What to do - head/neck cancer DM, depressed/dementia DF

[Ritaskitchen]

I’ll try to keep this short. Don’t want to drip feed.
DPs very ill very quickly. Previous v fit and healthy.
DM - head/next cancer, had operation, cancer returned aggressively before start of radiotherapy. Aggressive 6 weeks radiotherapy now done. She is exhausted and ill.
DF - diagnosed w depression. On
medication for it which seems to do v little. Is now on waitlist to memory clinic. Can’t remember conversations for yesterday, irrational fears, very down. Sometimes a lack of self care - eating/drinking/washing. I suspect dementia.
I live outside Uk. Since Jan visiting every couple weeks for a week or so. Not sustainable long term.
Dsister lives down the road but v v overwhelmed
Ds lives 2 hours away but self employed and complicated relation shop with DPs.
DM doesn’t want cleaner. Had a carer after op but said didn’t want her. DF has always been very selfish and does almost nothing other than basics and has to be promoted to do it, every single time. He told me this week that when I leave he will starve to death - he has about 3 weeks worth of food in the kitchen.
I cant make them do anything I know but I also feel they are becoming too reliant on me. I swoop in - cook, clean, etc. Then I have to go home away from the UK.
I can’t do this forever. It’s been since middle of February.
Any tips on persuading them to get some help at a minimum a cleaner 1-2 times a week who could do some cleaning/washing/ironing if/when (and maybe never) my Mum is back to a stronger condition.
We have the POA forms for both all sorted out and registered.

I'm sorry to hear about your parents' sudden ill health.
I would suspect dementia in your father too, from what you've said. He has probably forgotten the sequencing to prepare food (hence the 'starve to death' comment).

My mother (dementia) didn't want a carer either, so I organised it and rang her the day before and said a lady was coming to help her. I did not use the term 'carer'. I used Home Instead who provide 'companion care' which means the carer will do anything which needs doing - laundry, preparing a meal, hoovering, accompanying to appointments etc. They will also offer personal care like dressing/washing too if needed.

The manager of the care agency will come to the house to do a needs assessment, and you really need to be there when this happens. So if you can arrange that meeting before you leave that would be the best idea. Then they will give you a start date.

Once it was all arranged my mother did not object at all, but if I'd consulted her she would have said she didn't need it. There comes a point when you have to put the POA to use and do what is best for the person, rather than what they think they want.

Thank you @catofglory I agree with you.
Unfortunately I know they wouldn’t agree to had a helper.
They had a helper, which I arranged. My Mum was much better - it was between the cancer op and radiotherapy starting and none of us knew the cancer had come back and the radiotherapy would be stronger.
And my Mum kept saying she didn’t want her. So we had to stop it. My Mum has capacity.
They are in the queue for a social care assessment. Who knows when that will be.
My Dad has always been very lazy - he only has ever really done what he wants. That combined with what I can now see is dementia is a difficult combination.
He has moments of kindness and care for Mum but they are fleeting. He will rarely do anything of his own motivation/decision - unless he is interested.
I have asked my Mum to really give some serious consideration to a cleaner.
The sister who lives nearby loves my parents very much but she works full time and is single and deeply neurodivergent. She relies on my mum for social/work and emotional advice.
Heres hoping mum will agree to a cleaner.

So sorry to hear of your parents situation, it’s immensely distressing watching them become ill & frail. I’ll just tell you our situation, if you don’t mind.
My DPs are in a similar situation but a but further along (formal dementia diagnosis a couple of years ago).
We have a similar agency to HI to clean weekly & they are wonderful; I’ve tried to get the hours increased but neither DF nor DM will have it - he is too proud and she is unaware of the need.
Reading through the many excellent posts on here, if our DPs refuse help then unfortunately the way forward is to wait for a crisis - much as that pains us. They have capacity & that means that they can make decisions, whether we like them or not.
So over the last few years, I did my absolute best, DH and I exhausted ourselves and become extremely anxious, but nothing practically changed, despite their health deteriorating.
We have had a couple of relatively minor trips to A&E (heart & falls related) but nothing serious enough to make them change.
I know that a massive event is just around the corner and until that happens we just have to wait.
Then it’ll be carers / homes / hospitals.
Please don’t feel guilty at not being constantly present for them; it doesn’t help, really.
Best wishes x

@Ritaskitchen It sounds as if you are doing all you can. If your mother completely refuses help, as the PP says you will have to wait for a crisis which forces her to accept it.

@DoNoTakeNo thank you for writing about your experience. I think you are right.
I am a 1 hour train ride 1.5 hour flight away plus the time at the airport and I kind of had an epiphany today. The best thing I can do when they won’t accept the idea of help is to research and find out how the UK system works so that if/when they do accept help or a home or hospice is just necessary etc I have realistic expectations and know what to do to get it sorted.
Ive also realize that I can’t always stay at their house. There is a premier inn really close by thankfully.
Thankfully one sister is really happy to do admin things. My DF is trying meals on wheels and DSis has agreed to be the point of contact. Me having a non Uk phone number is a bit of a problem.
Thank you again.

