My husband has stage 4 cancer and has just had surgery resulting in 2 stomas. The first surgery wasn’t a complete success and he had to have a second operation and of course is very frail now. He’s been in hospital for the past 11 weeks but they’re now talking about getting him home (he really wants to go home now) and whilst I really want him home it scares me as I feel like I’m about to become a 24/7carer
and my life is about to be turned upside down (at least while he was in hospital i could escape home and of course the ‘nursing’ aspect wasn’t my responsibility) in addition to running the family business. I know he will need a lot of support, both medical and practical which I will talk to the hospital about this week. Do any of you have any tips that might help me navigate this new life? Also, can anyone recommend an easy (and cheap) way that he can summon my help if I’m not in the same room (some sort of buzzer I guess. The ones on amazon are either expensive or get mixed reviews)
He’s a shadow of the man I married but occasionally that man surfaces with a smile that melts my heart. I’m hoping that once he’s home he’ll want to eat a bit more and will regain some weight and some strength.
Sorry if it seems like I’m whinging; I guess I just needed to say it.
Hi Tess … welcome to the forum.
Extremely quiet on here as I type … a holding reply pending others extending their welcomes and advice.
Two things leap out from your posting.
Hospital discharge ?
The BIBLE :
Being discharged from hospital - NHS
In short , by the book or … NO DISCHARGE.
CHC / NHS Continuing Healthcare.
Mentioned / offered / applied for / refused ?
Main thread … colour coded to help find whatever information is needed :
Could well prove to be the answer … if you are successful in getting it !
In the news yet again today :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-rationed-high-time-to-ask-some-obvious-questions-33311
Hopefully , it won’t be too long before others arrive.
Hello
Welcome to the forum! Really sorry to hear about your husband. Take a really good look at the links Chris has sent. You REALLY shouldn’t turn into a 24/7 carer, one person can’t do it all. There should be help and a care package in place for when he comes home. If his needs are high, this should be funded through the CHC system (Continuing Health Care). Does he have a Macmillan nurse? They can be a real wealth of help, support and information.
Good advice from Chris and Sally above.
As for a ‘buzzer’; a lot of us have found a wireless doorbell (battery operated) to be very useful; they come in two parts - the bell push (which would normally be attached to the front door and which your husband would keep nearby) and the ‘ringer’ (most are free standing and therefore mobile and you would keep that part with you). Basic ones start at about £10.
I got my last one from Argos - https://www.argos.co.uk/product/8471710
They’re also available via Amazon and I’ve also seen them in my local supermarkets.
Do you have help for the practical things cleaning shopping etc. Help here can be a god send!
Register as a carer with you local carers groups. The are minds of information within these association/s/group/s.
There maybe a carer in a simpler position near to you. Who could offer advice assistance etc.
In the first instance take all the help offered. You can always eliminated at a later date.Things that don’t suit of work.
Seconding the recommendation for a doorbell to call for help.
On advice from other forum members, when I talked to the hospital pre-discharge I took a notebook and wrote down everything they said and who said it. (I explained this to them by saying I knew I wouldn’t remember it all afterwards!.)
My suggestions - they might not all apply to you: Ask what equipment he will need and when it will arrive. Ask what care he will need (as you say, medical and practical) and who will provide it. Ask about his medication and how much they will send him home with and if the GP will provide repeat prescriptions. Ask if your husband needs supervision to take it.
My husband was entitled to 6 weeks free rehabilitation but when it ended they wanted me to find carers - they sent me a list about 8 pages long and expected me to work me way through it. I had to be very clear that although in his case he was self-funding I did not have the time to organise carers as I was too busy doing everything for him that the carers did not do. I then found that there was a social worker who could arrange it. We accepted the four calls a day that were suggested and then cut back when we realised that one of them was wasted as they always arrived when he was asleep.
Take all the help you can get for yourself. In my case, I paid for a cleaner and ironing service and accepted the offer of a lovely neighbour to come in sometimes so I could just go out for a walk.
With every good wish for this homecoming.
Do NOT let him home until you have a rock solid care plan in place for him.
I can’t see how you can care for him and run the business, unless you have a LOT of care at home. He might WANT to come home but is he really going to cope at all? If you get a door bell, you might regret it!
After a hospital stay one should be entitled to 6 weeks reablement, which is free, and usually organised by the hospital or your Community Matron or Social worker. I hope things go more easily for you.
I have now seen various people at the hospital and they’re telling me that they are arranging a full care package (live in carer plus an additional person for 4 visits a day) and all paid for. They delivered his hospital bed today too so I’m feeling a bit more positive about how we will cope with him being at home. It’s nice to hear from other people in similar situations and how you are all dealing with this stuff so thanks everyone for all the advice and support.
The bed should have been delivered BEFORE discharge though.
Please be sure to start a notebook/diary. Write down who you speak to, their number, their role, and what was agreed. If they don’t tell you, or you don’t know who they are or what they do, be sure to ask. “Sorry, I’m not sure whether we’ve met”…or similar.
Always remember that these people are all public SERVANTS paid by all of us to do a job for us. Some make out that we should be grateful for any crumb thrown in our direction.
Keep in touch, it’s good you are feeling more positive.
Tess, that sounds good, thank you for letting us know. I’m sure if you have more questions, someone here will have answers.