Partner not dealing well with my father's dementia

I am also imagining how it might feel to be the partner who has lived with and presumably helped look after the father for all these years — as someone's pointed out upthread, 20 years is longer than a great many marriages — and is now seeing the daughter (who lives at a distance, doesn't see her father very often and has apparently expected the partner to cope with 24/7 care and rarely be able to go out) file the LPA and take everything over. What a horrible position for the partner to be in. All the drudge work, none of the decision-making power.

Pammie1

icanhandthemback

Also worth considering is that the earlier he goes into care, the more of his homes’ value will be eaten up in fees

You'll find the same though if you are paying out for care in the home. For 24 hour care, you won't pay much less than care home fees.

That’s incorrect. For home care, the home the patient lives in is not included in the local authority financial assessment. They will include any savings above the limit, income and any benefits the patient receives. A relative of ours has recently entered a care home which specialises in dementia care and the fees are in excess of £4000 a month. Her fees for LA home care were around £600 a month. Big difference. A lot of people also don’t realise that self funders are charged around £1000 a month more than those on LA funding - essentially a levy to help fund those who can’t pay themselves.

As I said in an earlier post, best to get professional advice to see what the rules are; they are often applied somewhat differently or to different levels depending on area and it is almost impossible to get CHC funding.
I would be very surprised if you could get 24 hour care from the LA in the first place; their assessments are very different to what the patient actually needs. I have priced it up and there was very little difference to the care at home and care within a home but I am talking about 24 hour care not someone coming in and out for a couple of hours a day, relying on alarms to prompt a dementia patient, etc.

We can all judge but, none of us know the full facts. My mum had Alzheimer’s. My dad shielded her initially and then would only accept help from family. Eventually this wasn’t enough and other solutions had to be found. It certainly wasn’t easy, and it wasn’t an easy decision when she finally was cared for in a specialised unit. That, also, couldn’t cope and she ended her life in a wonderfully caring setting funded by the NHS, but how we would have loved for her to be cared for by us. My dad’s death actually preceded hers. The first decision here is for the partner. She has a life to live and may have problems of her own. She does have a choice of whether or not to stay and support and if they still care for each other, I’m sure they will work something out that brings them both comfort

Pammiel
My compassion is for her partner, who seems to be taken for granted and ready to be discarded as she doesnt fulfill what OP wants

Where is the compassion for her?

Without knowing the ages of all concerned, the level of dementia and the physical fitness of his partner, it’s really difficult to judge.

This is very, very true. There are various levels of care but as Dad gets anxious when the partner is out, I took it that he would need 24 hour support. We considered warden assisted, etc but for us it wasn't an option. The trouble with dementia seems to be just as you resolve one problem, another occurs. We have found somewhere which is not specifically for Dementia and allows us to visit whenever we wish and we still take Mum out for full days. She most certainly hasn't been packed off anywhere.

Yes, my MiL had to go from one (good) care home that coped when she was mildly confused to another that was more focussed on dementia patients (not a good experience: staff were awful). We got her out of there after a few weeks (and whistleblew and the place was shut down) and into somewhere better, and from there into a specialist dementia unit. It did, as you say, feel as if as soon as she'd settled in somewhere we had to start planning for the next place she'd need to move to.

I don’t know whether you’ve ever been there, Awesomegranny, but believe me, dementia can be unbelievably stressful to live with. My FiL (who I was extremely fond of) developed vascular dementia in his 80s, and we took him to live with us, blithely thinking, ‘Just getting a bit more forgetful - how hard can that be?’

My goodness, it wasn’t long before we found out. Within a year he was in a care home - 95% of it had fallen on me and I was at breaking point.

So I don’t think it unreasonable of the partner not to want to take on full time carer duties, but nor do I think the arrangement you suggest is at all unreasonable, either. However, given that her own property is rented out, she is highly unlikely to be able to move back at short notice.

Please be aware that live-in care can work out even more expensive than a nice care home - we looked into it once for an aunt of dh - especially if a carer is likely to have frequent broken nights, and/or the person is no longer safe to be left alone at all -not uncommon with dementia. In such cases there would need to be 2 or 3 on shifts, to allow for enough sleep and breaks/time off.
Plus you have all the costs of running a house, food etc. on top.

icanhandthemback

Pammie1

icanhandthemback

Also worth considering is that the earlier he goes into care, the more of his homes’ value will be eaten up in fees

You'll find the same though if you are paying out for care in the home. For 24 hour care, you won't pay much less than care home fees.

