AIBU to continue to do what I think is right or has the time come to give up?

[HumptyDumpty1947]

At the beginning of the year we were told my father had around three months to live. In March, whilst an inpatient, he caught the coronavirus. After a difficult few months he is now negative. However the hospital have said his mental and physical ability has declined so much that he cannot go home and want to discharge him to a care home to die. They have confirmed I would not be allowed to visit him . He is unable to see or hear sufficiently to use FaceTime etc. I want him to come and live with me .Unfortunately last year his humerus was fractured by patient transport (they have admitted negligence ) and he now needs the help of two people for some aspects of personal care. The Clinical Commissioning Group (I had never heard of them before- they seem to be some sort of quango) have said it would be £100 a week cheaper for him to go into a care home than to be with me (with some support ) and have now said they want to go to Court next week (court of protection) to make this happen. I work so don't qualify for legal aid and am told it will take all of my savings and some ( a loan?) to get representation/defend my position. However the Barrister does feel confident that they have acted unlawfully and has given an 80% chance of winning. I just dont know what to do. My father is now very ill (I have seen him every day for the past ten years and the thought of not being with him at the end breaks my heart ) but am I being ridiculous? I will be broke and m lost likely in debt. What would you do? I dont have children and it would be my own money , if that helps.

That is an awful situation to be in. Whichever way you go I hope you can be at peace with that decision.

I think you need to separately consider the benefits to him and to you. Is he aware of his surroundings? Is he able to express an opinion? Are you satisfied you'll get sufficient support at home? Can you afford the debt? If you hold out is there a chance he won't make it as far as leaving hospital? Is the mental/financial toll of a case going to leave you less able to support him? Are you able to cope with the guilt (not that you should feel guilty) of allowing him to be sent to a home?

It's there another option? Hospice? Different home that allows visitors? Paying towards at home care to avoid court?

I'm sure there are support systems out there who you could talk this through with, hopefully someone will be along with a suggestion.

And please don't feel you need to answer those questions, it's just something for you to think on.

What a difficult situation.
The CCG are the body that agrees what type and level of care is provided by GPs and hospitals in your area. Basicially they pay.

I know its difficult to explain things on here, but CCG don't often go to the Court of Protection - it costs them a pretty penny as well and they are all strapped for cash. Does your DF have a large asset, eg a house. The NHS / CCG will only pay for nursing home placement if there is a high degree of nursing care required or if the patient has been on a section 3 of the Mental Health Act.

Look - its complicated and expensive to go through the Court of Protection. Find your local Patient Advise and Liaison (PAL) service and explain the situation as you understand it to them and ask them to find out exactly what is happening.

If you do decide to go ahead and care for your DF at home - do you know exactly what you are letting yourself in for. It sounds like he needs continuous care, so you would be unable to work. And the situation would be dire if the CCG refused to fund sufficient care to support you. As you don't have any family to help you it would be very difficult to care for someone so frail 24/7. It's a guessing game for how long someone will live when they are so frail - could be days, could be weeks, could be months. The situation in nursing homes is improving - we're hoping to see a family member in the next week or 2.

It's not just a matter of being able to see your DF every day, but also providing the right level of care. and yes the CCG does have to consider the financial side as well. Had a sort of similar situation in our family - one spouse didn't want the other to go into a home, but couldn't provide the level of care required. Nearly ended up in the Court of Protection - we were quoted in excess of £25k to defend the case. The spouse was eventually persuaded and the patient was well cared for in a nursing home. She lived for a couple of years.

Another way to think of it would be as a short term placement before coming home to you - if a suitable and sufficient care package can be agreed.

It's not an easy situation to find yourself in - especially at the moment. I do understand. It's always good to talk these things through especially if you don't have any family to support you in your decision.

I'm so sorry you're in this difficult situation, OP. I honestly don't know what I would do in your situation. Sorry, I know that isn't helpful. I am sure that you will find the right way forward for you and your lovely dad.

Gosh that sounds so tough. I'm sorry for what you and your dad are going through.
Great suggestions worth considering mentioned above by Dwellin imo.

When considering the financial imitations of going to court, are you likely to inherit from your dad and could you absorb the cost until you would receive the inheritance?
I really wish you both all the best.

*financial implications...

Thank you. There is no inheritance and the hospital have said he wouldn't be accepted by a hospice.

What a desperately sad situation.

Why can't you represent yourself in court?

And won't there be some compensation from patient transport that could go towards additional care costs at home?

I did wonder if I could represent myself in court but dont know if you can or how to go about it?

There is a little compensation which I thought might go towards his care as he deteriorates? It wouldn't be for me to use for legal costs anyway - it is his.

I am sorry you are going through this. I would probably have asked them how they planned to stop me visiting my dying parent, and what provisions they had made to comply with their obligations under the Equality Act to enable him to communicate with me (EA provides protections for disabled people).

