How to access care for elderly dad who lives alone and diagnosed with cancer

[Totallybannanas]

He is currently in hospital due to not being able to eat or drink during to stage 4 oesophageal cancer diagnosis. He is having a stent fitted and then will be allowed home. I am worried sick, at the moment he is mobile and fairly independent, but he looks fragile after his hospital stay and seems to be deteriorating because he can't eat. The stent will hopefully help with this. I'm worried about him coming home, as he is very anxious due to regurgitating and worried about choking especially at night. I am worried about him eating the right things, managing any pain. At the minute, we only have a telephone number for oncology and cancer nurse. I have taken time off work to visit and provide emotional support, as he is afraid of being alone but I can't be with him 24 hours a day. I plan on staying a few nights in an air bed to see how he goes, but ringing anyone for help out of hours is a nightmare. He is social housing and has less then 10k in the bank.

Hi @Totallybannanas this must be really tough on both of you at the moment, it’s a particularly challenging situation for any child of an elderly parent - and it is not your role to look after him 24/7, even though it may feel that way.
I believe that your council’s Adult Social Care should be your first port of call, especially so given your DDad’s financial situation.
Please phone them this afternoon & ask for urgent help.

If he is currently in hospital the social worker should be in touch with you when setting up a care package for his discharge. I'm going through similar at the moment albeit a bit ahead. After discussing what the best options were our social worker gave me a list of homes that had available respite beds and we took it from there. Mum had six weeks respite and after another review and got a permanent place last week.

Best of luck I know how physically and mentally draining it is

Make it very clear to the hospital staff that you cannot be there all the time. Needs referral to Adult Care and District Nurses as minimum. Would someone have a discussion with him to see if he’d like to be discharged to residential care to have company/ supervision 24/7?

Do you live near him?

He may need specialist equipment at home (a hospital bed so he can lay comfortably without risk of choking for example) - I think A S C may be able to help with that.
If he is still in hospital, and you believe it is not safe for him to be discharged, then you may be able to advocate for him to stay there until his home is safe for him to live in.
MacMillan may also be a source of advice, either on their website or by phone.

I wish you the best of luck going forward & hope that your DDad gets all the support that he deserves xx

(I’ll admit to being way out of my depth here; I simply couldn’t read & not respond, not least just for a bump for you.)

Yes - hospital staff (in my experience) are very good at assuming that a female relative will provide 24 hr care.

In my area, when a patient is over the age of 70, the hospital and social work are supposed to liaise in order to provide an interim care package. I only found this out after my then 71 yr old husband was discharged from hospital with no warning after a problematic* triple bypass. (I was working full-time and also providing care and support for my parents.)

This is going to sound cold, OP, but be prepared to play hard ball with hospital staff if need be.

ETA Had to have a second op to have the sternum re-wired and needed two blood transfusions following perforated stomach lining caused by nursing error.

Thank you, the difficulty I'm finding is the nurses are constantly changing so hard to pin point one nurse responsible for his care. The one on shift today is especially hard to talk to 😕

He's never been in hospital before and is normally fit and healthy.

Here's a useful guide from Age UK on what should happen when a person is discharged from hospital Leaving Hospital

Bloody hell: "there's no longer a requirement to carry out a care needs assessment before you leave the hospital."

Are they trying to get out of intermediate care/re-ablement?

Given what the OP has said, I should hope that her father is entitled to intermediate care.

It’s discharge to assess. They should be discharged to some kind of reablement placement or care home where their needs can then be assessed and plans made.

I don't think it's a nurse that you need to be speaking to - they will change and there won;t be one with overall responsibility for his care all the time. There should be a separate team in the hospital dealing with what will happen to safely discharge but I can't remember what it's called.

Agree with being very clear and firm with anyone and everyone you speak to about what you will and will not be doing. No matter how hard or heartless that feels. This is the best way to get professional support for discharge.
In the area DM lives in there is a Home Assessment Team - health and social care: physio, occupational therapy, carers who assess and support on discharge. OTs saw DM in hospital and afterwards, absolute godsend.

Quite the opposite. Many areas now operate a discharge to assess (D2A) model to prevent people sitting in acute beds on hospital wards waiting for an adult social care assessment.

Instead the NHS funds an interim care package either at home (reablement or a standard domiciliary package) or in a residential or nursing home and social services catch up with them wherever they have been discharged to within 4 weeks to complete the assessments for long term care planning.

The advice to 'refuse discharge until they have seen the hospital social worker' is out of date in many areas so it's always worth checking if you are in a D2A area before asking for a hospital social worker that may no longer exist.

Thank you for this.

If he is for palliative care then he may be referred to the community palliative care team so they can monitor symptoms.
Contact adult social care for a needs assessment.
If he does not already receive a disability benefit then apply for Attendance Allowance ( assuming he is over state pension age ), he may be able to get it fast tracked depending on prognosis. Speak to his cancer nurse specialist regarding this. It can help him to pay for whatever he needs- carer, cleaned, gardener, aids etc.
Make sure things like power of attorney are sorted.
Age Uk have a huge range of factsheets on virtually every topic.

I spoke with his cancer nurse today, and the general response was that, because he's still mobile and relatively independent, he's not currently eligible for much support. Since he’s not considered to be in the very late stages, there doesn’t seem to be anything available at this point.

After this past week of him not eating or drinking, I was really worried that things were declining quickly. However, today he’s improved a bit since having the stent put in—though as we know, things can change fast.

I was hoping we could apply for something like Attendance Allowance, so that he could get a bit of paid help at home—someone to assist with cleaning, shopping, or meals when I’m not there, or even just to check in on him. It seems like there’s very little support for people in this ‘in-between’ stage. It’s honestly hard to believe that someone who’s nearly 80, has terminal cancer, and lives alone isn’t entitled to any help.

If he is stage 4, terminal and has less than 12 months as his prognosis he is eligible to claim AA immediately, under the Special Rules (SR1). My FIL doesn’t have long left and his claim was assessed, approved and payments began within 3 weeks. If he hasn’t been given less than 12 months he will probably still be eligible but not under the special rules and they will start paying it in 6 months time. The MacMillan nurse completed my FILs form for him.

Has he seen a dietitian? There is usually a specialist oncology dietitian. Try ringing the ward and seeing if you can make contact with them. They might suggest he sees a speech and language therapist as well, though problems at the oesophagal level can be a bit of a grey area for SLT.

I really feel fir you both. I wonder if he would consider Wiltshire Farm Foods delivery - the dietitian should have brochures and they are very good over the phone. There are other firms who deliver ready meals as well. Is there a Good Neighbour scheme locally, or ring Age UK for advice too?

We haven't had a SR1 form, this was mentioned by Macmillan. His consultant said it was hard to predict. And my dad didn't want to know the time frame anyway. The nurse said we could discuss if he was entitled to financial support at the next meeting with his consultant, but it would also depend on treatment etc but when I've googled his cancer not many survive longer then 12 months.

Definitely get him referred to the district nursing team, they can keep him on the books for palliative reviews as needed.

I would just start an application for Attendance Allowance under normal rules if he has had difficulties for six months. then if you can get an SR1 form you can send that in to speed things up. I help people with AA forms as part of my job and have previously worked as a macmillan benefits advisor and whilst others may not agree, I think they award AA very easily especially with a cancer diagnosis.

What does your Dad want? Does he want to go home with carers coming to see him or would he prefer to go into a care/nursing home?

He wants to go home, to be honest he needs a wife. Someone to help do the shopping cleaning, meal preps making sure he eats the right things and remembers to take his meds! He has a piper alarm, which he pays for but that's it.