As if having husband dying of cancer wasn’t bad enough, today I arrived at his ward at usual time (just before lunch) and since late afternoon yesterday, a sign on the door told me about the changes to visiting hours: one hour - 6-7pm. And that’s after an hour’s drive. He has been there for 4 weeks, is on DNR list and they are allegedly trying to get him into a nursing home. After a serious argument with a senior nurse, I was allowed in - but there was NO way that would work tomorrow. It appears new NHS ‘rules’ allows nothing for next of kin who cannot drive (with any hope of safety) at night. Is this happening everywhere? My husband is at Worcestershire Royal - and they had already finished off ANY confidence I had left.
Hello Janetg,
Welcome to the community. We’re sorry to hear about all that you and your husband are going through. Supporting a loved one who has a terminal illness can be an emotional and stressful time and we are aware that the impact of the coronavirus is heightening this for many sadly.
You mention that you are unable to drive at night, if this is due to a medical condition you may wish to speak to the ward manager to see if the hospital is able to make any allowances for this. If you feel uncomfortable in speaking to them directly there would also be the option of discussing your situation with the hospital’s PAL’s (Patient Advice and Liaison Service) team. PAL’s are there to offer confidential advice, support, information and part of their role is to help resolve concern’s someone has when they are using the NHS. There is information about the Worcestershire Royal Hospital’s PAL’s here - https://www.worcsacute.nhs.uk/contact-us/feedback/complaints
Our Support Line offers a safe space to talk if you feel you would like to speak with someone. You can reach us on Freephone 0800 090 2309, or by continuing to chat on this community. We also have an information on our website regarding coronavirus, https://www.mariecurie.org.uk/help/support/coronavirus Hopefully others here on the community will also share their experiences with you.
Take care,
Clare – Support Line Team
Thank you Clare
Of course, I’m in the kind of state that makes talking (to strangers OR to friends) near impossible - typing IS a bit easier. I tried to explain my difficulties to a senior staff member - got NO help at all - everyone is in the same position - tough luck - seemed to be the message. The situation got even worse this morning when I had a visit to my home by 3 ambulance crew - the same who had taken him to hospital 4 weeks ago. And they came to ‘investigate’ (goodness knows how) a complaint made to ward management about something that was overheard in one of his leat lucid states. I had been asked about it by a senior nurse several days ago and thought I might have made her see sense - but it seems she couldn’t combine the side effects of chemotherapy with anaemia AND severe depression and come up with the nonsense the ambulance crew were meant to be doing a ‘follow-up’ on. I spent 30 minutes explaining it to them (in words of no more than 2 syllables) and gave the one who claimed to have IT knowledge full access to my husband’s computer. He declined the same access to mine.
The personal humiliation and distress caused by this has given me something else to try complaining about - a complete breach of patient confidentiality. Ay least I got a call from someone working on finding a nursing home that can help - chances of success - anyone’s guess.
Hi Janetg,
I’m sorry to hear that you are feeling that things have been even worse today and I hope this morning’s issue will be resolved soon. Hopefully the call you had about finding a nursing home for your husband will mean that this is moving forward, although I can appreciate why you may be finding it hard to feel positive about the chances of this at this time.
As writing is a bit easier for you please keep sharing your thoughts and feelings here on the community if you find it helpful.
Best wishes,
Clare – Support Line Team
Hi Clare
I’m not sure I do. Everything I try backfires big time. I set out to try to drive to Worcester - nearly hit a muntjac on a B road - then got onto the dual carriageway and gave up before causing an RTA which would have been inevitable once I got to the traffic repairs part of a big roundabout, lol. So got home alive - tried to reboot my 'puter and had a mega-crash. Thankfully, am now back online - at least I might be able to get a complaint in to the right place about the appalling breach of patient confidentiality (I AM a retired campaigner so it MIGHT give me back the will to keep trying.) Now I must try to ring the ward and get someone to explain to him - and find ou if they think he’s eaten enough to keep a mouse alive.
Janetg.
Hi Janetg,
Your car journey yesterday sounds as though it was really stressful and then to have computer issues when you got back was the last thing you needed. Being a retired campaigner, I’m guessing makes you a determined and resourceful person, I hope these strengths will help you through this time.
Take care,
Clare
lol, Clare - and my resources were sorely tested again today. Some of it trivial: including beating up Royal Mail AND TV licensing over a silly address cock-up; chasing my various disputes with the hospital; talking to all sorts of people and getting a teensy bit of sense from 1 or 2 of them (and garbage from the rest.) Topped off by delivery of the wrong chainsaw; and then when Fed Ex turned up to pick it up, it’s bar codes weren’t right so I am tripping over it. And THEN searching for jump leads for a member of staff’s car, failing: the only good thing I ound while looking for jumper leads was a store of vintage wine and port - some worth £50 a bottle, lol. That WAS a find! Everyone has their own lot of headaches and worries - even a member of my staff who has an autistic lad in his final year of school. They’ve closed - he’s lost all the end of year pleasures, and she can’t get anywhere else to take him. It seems that every time we clear a hurdle another looms up to put us in peril. At least I’ve managed to book a taxi to take me to Worcester and bring me back - even managed to beat them down from 1st quote (£135) to a slightly moe rational £85.00!! I’m very lucky that money isn’t a problem - but if I could buy some luck, I’d spend a year’s income on it happily. Thank you for letting me vent - I’ve now moved up a gear!
