DF with dementia won't accept care from anyone DM

[Parentproblems22]

Probably an issue that has come up before, my very elderly DF has dementia (often confused, angry, forgetful but generally knows who he is) as well as physical issues including immobility and incontinence. He's cared for at home by DM but she is really struggling as she's not young herself. The problem is that he refuses all other care. While there isn't much money my mother would be willing to pay for help but having spent her whole adult life as a dutiful wife she can't go against his wishes. The situation is becoming unsustainable as DF is deteriorating physically and mentally and becoming increasingly angry and (verbally) abusive towards DM. Is there anything that can be done? DM won't organise care as he says he doesn't want it but I think if social services says it's necessary she might accept it. How can we get social services to take notice? He's been previously assessed but has gone hugely downhill since then.

Title should read: DF with dementia won't accept care from anyone but DM

Can't really help - similar situation with my mum
Eventually she fell and was taken to hospital and my dad refused to have her home. They assessed her and she has moved into a care home yesterday
She is NOT happy (early onset dementia) and is being quite manipulative over it and my dad is upset but it couldn't go on any longer and she needed FT care

I guess she needs to get social services involved and say she can't cope anymore. He needs assessing and it sounds like he needs to go into a specialist place because he is abusing your Mum and it's only going to get worse as he deteriorate

www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

It's such an awful situation - we have gone through the same - FIL and MIL both early 80's when it started - FIL double incontinent, confused and could never be left- needed help bathing/washing/dressing. At the start DH and his 3 siblings helped and between them and MIL they managed a while then he started falling resulting in a lot of ambulance call outs. MIL saw it as a failure on her part as a wife when he went into care in the end he died in a care home aged 91- spent the last 3/4 yrs of his life there although 2 were in covid times. MIL still keeps going (She is a terminator I'm sure!) and lives alone at nearly 90.

Sorry forgot to add -contact your local council and speak to social services for a vulnerable adult. They an do a Financial Assessment and help arrange carers/residential care.

Get your mother a carers assessment from social car.

See if you GP will make a visit and assess your dad - that might help if they will suggest help. You can preempt this visit and ensure your mum is there so that can speak to her too.

Does anyone have Power of Attorney for your father? This can make things easier. Call social work dept and ask for 1) assessment of your father’s needs 2) a carers assessment ( i.e. your mother as if they see she is struggling they will take this in to consideration with what they offer to support your father). Are you in contact with your local old age psychiatry service or Gp regarding your father’s diagnosis and management? I would let them know of the situation both in terms of signposting to local services and also considering whether medication might be or use. The Alzheimers society is a good resource for general information and support x

Do they want care at home for now?

I'm a carer and sometimes it's best just to kind of get on with it. Have the carer go in however many times a day. Even if they do nothing beyond having a cup of tea and a chat. Become someone familiar. Usually reluctance is due to a combination of fear and embarrassment. You need someone to break the ice and be completely matter of fact about it. It doesn't work for everyone but I've known a lot of very reluctant service who have come round with this approach

Thank you everyone for these suggestions. I'll try to speak to social services on Monday. I'm concerned that they're happy to offload responsibility on to DM as DF has in his confusion repeatedly called out ambulances and the police who come out realise there is no issue and then refer to Social Services but there is never any follow up. He has also called his GP practice so many times that they've written to him threatening to remove him from their list rather than arranging further care. Either way I'll try and see if I can get them to visit him again and assess DM too.

@Dobbysgotthesocks

"Have the carer go in however many times a day. Even if they do nothing beyond having a cup of tea and a chat. Become someone familiar."

This is exactly what I have suggested to DM but she refuses to do it as DF says no. I think she needs someone with authority to tell her it's necessary otherwise she'll think she's failing him somehow.

Could your mum be persuaded that whilst he might be saying no now, he would get used to it eventually if done as per Dobby's suggestion of cup of tea. Whereas if it gets left to the point that neither of them can cope without it will end up much more distressing for him. Sell it as a kindness to get the ball rolling asap - a way of saving him from a big upset down the road.

