Preparing for homecoming after rehabilitation

Tell us a bit about yourself here.
First post, although I joined a long while ago.

My husband has a brain tumour and has had a debulking operation, radiotherapy and chemotherapy. I have been caring for him (he has a speech loss, some cognitive problems and difficulty reading/writing) but he has been able to move around the house and has not needed personal care. Now he has had a stroke and all that has changed; although he is improving he has been paralysed down one side. We have a meeting arranged with the OT and a Social Worker to discuss what happens when he comes home. The working assumption is that he will have a few weeks transitional hospital to home care. I am also waiting for a visit to assess our home to see what will be needed.

Does anyone have any experiences to relate or advice about handling the pre-discharge process? I need to get the message across that he needs reliable support when I am not here (I have failed dismally to get a respite sitting service in the past). He will also have to have a financial assessment (read: I will have to prepare for this on his behalf). I have POA and have read the Assessment factsheet and the FAQ about paying for care, but it would be good to hear other how people got on.

I am trying to use the time he is in hospital to rest and get out to see friends, but I seem to spend most of it visiting, taking his clothes home to wash and organising paperwork!
Hi Christine,
Welcome to the forum, I hope you find it welcoming and supportive.

I don't have personal experience of this, but others who have, will be along.

In the meantime, there is advice here on the main website ... f-hospital

Hi Christine,
My late mum was in and out of hospital many times towards the end of her life, I had many difficult experiences.
Do NOT agree to discharge until he has had an NHS Continuing Healthcare Checklist Assessment, until all the aids and adaptations are in place at home, and you know when carers will be coming to help you. He should be entitled to 6 weeks FREE reablement care.
Do NOT be fobbed off by statements like "they will all be delivered tomorrow..." because it's very unlikely.
Do NOT agree to a Friday discharge as then if there is a problem no one in Social Services will be around to help.
I had a running battle with mum's last hospital, but I knew my mum better than anyone, and with many years experience I could fight mum's corner for her.
This would be a vey good time to start a diary/notebook. Be sure to record the date, name, and phone number of everyone you speak to, ask for their email address, and write down what the conversation was about, and what was agreed.
Come back here as often as you need. Please don't fall into the trap of saying you will do everything your husband needs, make sure you have someone else involved so your husband can be looked after when you leave the house.
Also make sure he is provided with a Lifeline pendant and phone, if he doesn't have one already, as this will give you some peace of mind.
Melly1 thank you for the link; I had not seen that page.

Bowlingbun, I am going to read your reply again several times before the meeting and am practising my best broken record assertiveness technique. I feel better just knowing what some of the pitfalls might be as forewarned really is forearmed; thank you.

Good news my end is that I asked for some counselling some time back (our local cancer support centre offers sessions to carers) and I have an initial session booked. I now have an extra incentive to be sure I get some hours respite sitting service.

Thank you again.
Before any meeting write your OWN agenda, you could even type it up and pass it round. It not only gives you the element of surprise (I think I was the first ever to do this at the hospital mum was last at) but you can say that these are the questions you would like answered FIRST.
One thing I have often found is that the time allowed for meetings is apparently calculated on what they want to say to you, with little or no time for what you want to say. This is why it's really important to get your points done first. Otherwise people you want to question will say "I have to go now..."!
Take a notebook and make notes.
Did you know you can ask Social Services for an advocate for both your husband, and yourself? I'd suggest you asked for one asap, if they can't find one in time, then take a friend if possible, to act as witness, and ask the friend to make notes.
I'd include in your agenda the amount of notice given to you before discharge, so you can be properly prepared. So often they seem to assume that fridges and freezers fill automatically!!!
Try really hard not to do so much in preparation that you are exhausted totally before he comes home because inevitably, the "shakedown" period will involve many challenges.
Make sure you know EXACTLY who is in charge of the carers arranged before discharge, phone number during the day and out of hours, and exactly when they are due to visit. Also find out how to contact the district nurse if needed.
Just to say again, thank you for the help. I now have pages of notes, names and 'phone numbers.

There is also a discharge plan taking shape. If it works, DH should be brought back for a supervised visit after the first batch of equipment has arrived, to check how much he can do and to identify anything else he needs (not a visit with a view to leaving him at home). The team on the ward have taken on board my concerns about managing in between carer visits and have set targets for what DH should be able to do before he is discharged.

Being prepared means I am feeling much more confident and everyone has taken my questions seriously. (Better still, in the planning meeting everyone spoke to DH, not to me over his head.)

I need to get the Reablement confirmed (it is agreed he needs it and it will be requested when a discharge date is agreed, but the Social Worker said there is not enough to go round!) but I am a stronger, more clued-up carer this week. Who knows what I'll be like once he is home and we are reliant on carers coming in, but that's a battle for another day.
Crispy, it sounds like the homecoming arrangements are taking shape. I'm glad you are feeling empowered. Keep us updated, we are here in cyber space if you need us.

Because of the situation with the brain tumour, I'm wondering whether your local hospice organisation would provide anything like a sitting service for your husband? Or perhaps Marie Curie?

I know it's a dreadful thing to think of (is there any word more likely to instill instant terror into us than 'hospice'?) (I can remember, years ago, when we first moved to the town we are in, a street collection by our local hospice charity, and I can still remember saying to the lady with the tin "This is the charity we all give to in the hope we shall NEVER need its services'.....little did I know that one dreadful day I would, for my own husband.....)

But hospice charities do more than just 'arrive at the end' and that's why I suggest that getting in touch with them, even if they are the last lot you want to think about right now, (or ever), could be of practical use to you.

The other 'helpful' thing about hospices is that they all, obviously, know the fear and stress you are going through now, and most of the volunteers there, as well as the staff, have been through their own crises in that respect, and so have a sympathy and understanding - and a willingness to address the isues which many of those NOT living in 'Cancerworld', as I call it, are too scared or ignorant of talking about. Whatever else about Cancerworld, we are all 'in it together'.....

Wishing your husband a good discharage, and as good a quality of life now as can be managed all round - kindest wishes, Jenny.
Make it VERY clear that he cannot come home unless four visits a day can be guaranteed, to be reduced when YOU say you can manage with less. Be very alarmed by the social worker saying there aren't enough reablement carers to go round!
Has he had his NHS Continuing Healthcare Assessement yet?
Well, DH is home. I had problems logging in, so could not thank you for all the support until now.

The equipment did arrive before DH and he was brought home for a short visit in advance to make sure we really could manage. The reablement team is still coming in four times a day and rehabilitation therapists come in five days a week. I think we are fortunate in this neck of the woods (but it is exhausting having all that going on as well as being chief cook and bottle-washer). Oh - thank you for the mention of the pendant alarm. He now has one and i am trying to leave him while I walk round the block every day.

In answer to a couple of specific questions:
Despite his multiple conditions, even to my mind DH does not meet the conditions for CHC but I have read up on it in case the tumour regrows. Our local cancer support centre (which is not part of the hospice) has helped with suggestions for a respite sitting service, it’s just that it depends on availability so we are going to need (and will be happy to pay for) something more reliable to cover my own occasional hospital appointments.

I hope to join in more around the forum now I’ve got back in.