Advice and perspective and understanding needed, please.

[picklemepopcorn]

My dad is terminally ill, brain cancer. He's at home, at the point where he is getting too weak to walk. He is unable to communicate. He likes his food. He gets distressed about his weakness and dependence. He may be in pain. My mum is resistant to carers, but struggling to cope emotionally and physically. I live at a distance but go and stay for a week a month.

My question is this, and I hope it doesn’t offend anyone. Can the medics not prescribe something that will help him doze away his last weeks? The only enjoyment he has is food- he can’t really watch tv, likes the noise of the radio but can’t follow the content at all, and when he tries to talk to people gets agitated because we can’t understand what he says. Then my mum gets cross too. She isn’t the best nurse, in many ways, but hates having other people in her space and is a control freak. When I stay, I can offer emotional support and do errands, but have to be careful not to be seen as interfering. It’s extremely stressful. I can’t stay much more than I do, partly because of work, and partly to protect myself emotionally from my mother. The hospice nurses haven’t been able to work with her, either.

Please reply gently.

[WhatWouldLeslieKnopeDo]

I'm sorry. This must be incredibly painful for your dad, and for you

Do you think he would be better off in a hospice rather than at home? I am not sure whether you could arrange that without your mum's consent though, if your dad is completely unable to communicate.

If your mum is controlling, is she keeping his medical team up to date with his symptoms etc? Do they know how difficult he is finding things? They might be able to prescribe something to help him feel less agitated.

[picklemepopcorn]

He is taking various things, which may or may not be helping. Mum is very controlling. We keep the medical team up to date where we can, I’ll ring at intervals and make sure they know what is happening. She is inclined to manipulate the facts to get what she wants. She'll tell someone it’s awful because she wants some support, then the next person it’s fine because she doesn’t want them to interfere. It's when I stay over for a week that I get a proper picture of what is going on.

He falls most days now, and shouldn’t really be going further than the bedroom. He gets up and wanders off determinedly and she can’t really stop him. Last time he fell on the stairs and hit his head...

He's not happy, and I wish they'd just dope him up! I think the medics are so afraid of euthanasia (understandably) that they can't do what would be kind- keeping him sleepy.

I don’t think he is ready for a hospice- he is very aware still. But I might start the prep work with Mum. She would find it more manageable. But she'd only visit him for a couple of hours a day, and he'd be lonely. Unless they were helping him sleep. I wouldn’t want him to go in until I was able to stay with him, most of the time. I'll talk to my sister and the hospice team.

Thank you. It’s helped to clarify my thoughts.

[OllyBJolly]

Horrible situation. My sister has same awful disease but not yet at that stage.

It sounds like he does have some quality of life albeit very limited so the medical team won't dope him up to make it easier for those around him. He is their concern, not the family. And it's so hard for those around the person. Our McMillan nurse has been wonderful.

I don't think your mum is necessarily being manipulative. I'm the main carer for Dsis at the moment and at times it's absolutely fine and we actually have some very nice times. Other times she is just wailing with pain and misery - sometimes in public - and I am so close to just leaving her and running away. She has no concept of night and day with the result that this week I've not had more than two hours sleep a night. I daren't nap during the day in case she falls and I don't hear her. She goes in to respite on Friday - which she hates and begs me not to take her - and I feel so guilty that I'm looking forward to it so much. I feel a responsibility to be upbeat and cheerful but someone just has to say something nice and I can cry for an hour. I'm usually the calmest person in the world but these days I'm short tempered and impatient.

Sorry - didn't mean this to be about me. It is horrible all round. I am so sorry you and your family are going through this.

[rizlett]

It might help for him to go into the hospice [if there is bed availability] for some respite care assuming your mum is in agreement - during which they can thoroughly review the situation and sort out an appropriate medication review.

It might be that if he is very distressed from day to day they prescribe a syringe driver [where he is given a mix of medication to make him comfortable] although sometimes this won't happen until he is no longer eating.

Is he is pain op? Is he taking current medication appropriately? This may increase his restlessness.

A respite break can be as short as a week which might make it easier for your mum to accept.

[picklemepopcorn]

Sorry Olly, I know it’s hard.

I'll ask about a respite week.

She is being manipulative, sadly- she lies about what has happened. I understand what you are saying, this is a bit different. 'Oh it was just a bump' to a professional, 'he fell really hard' to someone she wants sympathy from. She has given different timelines for incidents, according to the argument she is trying to promote. I know it is hard for her- but she isn’t a reliable witness!

As for medication- she can be a bit unreliable about it. She worries about the long term effects of too much paracetamol for example (!). She 'uses her judgement' about what he should have when.

It’s very borderline. Medics are aware.