A hospital recently kept a man alive despite his legally binding advance directive (and his family) stating he refused treatment in the circumstances they were forcing on him, so that the hospital could force his family through Court of Protection which did at least honour his clearly expressed wishes and oblige the hospital to stop treating him. It is supposed to be a criminal offence to treat someone in contravention of a legally binding advance directive refusing treatment.

Just because a powerful institution goes to court does not mean they are right. Organisations are still operated by fallible human beings with biases and ethical shortcomings.

Hospitals and CCGs behave unlawfully all the time. Having the power to hold them to account is another matter - the imbalance of power is significant.

How reputable and experienced is the barrister?

I know this is an emotional situation for you, however you have to look at this from a practical point of view. You would have to put your life on hold indefinitely and wear yourself down in the process along with financially ruined.

If he needs two people to help him then how are you going to do this alone 24 hours a day?
Are you prepared to change his nappies several times a day and put him through the indignity of this?
Are you prepared to shower him?

Would he want you doing this? My children know that I wouldn't want to burden them with that level of care.

You wouldn't be able to work unless you could afford reliable home help.

It's not about giving up, it's about doing what is best for him and you. There are some nice nursing homes and with a top up from you, there is more options. That's where I would spend the money ensuring he's as comfortable as possible and well taken care of.

FaceTime look at the accessibility options - apple have fantastic stuff built into their devices to help with communication. There are also table holders that are bendable to bring the ipad closer to him. Gestures could easily be set for him to access the iPad, and through these he could video call you as well as having text to speech etc.

If he uses an hearing aid there are also specific settings on the devices to work together.

The barrister won a similar case against the same CCG a couple of months ago. I have also consulted another barrister (who is meant to be one of the best in the field) and she says they have acted unlawfully and we should win quite easily. But who knows. I think its the money that is the main issue - I could have used some of it towards the additional care he will need, respite, his funeral etc

I have cared for him for many years and dont mind doing it now - it is a way to repay him. I had hoped that I would be able to pay for some respite, helping hand but if I have to pay so much for legal help I think this will be impossible. Unfortunately he really doesn't have mental capacity now and his hearing and vision are too poor for FaceTime etc. I have tried everything. He knows its me by sense of touch and smell so contact really has to ne in person.

I am a person of principles and really feel for you, OP.
My DH and I got into an awful situation with SS about how my DM was causing elder abuse to my DF due to his dementia. We weren't believed [until it was too late.]
We were trying to protect my DF but were looked at as the bad guys by SS. It's very hard to try and address wrongs in 'the System'.
You probably won't win.

I suggest you consider the prognosis of your DF.
Then consider your mental health.

I'm sure you will make the right decision although it won't be easy.
Good luck.

I’d consider self representation but would you have to pay their costs if you did lose?

Could you involve your MP? Heartbreaking situation.

Oh gosh, OP. This is so difficult. I have no advice really. Only sympathy.

I think, as adult-children, especially those without siblings to help out, we feel a tremendous burden of obligation towards our parents.

My dad died three years ago nearly, and was very ill in the year before he passed. I had such huge guilt that I couldn't be there every day to help care for him. I lived 2 hours away and had a full time primary school teacher job. The stress and the guilt was incredible.

What helped me a bit was to ask myself "what would 25 years ago dad have said to do?" He was fiercely protective of his family, and only wanted us to be happy and safe. And I feel like he'd have said something like "don't worry about me, live your life."

OP, would your dad have said something similar? Would he want you to financially ruin yourself for the sake of a few weeks/months together? He wouldn't want you to have this tremendous guilt and obligation.

As it happens, in my case, my dad was actually doing much better, and was seemingly almost recovered when, early one Saturday morning, he just quietly slipped away in his sleep. He was only 62, but in many ways, I was grateful that he'd found some peace.

My father is now very ill (I have seen him every day for the past ten years and the thought of not being with him at the end breaks my heart ) but am I being ridiculous? I will be broke and m lost likely in debt. What would you do?
I would have my father at home with carers coming in to help. They can come in 4 times per day to help. If he hasn't got very long left to live I would spend the extra £100 per week having him at home rather than having him in a care home where he couldn't have visitors. I would go to court.

I would not be able to live with myself if he went into a care home and he was left without loved ones around him when he passed.

I know this will be an unpopular response as I have seen many posts where MNers are urged to think of themselves. I believe we are meant to be of service to others.

I would sooner run up some debt than abandon my father to a care home where I couldn't visit. I am coming at this from a position where I had a similar choice to you. I insisted on my father coming home to die (because that is what he wanted) rather than go into care but sadly mine died before that could happen.

I hope you are able to have your father at home.

I know this will be an unpopular response as I have seen many posts where MNers are urged to think of themselves.

Sometimes thinking of yourself is knowing that you will carry on living for a long time afterwards and will you be full of guilt or at peace with your decision.

OP, you can represent yourself so if it’s just the barrister fees making you wobble about going ahead, then do consider that. Have you spoken with PALS?

I really hope all goes well for both you and your father.

This has just popped up on my facebook feed. It might help some older people, even if not your DF, op.
www.noisolation.com/uk/komp/

Are you any closer to making a decision?