That’s incorrect. For home care, the home the patient lives in is not included in the local authority financial assessment. They will include any savings above the limit, income and any benefits the patient receives. A relative of ours has recently entered a care home which specialises in dementia care and the fees are in excess of £4000 a month. Her fees for LA home care were around £600 a month. Big difference. A lot of people also don’t realise that self funders are charged around £1000 a month more than those on LA funding - essentially a levy to help fund those who can’t pay themselves.

As I said in an earlier post, best to get professional advice to see what the rules are; they are often applied somewhat differently or to different levels depending on area and it is almost impossible to get CHC funding.
I would be very surprised if you could get 24 hour care from the LA in the first place; their assessments are very different to what the patient actually needs. I have priced it up and there was very little difference to the care at home and care within a home but I am talking about 24 hour care not someone coming in and out for a couple of hours a day, relying on alarms to prompt a dementia patient, etc.

But you’re talking about 24 hour private care - I’m talking about local authority care at home, which does not take the property in which the person is living into account - you’re jumping to the most expensive option when there hasn’t even been an assessment of the fathers’ needs.

Hithere

Pammiel
My compassion is for her partner, who seems to be taken for granted and ready to be discarded as she doesnt fulfill what OP wants

Where is the compassion for her?

Agreed up to a point, but as the father is the one who actually has dementia his needs come first and he is the one who will have his life disrupted if he has to go into full time care. His partner has lived in his home for twenty years and benefited from being able to rent out her own home for an income. For her to even suggest he goes into full time care in a home, without exploring the other options available isn’t exactly showing much compassion either is it ? And some on here seem to be suggesting she should be allowed to stay in his home after he goes into care - this will entail fees and interest on the debt accrued, meaning that more of his care funding pot is eaten up. How is that fair ?

MargotLedbetter

Nanna58

I do understand your feelings but as the spouse of someone with Alzheimer’s would just say this- it is very different dealing with this situation 24/7 than being a relative who can , if even for short periods , walk away. Just saying.....

Yes. I find the comment about the partner 'having shown her true colours' really offensive. My mild, clever, funny and loving uncle had vascular dementia and went through periods of being extremely angry and depressed and took it out on my aunt when no one was around to see. It was only when he broke her arm that she received assistance.

I grew up living with a grandmother whose Alzheimers cast a dark shadow over my childhood and ran my mum ragged. I would never condemn anyone for deciding they couldn't cope and bailing out. I wouldn't want to put anyone I cared about through it.

That was my comment and it wasn’t meant to be offensive. It was meant in the context that the partner has gone immediately to the best option for herself - full time care for her partner - which is not necessarily the best option for him, depending on how severely his is affected. The compassion here seems to be mostly for the partner, which to my mind isn’t right. No-one is forcing her to do anything she doesn’t want to do and she’s in the fortunate position of having her own property to move back to if and when it becomes necessary. There seems to be an assumption that the OP is resentful. I don’t think this is the case - I think she’s just trying to do her best for her dad.

But you’re talking about 24 hour private care - I’m talking about local authority care at home, which does not take the property in which the person is living into account - you’re jumping to the most expensive option when there hasn’t even been an assessment of the fathers’ needs.

Only because the OP said her father was anxious when the Partner was not around. If the Partner is not going to be around 24/7, then if the father is not going to be anxious, he'll need someone around all the time. Also, purely from a deterioration point of view, the mind keeps better if it is stimulated. Long periods of time on your own can actually compound dementia.

MargotLedbetter

I am also imagining how it might feel to be the partner who has lived with and presumably helped look after the father for all these years — as someone's pointed out upthread, 20 years is longer than a great many marriages — and is now seeing the daughter (who lives at a distance, doesn't see her father very often and has apparently expected the partner to cope with 24/7 care and rarely be able to go out) file the LPA and take everything over. What a horrible position for the partner to be in. All the drudge work, none of the decision-making power.

Where is the evidence for this ? The OP says the diagnosis was recent and that his partner is the one who is saying she can’t cope and doesn’t want to be the carer. The OP isn’t forcing her to do anything, she’s looking out for her father. And if someone is diagnosed with dementia an LPA is essential before they lose capacity, so that their affairs can be managed. Since the partner is not next of kin, and the daughter is, I would have thought this was the obvious choice - or would you rather the LPA was awarded to someone who has already said they don’t want to be involved with the fathers’ care ?