I'd just like him to be more peaceful. He takes various things that are supposed to help- antidepressant/nerve pain blockers the name of which I can’t remember. Steroids, anti seizure meds, eye drops of different kinds, etc. No heavy duty pain killers as yet. I just worry about him. I don’t know how long this will go on, and I’m afraid he'll fall down the stairs. He's fallen in several awkward places where it’s been hard to get him up.

[rizlett]

This is difficult for you all. As well as your mum unintentionally witholding his medication which may contribute to his distress/ill health.

Does your Dad still have capacity to consent to treatment op? Does your mum have health issues too? Have they been referred to social services and are you in touch with Macmillian? [assuming you are in UK]

[OllyBJolly]

I really, really struggled with the falls until I discovered the local Social Work run a "Responder" service. This is a group of carers on call who will attend a house immediately to help in a crisis. When we've had falls where I can't get her up I call and they are here in minutes. The combination of extra weight due to steroids and just the floppy muscle tone makes lifting so difficult when there's no cooperation.

The idea behind the Responder service is that the alternatives would be the over worked emergency services. This is Aberdeenshire so might not have them in your area.

(maybe your mum just wants someone to acknowledge how difficult it is for her?)

[picklemepopcorn]

We don’t have responders unfortunately. We have asked. However, we are gradually building a network of people she can call on who can help.

The relevant services are aware. She agreed to carers in the morning, to wash him and give him breakfast but she cancelled them after a week. The services are trying hard to accommodate her. I guess the time will come when they step in regardless of what she wants. Just not quite yet. We need to keep a good relationship with her so we can support her afterwards, as well. We can’t do anything that would risk her becoming more difficult. If she locks us out we'd never be able to get in, apart from anything else!

It’s hard to know whether dad has capacity. When she isn’t present you can sometimes tell what he is saying and know that he has understood you. But then again, sometimes you are wrong!

The nurse said something awful about DNR. She said if he doesn’t have one and he dies at home, they will try and resuscitate despite how frail and ill he is. Last time we asked, mum was adamant that they should do everything possible to bring him back.

[rizlett]

Maybe speak to his gp and see if they will come out and complete a DNR form - whilst he still can communicate to some degree - so that it's his wishes that are taken into account rather than your mums.

Is your mum aware of his prognosis? Have you considered/have power of medical attorney?

www.gov.uk/lasting-power-attorney-duties/health-welfare

[rizlett]

It also sounds like your mum needs support to come to terms/accept what is happening but I guess she might refuse this?

[picklemepopcorn]

She has only recently accepted that there is no more treatment and that he isn’t going to get better. She hasn’t yet processed how little time he has. She won’t let anyone see him without her. She wouldn’t allow that conversation because it might upset him. What actually upsets him is seeing her get agitated. The main message of our childhood was 'don’t upset your mother!'

I'll make some calls shortly, touch base with the hospice nurse and SW.

[Titsywoo]

Sorry but I volunteer in a charity working with people with life threatening and terminal illnesses and what you are describing would be seen as a safeguarding issue. I think you need to report it to someone so your mum can get some support with how she is dealing with this and your dad can get the correct care that he needs.

[picklemepopcorn]

It is Titsy, but it needs careful handling because it would get worse rather than better. This is my mum being cooperative...

I was open with the nurses from the start. It’s about how to get the best outcome. After 57 odd years, if we upset her then he will be upset too!

[FoxtrotSkarloey]

Hi OP, I've just come across this so hopefully still of use. I'm so sorry you're in this situation. I lost my Dad to cancer in May and whilst it was truly horrible and stressful, we did manage to keep him at home, as he wanted. My mum wasnt exactly difficult, but did have some very clear ideas and wasn't always open to listening so we had to manage that too- it's just an horrific and frightening situation and I think she was just struggling with chaos of emotions.

A couple of things which may help:
-Macmillan typically coordinate all services, so make sure you have the contact details and ask any questions you can

• you should have the end of life/ care plan in place or they will try and resuscitate him
• have you had occ health round? They can provide all kind of walking aids, wheelchair, seat cushions
• Are you under a hospice? Many can offer hospice at home help rather than it having to be respite
• if your mum isn't sleeping or is being kept up, you can ask for a night sitter from Marie Curie or via the hospice, organised via the Macmillan nurse. They're amazing.

I know this is dependent on your mum alllowing them in- for us it got to the point where mum cried on the phone to me and admitted she couldn't cope before she did, and then the house did turn into Picadilly circus but it was actually a relief to feel the cavalry had arrived and we weren't alone.

Also, thinking about it - hospice or Macmillan could help with counselling for your mum (and you).

All the best OP, my heart goes out to you.