I don’t know how much they have in savings, but it’s worth referring them to their local social services. Explain the circumstances and depending on waitlist for their area they should get an assessment of their needs . Trouble with organising carers yourself is you probably have to pay for them whereas either DPs should or council if they can’t afford it.

Maybe Wiltshire food deliveries that literally only require microwaving might work. But even then when I bought microwave meals for DPs DF insisted on cooking them in the oven because that’s he was used to.

Unfortunately you may need to wait for a crisis to force the help they need on them or get them on social services radar.

The are on the referral list for a social services referral. So we are waiting for then.
I hope they are truthful about what is going on. Long term I can probably visit M-F once every 6 weeks maximum.
DF will microwave but won’t use the oven.
In a way my mums peg feeding tube is a blessing as she can keep herself healthy and fed and practise swallowing with Louise/banana/soup.

@Ritaskitchen I’m sorry but non agreement is not an option any longer. They have to be told. Yes, awful - but there it is. They are unreasonable and life has to change. Why people don’t help is beyond me. Say what you can reasonably do and you snd dsis need a clear strategy. You must be firm.

But with respect, @MeetMeOnTheCorner how can one be firm if they refuse to acknowledge there is a need?
The balance between appropriate activation of PoA and destruction of any relationship can be incredibly delicate.
I know that my DPs will simply refuse to answer the door to whomever they feel shouldn’t be there.
Any genuine tips will be appreciated.

What a hard situation.

I think you and your sisters have to agree between you what your collective and individual boundaries are. Even if you are willing to do different tasks, it will make things much easier if you three are working as a team. That way, your parents will get a consistent message about what you three think needs to happen, what help is available from you - and what isn’t. DH and his sister have done this really well - he helped her set and enforce the boundaries that she’s wobbling on by telling his dad directly what she can and cannot do. DH lives outside the UK so can’t do the day to day - but he can help his sister not get overwhelmed and guilted into doing too much. When they need FIL to accept something, they deliver a consistent message individually and jointly, which they agree on beforehand.

If your mum will not budge on accepting outside help, then you three need to be equally strong on your own boundaries. If you are not willing to swoop in all the time then don’t do it. Let it fall, let the crisis happen, and then the changes will follow.

I would not expect them to be truthful. Can you ask your sister to be present for the assessment and provide an independent voice?

@MJagain I think I will ask them when the appointment is and if I can I will call them when it’s happening. It’s unlikely any on the sisters will be there due to where we live and work commitments.

@Wallywonker72I really like this. To an extent we have started doing this.
I have decided that other than soup I am not cooking for my DF anymore. All that I cook has to be frozen and he doesn’t defrost and eat it. So it’s just sits there.
I have started not staying at the house. There is a thankfully cheap hotel chain up the road and I have been staying there.
DH and I have agreed no more bank holidays - these days off are really important to us.
And I need to decide that as I m likely to need to visit regularly how this will look eg frequency, going forward. Barring medical emergencies. I’m thinking visit Monday to Friday and visit every 6 weeks at the moment.
I have also been very clean to one of my DSis that I absolutely cannot be a carer for my parents when I live over 1000km await from them. When I visit I can help out with cleaning and go to appointments and do a bit of cooking and housework etc. But long term once every 6 weeks definitely isn’t caring. But I can help with admin, making arrangements etc from my home.

The boundaries you are setting are very sensible, given they have no insight into their situation or the impact it is having on you. And getting a decent understanding of how things work will stand you in good stead.

You do need to know what their savings/financial situation is for future care planning, and someone needs to have some way of accessing their money in an emergency.

Longer term I’m afraid there will be crises so holding back some of your time and energy to deal with those might be helpful.

I'm glad you are thinking in terms of setting your own boundaries about you will and will not do.

As your mother has capacity you cannot overrule her choices, even if they are bad choices.

Unfortunately I doubt the SS visit will accomplish anything. Your mother will say they don't need help and SS are generally very happy to hear those words as it means they don't have to spend any money, and they can't overrule her as she has capacity. It's a case of waiting until things deteriorate to the point where your mother admits she needs help.

Brilliant advice already especially about maintaining siblings communication and united front.
One thought- does one of you have on line access to their nhs records? This can e so useful from a distance. Check what’s needed- we had to get dm to sign forms for the surgery.
also is there anyone outside your immediate family they would listen to? Old friend/ family member/ vicar?
carers uk may have useful advice too. You deserve your life too.

Unfortunately the rub lies in the 6 weeks barring medical emergencies. I suspect these will unfortunately come thick and fast unless they get some care in if DF isn’t eating or drinking regularly and it’s almost impossible to maintain any sensible boundaries when one of your DPs is in hospital. Sorry as I know how hard it all is, but it’s worth also thinking about what constitutes enough of an emergency for you to come over - you may find that bar grows higher over time as compassion fatigue sets in.