BIL cancer and way forward

[SweetSunshineSA]

I have name changed for this as I am a long time poster but have never spoken about this part of our lives in detail as its not something we center our lives around but its there nonetheless.

There is a lot of detail to the this (as its a lifetime) and I cant possibly tell the whole story without writing a novel, so please ask questions if you feel they are relevant and excuse me if I dont cover all the information upfront. Also, we are not in the UK.

My DHs brother, my BIL has not had a very productive life as an adult. He hasnt held down a relationship or marriage for longer than two years, is generally a difficult character with strange ideas, he has been financially reckless to the point of almost living on the street and has never looked after his health. My DH wouldnt consider their relationship close but if you had to ask my BIL he would say that they are. Its a strange dynamic of a younger brother being the one who has always looked after the older brother due to his bad decisions and inability to 'grow up'. My BIL would say this out of love but my DH would say it was out of obligation. Neither of their parents are alive anymore so they are each others only immediate blood relations (besides for kids). My BIL has a daughter in her early twenties from a short marriage.

My BIL was diagnosed with a brain lesion a few years ago which was causing seizures, he was on medical leave from work (he was employed by us prior to this, but this is another story) and we discovered that he was living in a flat in town but had gambled away his entire insurance payout and sold all his belongings and was sleeping on the floor. We uplifted him and placed him in a residential home / care environment where got a roof over his head and 3 meals a day at our expense. His health deteriorated and we took him to the doctor and the lesion had turned into a brain tumour (grade 4 aggressive, Im not sure of the pathology). He underwent a resection, they removed the tumour and he had chemo and radiation. He returned to the care facility but is now in frail care as he is not coping with normal day to day life. The tumour itself has caused brain damage and his cognitive function is impaired. His motor skills are getting worse and worse. He is struggling with bowel control. My DH speaks to him once a week on the phone and I get updates from the nurses at the facility. All his care, medical etc are paid for by us at a fairly large expense but we can afford it luckily.

My DH is struggling with the idea that his DBs life is effectively in his hands and he has to make decisions about his care and well-being. Obviously, if the relationship had been close and 'normal' then I think he would feel different. We (my DH) have to now decide whether we take my BIL in for follow up brain scans. We have been told that the tumour will likely reappear in the next few years after the surgery (its been a year now), he has had one follow up scan which was clear. We dont have all the medical info as we havent always been involved in his oncology appointments and have struggled to get doctors to communicate with us when the patient is an adult himself so the messages we have received have been mixed, ie some say they would operate again if it reappeared, others have said they wouldnt.

We have noticed in the last few phone calls and conversations with his carers that his condition seems to have gone downhill again. What do we do? Do we go back to his medical team and have scans so we know what is going on inside his brain? Do we leave it and let a very aggressive cancer take its course? His quality of life is pretty rubbish and I dont see it improving. We have had to tell the care home to not let him out anymore as he is catching taxis and ubers at his free will and its not safe outside of the facility for him My BIL wouldnt be able to understand this conversation if we tried to have it with him.

I feel like Ive left out a whole lot of details which make the question sound quite callous and uncaring. What do we do?

@SweetSunshineSA Oh darling, I knew it was Africa, I'm in South Africa and I figured you were the same, based on your username and the things you've said about State help.

It is absolutely ridiculous how little State help there is here.

My heart goes out to you. I'm glad that you and DH can afford his care. He is lucky. But I am with you and a few other posters... please don't feel guilty when you do decide on palliative care. You have gone over and above for him.

I'm sorry you are in this position.

In order to have palliative chemo or radiotherapy he needs to be able to turn up, and generally behave throughout having his line put in, sitting through having the drip, lying still on the radiotherapy machine. Are any of these things he is physically capable of?

Do you know the name of the cancer he has? That would help a lot in knowing if there even are options left.

Also he needs to be well enough to withstand the treatment. In rough terms this means a performance status of 0-2. I think you are describing someone who is a 3 at best.

ecog-acrin.org/resources/ecog-performance-status/

Good luck with the Oncologist OP. I hope they can give you some concrete answers and a better idea of a medical plan. It sounds like an incredibly tricky and delicate situation, especially given that BIL ‘seems’ to have some sort of capacity to make decisions but clearly unsafe ones that would almost certainly be disastrous to his safety.

I wonder if you sometimes dread it when your phone rings 😖.

MN baffles me sometimes though. Posters who blunder onto threads without reading the various shades of greys in people’s personal situations.

Yes he had capacity. But whether his decisions were wise, Im not so sure. Heis (was) a very head-in-the-sand personality and chose not to biopsy the lesion at first. It was only when it became peach sized and the doctor told him he would be dead in 6 months did he agree to the surgery. He has never thought about 'tomorrow' and so I dont think he considered that his condition was life threatening or paid any attention to what this time of his life would look like. It would have been a futile discussion with him at the time. Much like asking if he thought it was necessary to licence your car, or save money, or pay child maintenance.... He would just shrug it off. Real peterpan syndrome unfortunately.

It takes a fellow South African to understand.

You cannot live here without your wits about you and some financial security otherwise you will get eaten by the dogs.

Yes the phone calls....

Happy Christmas in October. I need money to pay the Uber driver because I have messed his car as I wasnt wearing my adult diaper. They are kicking me out because I stole someones shampoo.

It goes on.

Thank you - Will look at your link.