Janetg
Hi Janetg,
Even those things we would normally think of as trivial and easily sorted out can feel overwhelming at a time like this. This community is a safe space for you to talk and vent about how you are feeling. It sounds as though work has been busy for you as well.
I’m sorry to hear about your staff member’s son, missing out on the fun activities that would have been planned for the end of his final year. The current changes are a lot for children to take in.
Well done on beating down the 1st taxi quote you got. I hope that without the worry of driving in the dark you were able to enjoy spending some time with your husband.
Take care,
Clare
I dared hope that it couldn’t get any worse. BIG mistake. I bought some screening glasses and was confident on the way to hospital (at 4pm so just bright sunlight.) After a devastating hour with him, off I went, and glasses were a flop. Missed a vital turn and took nearly 3 hours to get home after spending an hour driving around a DEAD Ludlow looking for a sign (thankfully, 2 young people who’d been to the chippy.) My dogs were beserk when I got home - I was 2 hours LATE with dinner.
Once they had been fed ad cuddled (and Benny, still bereft from absence of his ‘dad’ - wouldn’t eat) looked again at the book sitting my computer for 2 weeks: Taming the Four Horseman (described as 'Radical Solutions to defeat Pandemics, War, Famine and the Death of the planet.) I cannot pick it up on top of news that Robin Hanbury-Tenison, was in hospital on a ventilator. And yes, coronavirus! Robin was definitely the TOP explorer of the 20th century. He was also the best ‘boss’ I ever had and quickly also became my best friend. Robin will fight until his last breath - even at 83, he is the fittest a man could be. He got the virus while skiing the French Alps until Friday. He has always been a fighter - I pray he CAN beat this war.
Hi Janetg,
I’m sorry to hear that your best friend has been affected by coronavirus and is currently so unwell. It’s understandable that you don’t want to pick up and read a book that discusses pandemics with all that you are currently coping with. Sometimes the books we read need to be a welcome respite from what is happening in our lives. Your journey home from the hospital sounds like it was very stressful, thank goodness for those two people who were on their back from the chippy.
You mention that your visit to the hospital was devastating, how are things for your husband at the moment?
Clare
Thanks Clare
He’s not at all good - not sure if he has pain as he flinches. Thankfully, I’ve had a bit of progress today with nursing home. The one I wanted is suffering staff problems and not taking anyone in. But the Worcester one (at least I KNOW the way now) WILL take him once the final hurdles are cleared. As ‘Jimmy’ there has been the most help so far, it could be far worse. And at least I’ve soted a few problems today (including clipping terriers’ feet, treating the cuts made to their pads - and managed to avoid having my arms shred to bits as they fought!!) The success I’ve had today definitely been down to my no. 1 right hand - and telling myself AGAIN to stay calm and safe. And - as best as I can find out - my best fried is still on the ventilator and I HOPE that means he is still fighting!!
regards - and thank you for helping me vent!
janetg
Hi Janetg,
It’s positive to read that you’ve made some progress with the nursing homes, and that you’ve found your way to the one in Worcester. It sounds as though you have been very busy and productive in sorting a few problems out, including your terriers even if they didn’t really want you to!
If you ever want to talk to someone about the symptoms your husband may be experiencing, we have nurses on our Support Line, who can provide clinical information and support and you can read more about them here - https://www.mariecurie.org.uk/help/support/marie-curie-sppport-line
You’re welcome to use our community as often as you like, it’s exactly what it’s here for, take care,
Clare
Not much point in catching this up but: we got him transferred to a nursing home. Ruddy ridiculous that our property is bang smack on the Worcs/Shrops boundary. We were in Worcs for hosptals - but in Shrops for Nursing homes. Thankfully he was moved to a very good nursinghome (not that I saw much of it - it was on total lockdown from the start.)
5 days later I got that phone call - and rushed to be there: I was 5 minutes too late. Then all the faff about funerals - seems you can’t get a death cetificate over Easter week-end - and we needed that to get him to local funeral directors - does it really matter, as when the funeral can be arranged, it will be limited to 10 mourners. Friends have been on the phone and by e-mail - not a good tie for hotmail to block my e-mails, or his computer to die too: along with two scanners! But I guess I’ll muddle through!
I’m really sorry to hear about the recent death of your husband Janetg.
Other families are telling us that all the changes to arranging and holding a funeral caused by coronavirus are making this time feel harder than it already would be sadly, please don’t hesitate to continue to talk on here as and when you need to.
I’d also just like to make you aware of our telephone bereavement support service which can offer you a confidential space to discuss your feelings and emotions. If you wish to you can read more about this here - https://www.mariecurie.org.uk/help/support/telephone-bereavement-support
You could certainly have done without the IT problems you’ve had when friends have been trying to contact and offer their support. I hope these issues have been rectified now.
Take care
Clare