It was meant in the context that the partner has gone immediately to the best option for herself

But she's lived with her partner for 20 years and as anyone who's ever lived with anyone with dementia will tell you, by the time the sufferer has reached the stage where they can't be left (which it sounds as if he's reached) they've very probably been deteriorating for years. It's likely that the diagnosis has just confirmed what she's know for some ages. So far from this being an immediate decision, as you suggest, she's likely had years supporting him — and through lockdown and Covid, too, when it was so difficult to get help. I can't think of any carers I know who haven't been left traumatised by the isolation of lockdown.

No idea how old the partner is and I don't think the OP has said, but she could be quite elderly herself. No matter her age, if she's had enough, she's had enough. Perhaps she needs a month or two respite so that she can make a decision away from her caring responsibilities. Constant care wears you down.

I imagine there are all sorts of things playing out in the background. We don't know whether the partner is the Other Woman: we don't know whether she and the OP have ever got on. We don't know whether she's been a great carer for the father or not. If she has, I'd suggest that she could be a fantastic asset and that maybe she needs to be appreciated and encouraged — because she's going to cost a a fortune in care costs to replace.

Pammie1

MargotLedbetter

I am also imagining how it might feel to be the partner who has lived with and presumably helped look after the father for all these years — as someone's pointed out upthread, 20 years is longer than a great many marriages — and is now seeing the daughter (who lives at a distance, doesn't see her father very often and has apparently expected the partner to cope with 24/7 care and rarely be able to go out) file the LPA and take everything over. What a horrible position for the partner to be in. All the drudge work, none of the decision-making power.

Where is the evidence for this ? The OP says the diagnosis was recent and that his partner is the one who is saying she can’t cope and doesn’t want to be the carer. The OP isn’t forcing her to do anything, she’s looking out for her father. And if someone is diagnosed with dementia an LPA is essential before they lose capacity, so that their affairs can be managed. Since the partner is not next of kin, and the daughter is, I would have thought this was the obvious choice - or would you rather the LPA was awarded to someone who has already said they don’t want to be involved with the fathers’ care ?

Although the diagnosis was recent, he will have been showing signs/ deteriorating for some time and the partner will have been dealing with it. I think I posted early on about vascular dementia sometimes leaving sufferers volatile. In my uncle's case people had been commenting on the change to his personality for years before he was diagnosed.

I know from my husband's situation how difficult things can get when one person is the main carer but another holds the LPA. My husband was his mother's favourite and the one she called on constantly for support, but the LPA was in his older brother's name and big brother liked to remind my DH of that in petty and infuriating ways. He may have been managing their mother's affairs but he often did so in ways that cut my husband and the other siblings out of the decision-making process. Similarly in the OP's case, one party has all the legal standing and power, the other has been shouldering the responsibility of care. It can be an uncomfortable way of working.

You identify that the partner has no legal standing and also presumably no security of tenure in the home she's lived in for 20 years. Perhaps the partner has stayed with the father so far out of a sense of duty, love and commitment but I can perfectly well understand why she's called time on it. I imagine there have been conversations with doctors where they've discussed how things are likely to develop. Perhaps she's frightened or overwhelmed and that's informed her decision.

I don't know about other parts of the country but anyone here (Hampshire) expecting the LA to fork out for 24-hour home care has no idea.

Sorry, two mammoth posts. I will shut up now!

I don't know about other parts of the country but anyone here (Hampshire) expecting the LA to fork out for 24-hour home care has no idea.

MargotLedbetter, you are absolutely right. They will offer ways you can get round things without having care first with no understanding of dementia sufferers finding it hard to take on board new technology. When my mother was continually falling, she just didn't remember that the button on the wrist was to press for help. She could lay on the floor for hours and did as her partner/Carer was deaf once his hearing aids were out at night. Neither did she have any idea that the control centre was talking to her if she pressed it by accident.
Needs help taking tablets? Set an alarm. Erm, she can't work out what the alarm is for or how to turn it off! And yet, if you had a conversation with her she would look as if she understood (probably did at the time) and so the assessors went away happy despite what we said.