Oh and to add, there is no power of attorney for DF as he refused to set one up when able and still refuses now as he won't acknowledge that he has dementia. He recently tried to make some completely out of character large financial gifts to relative strangers and DM felt obliged to carry out his wishes (they have joint accounts but he can't now handle the admin) and had to be strongly persuaded not to.

Does she accept that he has dementia and therefore his decision-making is flawed? You could maybe frame it as being her wifely duty (!) to make sure that he is safe and properly looked after, even if that means doing things that he doesn't like. It is not safe for an elderly person to be sole carer to someone with incontinence and other issues, not for the person being cared for or for the carer.

Have you had the conversation about what would happen if she was ill/injured/died or was otherwise unable to look after him? It is better if he starts being forced to accept other carers sooner rather than later - easier for them to be introduced gradually as a previous poster suggested, rather than it being a sudden imposition in an emergency.

To be honest from your description it sounds like he may soon be in need of a move to residential care rather than clinging on at home, but social services will always try to keep people at home with visiting carers for as long as possible (cost reasons).

Also, if money is an issue, you should look into attendance allowance and carer's allowance, which might help a bit.

She accepts he has dementia (he often forgets who she is) but is so habituated to doing what he says that she can't really break out of it. I also think that until recently he occasionally had relatively lucid periods and she wouldn't want to disobey his wishes if made during one of those.

maybe she should tell him she is standing the care for herself to help out with stuff as she is finding it hard and then when they are in the house, suggest they help both of them or help him with a wash whilst she gets herself sorted. He might adversity it if she pretends it is for her, or for both of them. Shree needs to be honest with him that she cannot cope. If he sees her upset, he might remember that. Very hard though.

It's awful but you have to be so pushy
My dad was begging for help and they were still talking about 15 min care slots assessment by last month - at which point she needed FT care
Luckily I managed to intercept when she went into hospital and said she can't come home and had to be really firm on it
The nights were the worst and there was no home care available overnight

Try and get you DM to give you POA for her, then you can at least help with the joint assets, maybe put them in an account that requires both your and her signatures?

@SeaToSki

"Try and get you DM to give you POA for her" thank you for this idea, I'll look into it. DM has been close to carrying out financial requests of DF which would put her own financial situation in real peril.

Also, reading through the replies it seems to be that the quickest way to get social services involved is to refuse to have DF back next time he's admitted to hospital. I can't see DM agreeing to this but I will speak to her. Thank you everyone for sharing your experiences.

Maybe speak to the Alzheimer's Charity for some advice. This is so difficult your DM is in a impossible position.

I can't see any way round it, other than your DM saying clearly and repeatedly that she can no longer provide care. SS will continue to take her at her word if she keeps saying she can.

FIL found it very hard (for different reasons) to say that he couldn't care properly for MIL. He was just rubbish at it - didn't seem to notice that she was not washing or toileting properly, kept leaving her to dress herself (DH turned up once and she had a cardigan wrapped round her waist as a skirt - FIL said he'd told her to go and get changed and seemed bemused that she hadn't done so 🙄). He'd give her her medicine and expect her to take it, and wouldn't check, then he'd find a stash of pills hidden in a hankie, and he didn't think it really mattered. SIL was run ragged trying to keep up with the domestic side of things - to which he was oblivious.

But he was determined to keep her at home as that's what she said she wanted when she was asked.

In the end DH and SIL coached him to say that he couldn't have her home from hospital as he couldn't keep her safe, he couldn't provide the care that she needed at home. And they jointly stuck to that line when SS wanted to send her home (with osteoporosis, immobile, doubly incontinent, Parkinsons and dementia) with daily carers. She went into a nursing home. However, if FIL had cracked at any point and said he'd have her home, SS would have jumped at it. Even now he doesn't get it - still talks about bringing her home with no thought of the reality of it. In the home she has company, assistance, is fed and kept clean, takes her medication properly. She's far better cared for there.

Anyway, maybe you could take this tack with your mum? That your father is simply not safe at home with just her? That in doing what he says, she's actually doing him a disservice - even if he doesn't see it that way.