time, OP. Just keep concentrating on what you can do; they can't do worse than say No, so keep asking about greater access to see them. x

Oh god how awful for you all.
My dad was diagnosed with cancer a few weeks ago too, when he was in hospital we were able to go in, he was in a side ward so I think that helped. I did notice signs in the hospital about virtual visiting so maybe your hospital offers the same?
My Dad was discharged a couple of weeks ago after his diagnosis and we've heard nothing since. He's incredibly poorly.
I hope you can get something sorted so your mum and dad can see each other, its a scandalous situation.

Awful visit with dad today, so bad I couldn’t stay the full hour, utterly devastating. Nurses were a waste of time, couldn’t answer any questions, no idea when doc coming in and the senior nurse was too busy to talk to me. I mentioned PALS & communication workers and got a blank look. He needed the loo when I was there and they just put a bottle on his bed and walked away - he’s supposed to be walking as much as possible, they were talking about discharging him next week! He couldn’t even do that for himself and no-one tried to help him.

Once I’d settled myself I tried to put a call in to PALS and got an answer phone, so I don’t think they work the weekends. I am going to try again tomorrow.

Still unable to see mum and only get soothing “she’s doing well” words from her nurses (which could of course be true, but it’s hard to believe when I see the state my dad is in)

I don’t think either of them will recover from this. A month ago my mum was asking for a takeaway from right across town and laughing at me getting stuck in the queue from hell, and my dad was teasing my DD about her not making him enough cakes to last the week. Now mum is barely conscious and dad had no idea who I am. I can’t believe it’s come to this and in such a short time.

I am so very sorry you are going through this OP. It's not right.

Sorry LtEve it sounds awful, I cant believe they won't let you see your mum
My Dad was the same he was fit and healthy until mid way through May then he just stopped eating, he has cancer pretty much everywhere. The quickness of it is devastating. Dad had good care in hospital, but we've had nothing since was discharged
a few weekss ago.
I hope you can get through to PALS tomorrow.

So sorry, I hope your parents can say goodbye to each other soon

I'm so sorry to hear you are going through this.

I just wanted to add that you should definitely contact PALs and outline all your concerns, and what you wish to happen. I also found Age UK invaluable with advice regarding poor care and attempted discharge of my elderly Grandmother. They helped me phrase questioned and gave clarity to my muddled thinking. We thankfully had lasting power of attorney for health and welfare which helped.

It's such a shocking situation to find yourself in. Hoping you can get your parents the care they deserve, and the much needed family contact. I'd also call your MP's constituency office and let them know of the situation, and hopefully seek help and advice.

Thinking of you, wishing you all the best.

God how I feel for you OP, it’s a horrendous situation.
I lost both my parents (96 & 93) within 3 months of each other, either side of Christmas. I wasn’t allowed to visit until the very end, neither was conscious and I was allowed 10 minutes. Probably the worst experience of my life.
I was not allowed to visit at all during the preceding 6 months they were in hospital/care homes, completely barbaric.

Sorry, I also meant to add, it might be worth asking if continuing health care is applicable for your mum if she needs palliative care? Not sure how it works in Covid times, but we managed to access it for my Grandmother after lots of complaining and finally getting to talk to a consultant who had my Grandmothers best interests at heart. Time was really against us, but it permitted us to get her the care she needed and hospice support.

Good luck.