Dad terminally ill, lives alone anxious wants to go into a home

[Totallybannanas]

I have never posted so much on here, but dad is terminally ill with cancer, and living alone. I have stayed the last 3 nights following a discharge from hospital. Due to anti social neighbour blasting his music until 5 am morning I can't sleep and caring for dad, I am absolutely exhausted being there 24/7. He is so fearful of being alone, I've hardly been home. I'm crying all time when I'm on my own because I am so tired. We have a carer come in (2nd day now) but they don't cook the meals he needs. He has to have soft/pureed diet which dad also hates. I'm trying to cook home cooked foods but need time at home to cook and batch and shop. Basically when I'm not there, he isn't coping even with a carer. What are my options? He is 80 this month and always been independent, but following a cancer diagnosis he has had aged and caught up with his years.

Just to add he is in social housing and doesn't have more then 10k in the bank. Is it a case of an emergency social care assessment? I don't know how long he has left but I'm dealing with anti social neighbour, terminal cancer, mental health and a some one who is elderly.

That sounds very difficult OP, have a hug from me. I don't have much expertise in this but I think if it was me I would call adult social services and see what they suggest.

Is there a local hospice? I’m not sure if you’re the same poster from the other day? If so I mentioned hospices on that post so sorry to repeat.
And yes, I’m sure it’s adult social services you’d contact.

It's a hard one to mention, but if you're looking at a relatively short timescale I'd contact a hospice. They were brilliant for my friend in her final months. X

You poor thing :(

i would contaxt his GP and yes, Adult social serrvices urgently. Make it clear that you need to leave and your dad isn't coping.

Right now, maybe order some Wiltshire Farm Foods in the right consistency for him for the carers to heat up.

See if he has any contact numbers for the palliative community team (or Google it for your area) and call them too. [Flowers]

Can he come to you to live for this short time? A package of care could be put in bed along with a hospital bed and any other needs. He won’t be alone, you be in your home away from noise.
dont worry about a spare room it can go in living room- I’m a carer so I see this a lot x thinking of you

You need a social work assessment. Was this not arrange as part of his discharge from the hospital? It should have been. He clearly needs more care that you can give. It's so tough but this isn't sustainable for you at all and you dad needs better care

Ring social services first thing Monday and request an assessment. You have to keep pushing as they will drag heels not wanting to pay.

Unfortunately I have found in my own experiences is those that shout loudest get heard.

Sending love this must be very difficult.

Sending you hugs. So hard xxx

I what way isn’t he coping when you aren’t there? Would an increase in a package of care help? Would any equipment in the home help? Would something like Wiltshire Farm foods being delivered help? Are you getting any support? What are your dads wishes?

I'm really sorry to hear this. My dad died last Autumn from terminal cancer. He was entitled to something called NHS Continuing Healthcare. It is fully funded care package for adults who meet the criteria - terminal illness qualifies and it is not means tested. For my Dad it was either carers 4 times a day, a live in carer or hospice care. He was, like your Dad, struggling along at home alone. I got him admitted to hospital after a routine appointment based on social care needs and then he wasn't discharged until the care package was in place. His GP was a good starting point. Adult social care had received an urgent referral to assess him but hadn't time to see him for 7 days (nothing urgent about that at all). It's a horrid time so I am sending lots of love to you and your dad x

that sounds really hard.

what happened when he left the hospital? Were you involved in his discharge process and were you in contact with his medical team before he came home? What is his prognosis?

you need to start shouting - loudly. His GP, the adult social care department, and any specialists / oncologists that he has.

Basically after staying in hospital he is broken and given up because he knows he isn't getting better, if I'm not there he isn't really cooking for himself or taking his medication properly, and because he has oesophagus cancer he was regurgitating at night prior to stent which has caused massive anxiety about choking at night time and not being able to get help. He has a hospital bed which I pushed for as he needs to sleep at 45', he also has a piper alarm. He isn't even at palliative stage yet, but he has lots alot of weight due to type of cancer and is really tired. He's just not the same man he was a week ago. Staying with me isn't an option, I have no where can stay and I have two children and I don't want to see him so poor.

Who had arranged the carers he already has? If social services then he will already have a social work team who will be able to increase the care. As previous poster said whiltshire farm foods deliver ready meals for the carers to heat up, you can choose the consistency he needs.