HI, just a thought - does " common law husband/wife" still have any legal standing? If it does then the partner may very well have some legal rights. As previously mentioned by others, the whole position needs to be run past experts before any decisions are made regarding who is entitled to what and who is responsible for what. The father may also have left a will favouring his partner.

There is no such thing as a common law husband or wife.
It’s one of those myths.

No. I believe in Australia living together over a certain length of time does confer some legal rights, but if you're not married or civilly partnered then you have no automatic right to anything as far as I'm aware.

This is a really tricky situation and we only know one person’s version.

A friend of mine has a husband with dementia following a stroke. She contacted Adult Social Care to see what help might be available eg respite care, and the only suggestion they came up with was that she should do some voluntary work, to get out of the house. How was that supposed to help, when he can’t be left alone?
So there is another side to this situation and it is not for us to be judgemental.

Georgesgran

There is no such thing as a common law husband or wife.
It’s one of those myths.

HI, I don't think it is a myth in every case, I've lifted this from a random Solicitors website: Cohabitation Rights in Scotland
"Many couples live together but are not married or in a civil partnership. While they do not have the same clear rights as married couples or civil partners, cohabiting couples can be recognised under Scots Law in some circumstances. You can also have a legal agreement recognising your relationship drawn up to cover potential problems.

Section 25 of the Family Law (Scotland) Act 2006 gives pointers as to what the court is to look at when deciding if there is cohabitation for the purposes of the Act. These are the:

Length of time the parties have been living together
Nature of their relationship during that time, and
Nature and extent of any financial arrangements in place during that time

It is irrelevant if one or other of the cohabitants happens to be married to somebody else."

I appreciate that it quotes Scots Law and I don't know where the family in question on this thread reside, but it may be that partners in long term residential relationships do acquire some rights in countries outside Scotland, and as I mentioned earlier, the father may already have made her the main beneficiary in his will.

So, even more need to take professional advice.

I priced up full time live in care for my mum about three years ago and it was more expensive than a care home! As mum wandered around the house, the carer would have been woken up and that added a huge amount to the costs. It might have meant having an additional Carer for the night hours so the daytime Carer could sleep. I also had to factor in extra care for two hours each afternoon when the Carer was entitled to a break.

As mum was self funding, I never managed to get an assessment of her needs, she was never assigned a social worker despite several phone calls from me. I managed to find out that the first level of care offered to funded people was two care calls a day, for half an hour each, is 23 hours with no support. Then an upgrade possibly to four half hour visits for meals and medication support before a care home would be considered.

However, in time it became unsafe for mum to live alone at home due to her aggression to me and two carers who I employed at weekends so I could have a break and her habit of going outside at night partially dressed. I lived close to mum as did my brother and sister so we were able to be with mum every day, I don’t know how I would have managed if I lived away. That’s when I reluctantly agreed to consider a care home, mum had lived independently for 5 years ( with increasing support admittedly) after diagnosis and for 2 more years in her lovely care home.

I certainly did not pack her off to a care home as soon as she was diagnosed. I took early retirement to look after mum and my sister eventually took voluntary redundancy to be her Carer for 20 hours a week. But once she no longer had any capacity to make safe decisions and had several falls, I knew it was time for 24 hour care by a team of carers.

The original poster has a great deal to think about and look into the practicalities of caring for her father from a distance, with or without his partner being there, it will be challenging.

Maybe you could go and stay with your dad for a couple of weeks while his partner goes away for a break, then you will see exactly what support your dad needs and can get some put in place.

She should give notice to the renters of her property and move out of your fathers house and back to her own! She doesn't want to be left with him does she....she doesn't love him then.

lemsip

She should give notice to the renters of her property and move out of your fathers house and back to her own! She doesn't want to be left with him does she....she doesn't love him then.

I'm not sure how anyone here could possibly know that the partner doesn't love OPs father. She could have moved out at any point over the last 20 years if she had wanted to. Staying for 20 years seems to me to indicate some level of affection at the very least.

lemsip - how do you know she doesn't love him?

Since the partner is not next of kin, and the daughter is, I would have thought this was the obvious choice - or would you rather the LPA was awarded to someone who has already said they don’t want to be involved with the fathers’ care ?

The father has to be in sound enough mind to agree to the LPA so he is also able to decide who will have responsibility for it.
If he wants it to be the partner, it is up to her whether she agrees.

The father can also designate who is next of kin for his health and care. It doesn't have to be an actual relative.