Well it's def not South Australia ( free here too ). South Africa seems to be a part private /part public system. So I'm not sure where OP is . Saudi Arabia? Best wishes to you and your DH and BIL.

OP, you are not in a position to make a judgement about his capacity. This is a skilled area, based in statute. You need to get adult social care involved and stop playing God.

Thank you for your insight.

Oh I’m so sorry I’ve just seen you’re not in the UK

@AnnaMagnani

Definitely a 3. That makes things quite clear to me.

I am waiting for his oncologist to call. Most likely will have to pay for an appointment, not likely to be able to discuss a 3rd party on the phone. Or they will just tell us to book the scan without a chat.

This so true. I spent 6 months in hospitals after a car accident. Private hospitals. And I always said that you have to be AWAKE in hospital!! From trying to steal you meds or just giving you the wrong meds (one hospital tried to pass of someone else's heart medication as mine - I had broken bones - nothing wrong with my heart!).

Yes, the care can be fantastic, but it's not perfect.

I feel so sorry for your husband. I completely understand why he feels angry and possibly resentful that he has been put in this position of 'authority' over someone else's life.

South Africa.
Private healthcare is world class at a price which we have been paying.
Public healthcare is dismal and you dont want to be sitting in a government hospital hoping for cancer treatment for an aggressive brain tumour.

There is no part private/part public system. Its either or.

In the uk it would be a given to have the scan to get the pain relief/treatment. If you are having to pay that is tricky. However what would do if it was you? I think that’s the only way to look at it. If you weren’t subsiding him is there grants available as he has no income etc.

Paying is not the problem. We have been paying out our ears for years for him.

Any govt grant would be about 5% of the cost of the scan so he would never be able to get this for himself anyway. We have never bothered with applying for a grant because this would involve sitting in a govt office from before sunrise with a obese man in adult diapers hoping to get seen to. Im not eve sure if he still has his ID documents which he would need as he burned his life to the ground in a manic episode of selling all his possessions to sustain a gambling habit.

We are not in the UK

You are being very naive. OP's BIL will have no quality of life, even if they authorise scans and the surgeons operate if the tumour has returned.

OP's DH isn't NOK (that will be his adult daughter) and they have no power of attorney regarding his health. They are simply paying a lot of money for him to be cared for in a care facility.

The issue is that they don't know what BIL's wishes would be about another operation to prolong his life, given that the quality of that life is very poor.

If his cognitive function is significantly affected a lasting power of attorney may not be possible. It depends on capacity. In the UK, lack of capacity would result in the Office of the Public Guardian appointing someone to make decisions on his behalf. OP and her DH could apply to be the appointee, but they would need to research the role a it involves keeping detailed records.

Exactly! You seem to have decided it’s up to you and DH but legally it’s probably his daughter’s decision. It doesn’t even sound like you’ve involved her at all. Regardless of what you presume about your BIL and his daughter she has the right to be involved.

And yes of course you get the scans! You have no idea what the possible diagnosis and treatment options might be. Maybe it’s totally unrelated to his prior issues. You never know. I find it hard to believe you are really “good people” if you are considering letting this man continue to suffer just because you don’t want to pay to find out what’s really going on. If you couldn’t afford it that might be different but you’ve clearly stayed multiple times that you can and thay “it’s not about money” so I can’t fathom your thinking here.

If you told us what country you are in which of course you never will even though it’s hardly outing to identify an entire country people might be able to help you find resources to help fund or provide care for your BIL. But you won’t do that either I’m sure.

If you read the whole post you would know that I have said what country I am.

I am involved. Probably more involved than my DH on a practical level. I do most of the 'doing' while he has a phone call every week or so. There is some much damage to the relationship prior to diagnosis, I am happy to help my DH with this.

I could go into his relationship with his daughter but that would be fair on this forum. She does know what is going on and she is kept informed.

Actually in the UK it would not be a given to get the scan. People are discharged from Oncology all the time when they are too unwell or there is no further treatment. Not being able to consent would pretty much end treatment.

It's much harder in a self paying system as things like scans will be offered, as they are billable, regardless of whether they will change management.

And if they are offered you think you should have them as why else would they offer?

I’ve only read your responses but I wanted to say that I have known 4 people - within my family, friendship group and my exH’s family - all stage 4 brain tumours and all gone within 2-ish years. Honestly I think all that really matters at this point - you can take out or leave all the history, it makes absolutely no difference - is that he is comfortable.

Each of the people I knew had different responses (or the families did…) to how they were treated at the end. The ONLY thing that mattered was how comfortable they could be made to feel. Treatment changed nothing in terms of their time frames. Every single one was gone within the same time.

edited to add: with my experience, if I was in your position, I don’t think I would be overly bothered in getting the details. If your H is finding the whole process difficult, keep things as simple as you can.

It's not certain that further scans would be forthcoming even in the UK. I had a relative with an aggressive brain tumour. They had surgery, radiotherapy, chemotherapy but it was almost inevitable that it would return and when symptoms reoccurred we were told no further treatment would be possible. We enquired about a scan, but were told it wasn't needed, as it was already known what the issue was and the only option was palliative care.

Do tell us about the South African statutes involved, and the South African adult social care system.

Or have you not read OP's posts properly?

OP isn’t in the UK, and social care don’t need to be involved to assess capacity. In the UK if someone is judged to have lost capacity with no LPA in place, the office of the public guardian will appoint an officer of the court to oversee their affairs if no family are willing to take on the role.