I had to refuse discharge, to get a discharge assessment l hence why we have a carer. I also have age UK coming to do cleaning one a week kitchen and bathroom. This is all meant to be short term as part of a reablement. I had to fight for this. I have no care plan and no idea what happens next. I called GP and couldn't get through, explained the situation and told to ring again 8 am. I have.managed to get hospital bed after alot of pushing. I have st Luke's coming Thursday. It's the GP I'm really struggling with, espresso as I also need to do a Respect form. I just feel there is communication between the devices, I having to email and call, fill in forms answering the same question. There no link up of care. And then to add that, the neighbour who plays music until stupid o clock, I have now had to complain to the housing association. The only good thing is dad is deaf and sleeps on the back room, but I've had no sleep 4 nights.

Having a terminal illness does not automatically mean you qualify for continuing health care (CHC), that is based on your health and care needs, things like skin, swallow, mobility, not a certain diagnosis.

it’s also worth bearing in mind that if your dad has capacity there is no reason for everything to be run past you. He’s entitled to make his own decisions and to having privacy regarding his own health. Being a NOK does not give you automatic rights.

Be careful that you are getting correct information on threads like these. As well meaning as people are these ‘systems’ are very complex, and also vary area to area in terms of what support is available.

💐💐i am sorry what a sad situation- both for your dad and yourself - I hope there is a solution - so sorry 🌷

I am totally confused by your comments, i have asked my dad every step of the way what he wants and I have advocated for him when needed. He's 80, poorly and lives alone. He isn't looking himself because he has given up and in pain. He has expressed he would like to go somewhere where he looked after and has his meals done and people checking in him. This is because I haven't stayed tonight because I am so tired and haven't seen my family in days.

Sorry for any confusion, the comments related to others posters giving you well meaning but incorrect advice regarding CHC and mental capacity.

it sounds like a very stressful situation. Normally an increase in the number of care calls will be offered before any kind of placement, unless that placement can be privately funded.

@TotallybannanasIm so sorry you are going through this - I was hoping that the situation had somehow improved since your last post.
I’ve no expertise, but hugs & solidarity.
He is so lucky to have such a caring & loving daughter as you 🌺

Would MacMillan or Marie Curie cancer care be able to provide any advice?

Based on recent experience, I suspect you will find the St Luke's visit to be more supportive and helpful than you've received so far - the hospice charities tend to be much more caring to whole families.

Hope that proves true.

Please ignore @Hairyfairy01 I have no idea what their agenda is. It’s definitely not looking out for you :(

Oesophageal cancer is brutal and absolutely grim. I’m so sorry for you and your dad, having to deal with this.

I think you will need to get very, very hardline with the council, as in, clearly stating:

• if they do not arrange care your terminally ill father will be at home alone and unable to eat, toilet and is at risk of choking.
• should he die without adequate and lawfully mandated care, you will immediately seek legal advice.

Your MP may be able to help, they can be really good in crisis situations where services need to pull their finger out. Don’t sugar coat it, tell them you are desperate and your dad is approaching end of life.

Is there any possibility of your dad moving to assisted / sheltered housing?

he probably needs an increase in carer visits to ensure that all his personal needs are covered. The usual maximum is 4, and they should do feeding / drinking / medication etc. Suitable food needs to be provided for then to heat up and give to him. But really he needs a proper care assessment at home so that his ability to eat / drink / move around etc is assessed correctly.

My 80 yr old fil doesn’t have cancer but he did go very steeply downhill, and it’s been a very hard adjustment. One week he was ok, then in fairly rapid succession over a few weeks everything just fell apart physically and mentally, and partly it’s because he has given up. He just wants to move into a home and be taken care of and not have to do anything for himself. But he’s actually just ok at home with carers as far as personal care and safety goes, so there no way he’d be funded to move. So he’s stuck. He’s bored, lonely, depressed, confused, frail, early dementia and utterly miserable at home alone. It’s a horrible stage.

Oh and can you apply for attendance allowance? This might help pay for things like cleaners, home helps etc.

Does he get any visits from nurses or anything? Any post operative follow up? DH found the community nurses very helpful when fil came back from hospital and they were trying to get everything sorted out.

I second getting in touch with MacMillan and asking them for advice.