Support for transition from hospital

[Hateam]

My wife has a brain tumour that is giving her symptoms that are pretty much the same as dementia.

She has an op on Tuesday that may give havecsome benefit but not much and any will probably be lost anyway.

After 40 years of fighting, the tumour has won.

It is not malignant but has cysts on it that are growing.

So is currently 100% bebbound. She cannot get out of bed on her own.

I am terrified about discharge. I cannot care for her at home even with 4 carer visits a day. I work full time (I am 54 she is 57) and can not afford to give up work.

I hate that this is the case, but I can only see a possible solution being a state funded care home.

We live in England.

Any help would be greatly appreciated.

I would ask that replies relate to the discharge process. Thank so much for any help you can give. I am desperate, lonely and frightened.

You have asked for practical help and I am hoping you are receiving some real life support to care for you so.....

Firstly if you are not ready or able to have her at home keep saying that you believe the discharge will be unsafe. Ask that this is recorded in her notes. It will help focus attention. Do not waver.

It is not clear how soon after her op the talk is of discharge. Had the discharge process yet been explained to you? Are you saying that there will be 4 visits a day because you have been told so?

Do you know if your wife will be discharged under continuing health care?

Can I ask do you mean that your wife is physically unable to get out of bed or unwilling to because of her cognitive issues? If it's the former then there are multiple issues if this the latter though can I check that you and the discharge planning team have taken into account that in her own environment she may act differently?

There may be able to be a home visit to see how your wife would cope at home on discharge.

Have they discussed part of your wife's op recovery being in an intermediate care facility?

I know about this professionally but also I have lost both to my parents to dementia.

We were able to met my Dad's wish to die at home. We could not do so with my Mum - her dementia and physical health needs became too much for her supported living accomodation and us. When we found the right 24 hour care facility - she did have to move twice - it was joyous. We could spend time with her - I was able to give up work for a while and spent literally most of my time with her. It was - as they say in the US - quality time. I didn't have to bath her all the times do the washing etc. We watched films, I read to her because I went home and could sleep as they did the night times.

Mum didn't always know who we were. She was however always happier for having seen us.

It felt terrible to move her at first but it made the last few months very special.

Thank you for replying.

Lots of helpful comments. I've made a note about asking them to record me saying "not safe" in the notes.

There has been little talk of discharge. She is currently in a London hospital. They have mentioned a move to a more local one once the outcome of the brain surgery on Tuesday has been fully understood.

I mentioned 4 visits a day as that us what my father had at one point.

She is physically unable to get out of bed. She cannot coordinate herself.

I don't know what continuing health care is.

Sorry about your parents. The time with your mum sounds lovely.

There will be a discharge process at the hospital and even though you hear horror stories the Care Act now states that families and unpaid carers must be involved in discharge decisions (where appropriate). Even if your wife is not living with you you still count as her carer (do have POA by the way?).

That said, if the state is funding her care and they (social services) decide it’s safe and appropriate for her to manage at home with 4 carers/day then you are going to have to push back hard to prove it’s not OK. (I assume you/she have no savings?).

Continuing Health Care is a funding thing. Normally Social Care/local authority pay nursing home fees. However, if your wife’s needs were so great that she would need to be in hospital (NHS funding) if she wasn’t in a nursing home then the NHS steps in to pay the nursing home fees. The threshold is very very high and most authorities are very overspend on it so it is hard to get it, and it may not make any/much difference if your wife is in a state funded nursing home anyway.

Make it clear that you will be out at work from 8 until 6 or whenever so she will be alone during those times. Even if you are able to work from home I would suggest not doing this for a bit to establish that you aren't available for care duties during that time.

POA forms were signed just before her massive decline and are with the Public Guardian now.

Savings of about £18000.

I am a teacher and am out of the house for 29 hours a day 195 days a year.

Thank you for your replies.

You have had some great replies here. At this point it does not sound like they are trying to discharge her home anytime soon. Discharging a person with your wife's needs is complex and takes time. This is likely to be one of the reasons they wish to move her to a hospital nearer to your home, to help with the discharge process. Be honest with what you can and cannot do for your wife. Try and attend any meetings regarding your wife's care if you can. Take each day as it comes.

Thank you.

I think discharge is 10 -14 days away.

You need to speak to the discharge to assess team at the hospital - they may have a different name depending on your hospital. Ask for a ‘best interest’ meeting to be held before they discharge. She may well be discharged to a rehabilitation facility - this happened to my MIL, and she eventually passed away without ever returning home.
I concur with the phrase you need to use repeatedly ‘she cannot be safe at home and I am unable to look after her’.

Best interest meeting, got that.

So glad I posted; so much useful advice.

I’m sorry op I have no experience. Is there anyone around, family/friends etc who could help so you can continue to work?

No.

If there was it's a big ask. And I'm sure it would be sustainable. Her condition is likely to deteriorate over time. I think it will be harder to secure the right care after she has been discharged.

...it would not be sustainable...

As well as the discharge to asset team, she should have a a personal, named discharge coordinator - so make sure you have that person's details.

One of the options that may be suggested is intermediate care. This is a few weeks (usually around 4 week, I don't think it can be more than 8) of funded care after discharge from hospital. Depending on the person's needs it can be visiting carers at home or care in a residential home.

Thank you NoBin

Another very helpful post.

Going through this for the first time.

I promise you I know how hard it is to say that you cant manage. It is however often the brave thing to do and in the patient's best interests.

There must be a discharge plan given her level of need.

Everyone must be assured that it is safe, sustainable and in the best interests.

I am assuming your home is not already adapted. Your level of savings would potentially not touch what would be needed for her to be at home. It really depends on need of course but unless they seeming staying in bed all day, every day and her physical needs can be met then a lot of adaptation may be needed.

Moving closer to home is usually the first step. However prior to that she needs obviously to have the op and for you to have a prognosis.

I appreciate her age but Age Concern website has very useful resources as do the Alzheimer's Society (who support all types of dementia. The latter also has an on line community.

You are partially right that it would be harder to get additional support when she is home but this is because it will be questioned why the package isn't right. Hospital at Home services have seen a huge investment in the last year. And forgive me for mentioning the difficult topic but palliative care services are available too if she is place on what is often termed an end of life pathway. This means that it's the pathway - the clear journey - usually and recovery isn't expected. That they are doing the op suggests though that some improvement in quality of life is possible. You will need to decide at each stage of her journey what works for you both & to some extent other family members too.

Please take a friend or family member with you too the discharge planning. If no one is available then you can ask for advocate - often the hospital Chaplin will step in if asked. It's handy as they can take notes and also think things through. You will be outnumbered at the meeting. The other people at the meeting will be under or pressure to make the discharge happen. It isn't in anyone's best interests to stay in hospital. Hopefully though you will some of the true miracle workers who daily make safe and complex discharges happen.

Rest assured though that any care package would be reviewed. It has to be to justify the spend.

Please keep using us as a sounding board if helpful. It is a truly difficult time for you all.

I would try to speak to the occupational therapist on the ward team. Most are brilliant, some aren't. Say how worried you are and make it clear you can't be part of the care package.

A big part of the discharge process will be establishing whether she has 'night needs' in some form. If she does, typically she will need 24 hour care which is most often provided in a nursing home.

Thank you all again.
So helpful.

Just to add intermediate care does differ from area to area. The core offer / idea is that it provides the opportunity for intensive reablement - ie physio / OT etc - that means someone can reach their full recovery potential. Many people can not leave hospital quite as they were before the incident / illness that brought them in. This is an opportunity to relearn skills etc. It also means a fuller assessment can be made and often the patient can be taken home to see what needs to be done.

Unfortunately from your updates it doesn't sound as if it may be an option. Most services aren't geared towards someone who is bed bound permanently.

Each area is different though and most I have work with are excellent and normally I work fly the flag for them but it sounds as if medical needs will be high so ask what the medical / nursing cover is.

Have been down this road, albeit 12 years ago. Just wanted to reiterate the comment up thread about taking someone with you, or using an advocate, for any meetings planning discharge. An overview from someone less involved is very helpful.

I’m so sorry. Such a tough situation to be in. I’m sorry I can’t offer any further advice from a personal standpoint. Could you contact adult social services and see if there’s anything more they could offer? I hope you manage to get something sorted.

As my wife is in hospital, I think the hospital will contact Adult Social Services to arrange a discharge.

I haven't had time to read all the replies so apologies if this has been covered but I speak from experience and was pretty desperate at the time.

My late Father spent three months in hospital eighteen months ago. He had dementia but his hospitalisation was due to pneumonia and sepsis.

He lived in a care home, self funded, prior to his hospitalisation.

When the time comes for discharge, the hospital have a "Discharge Team", from memory it comprises, two hospital staff, a social worker and in our case someone from "Continuing Healthcare".

"Continuing Healthcare" were our life saver.

Basically in a very brief nutshell, they run a score type assessment on the individual. They assess let's say memory, mobility, speech, diet, whether the person falls... more than this but you see the kind of thing I'm getting at and then score 1, 2 or 3.

If you have two or more (I think it's two) 3's you qualify for a further assessment and the process goes on.

It sounds harsh and it's a tough thing to go through but these people saved us.

I was terrified when my Dad was being discharged and my Dads money was running out as care home fees are so high.

The process took about six weeks I think, the NHS fund the first 28 days of care after discharge from hospital. My Dad was quite debilitated by Dementia. Their conclusion was that they would fully fund him. They gave me three care homes to choose from and they placed him in the home of my choice. A wonderful care home, where he died in March this year. Both the care home and Continuing Healthcare have been outstanding.

Continuing Healthcare. Have a research. Good luck.

I found this website very informative.

https://caretobedifferent.co.uk/get-free-nhs-funded-care-upon-discharge-from-hospital/

Sorry I've not posted recently.
My wife has now had the operation and things seem very positive. Mentally she is much better than predicted ( I suspect the surgeon was deliberately pessimistic in order to manage my expectations). This is great as she no longer seems like she has dementia. It is still very early days and things could go backwards. The problem was fluid around the tumor. This has been drained leading to reduced pressure on the brain. As I type the fluid is probably starting to build up again so all progess may be lost. We could be on the same place in 10 years, 10 months or 10 weeks.

Physical she is still very weak and is still bedbound. This may improve.

She will be moved out of the London hospital in the next few days to a local hospital.

The comments made here will help me immensely in the next few weeks and I am so grateful to all those that responded.

I'm glad the operation went well, and I hope she continues to improve.