Partner not dealing well with my father's dementia

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 ?

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.

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.

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.

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.

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?

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

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.

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.

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.

Hithere

OP

Do you like his partner?
Did she treat him well?
It must be heartbreaking for her to see her partner sick
It doesnt matter what age she is - she is not obliged to care for her partner the way you consider fit

I have a suggestion for you- your father can move in with you and you handle all carers, become a carer yourself
Take over his care and you have more decision making power about it

I think you’re being a bit harsh here. The OP may not be in a position to have her father living at home with her, or to become a full time carer herself, and I didn’t see any evidence in her original post that she was in any way trying to force the partner to care for her dad. She’s just trying to navigate her way through the minefield that is social care and was posting for advice and support, not to be sniped at because people are reading things into her posts that really aren’t there. Some animosity towards her dads’ partner is probably natural - after all she’s lived with him for twenty years and now seemingly wants him to go straight into a care home, when this isn’t necessarily the best or most appropriate option for him. A bit of compassion wouldn’t go amiss.

* OP
How do you know he manages well by himself now?

There have been threads where the reality didn't match the perception of the poster.*

This is a fair point because if you don’t live the the person you can end up with a disjointed view of how well they manage and how safe they are in their home environment.

However, it’s also not a case of just getting power of attorney and putting them into full time care - there are lots of options in between and a social services occupational therapist will liaise with the GP to assess the severity of the condition and advise an appropriate care package. When we were sorting mum out after her diagnosis, the OT advised that the first thing they look at is whether it’s possible to keep the person in their own home, as people generally do better in the home environment. They looked at the help available from family members and advised as to the aids and adaptations necessary to help mum move around and live comfortably and safely at home, and also advised the different care packages available as her condition deteriorated. The consensus was that mum’s condition didn’t warrant a full time care home at the time, and the focus was on a flexible care plan and adapting her home environment to suit her needs for as long as possible. They also arranged for mum to have weekly supervised visits to our local community centre, to socialise with other people and engage in various activities. These were stopped during the pandemic, but are slowly being reintroduced, and for us they were invaluable as they gave us some breathing space knowing that mum was cared for.

All of this was done with mums’ input and I think this is where people who don’t have first hand experience of dementia tend to leap to the conclusion that full time care is the only option. Dementia comes on very slowly, and depending on the type, it affects people in different ways - and it doesn’t automatically mean that the person doesn’t have the capacity to make their own decisions. They may have different levels of capacity at different times. As mums’ LPA every decision I make has to be in her best interests and I have to involve her in decisions made on her behalf if she has the capacity to understand at the time that decision is made.

I think the OP genuinely has her fathers’ best interests at heart and hopefully she’ll get the help she needs from the various authorities and charities. I found Dementia UK to be very supportive to both mum and ourselves - they gave us some insight into the condition and suggested some coping strategies, as well as advising on the various pathways the different types of dementia take.

winterwhite

No one can really advise without knowing the partner's perspective on this. 20 years is a long time - longer than many marriages last - and I think she is being judged too harshly.

I agree. If anyone is critical of anyone declining to be or continuing to be a full time carer for a person with dementia then maybe they should try it themselves for a month and see how they feel then. Although the diagnosis may have been made only recently, there could have been ongoing issues with it for years, that may not have been visible to everyone.
Its fortunate in this case that there is some funding available via the sale of the property if necessary to secure a good standard of care, so OPs father should be well cared for, whatever is decided. He and his partner and the rest of the family can then hopefully continue to enjoy what remains of their time together via visits without the onus of having to take on the care responsibilities.

No one can really advise without knowing the partner's perspective on this. 20 years is a long time - longer than many marriages last - and I think she is being judged too harshly.

She is now saying she can’t cope with the situation and doesn’t want to be the carer even if I try to arrange a carer to come in when she’s out so my Dad doesn’t get anxious.

So you actually want the partner to be carer all the time with no help?
I think she's quite right to say she's not prepared to take that on.
It can be horrendous for a carer/partner as dementia worsens.

Does your father have a view on your plan to ask his partner to leave?

Could sheltered housing be an option, rather than a home?

OP

Do you like his partner?
Did she treat him well?
It must be heartbreaking for her to see her partner sick
It doesnt matter what age she is - she is not obliged to care for her partner the way you consider fit

I have a suggestion for you- your father can move in with you and you handle all carers, become a carer yourself
Take over his care and you have more decision making power about it

icanhandthemback

^At this stage my Dad is not being packed off to a home.^

With this sentence you have denigrated everyone who has been forced to make this decision. Until you have tried to care for someone with Dementia from a distance you will hold this view of people putting their parents into a safe environment. I made the exact promise to my mother about keeping her in her own home. How naive was I! And I only live a couple of doors away from her!

Maybe the wrong wording but I essentially agree. We’re very lucky in that mum lived with us for over twenty years before the dementia was diagnosed, so for us it wasn’t a difficult decision that she stay at home. I realise not everyone can do this, but I’m surprised by the number of people on threads like these who think a diagnosis of dementia automatically means entry into full time care. I don’t think the OP was intentionally denigrating anyone - I think her words are probably coloured by seeing her dad abandoned to his fate by the partner who has been happy to share his home for twenty years, but isn’t so keen on being his carer when he needs 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.

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.

At this stage my Dad is not being packed off to a home.

With this sentence you have denigrated everyone who has been forced to make this decision. Until you have tried to care for someone with Dementia from a distance you will hold this view of people putting their parents into a safe environment. I made the exact promise to my mother about keeping her in her own home. How naive was I! And I only live a couple of doors away from her!

Just as a matter of interest, how old is your dad’s partner?

If she is quite old as well, she might not feel able to care for him.

If younger……

OP
How do you know he manages well by himself now?

There have been threads where the reality didn't match the perception of the poster.

Thankyou all for your messages, I’m so glad the majority of you think the same way as me. I’ve promised my Dad he’ll stay at home no matter what as long as I can sort care as I don’t live locally. I understand the pressure his partner is under, but …. At least the LPA will be granted soon and at least then I can find out if there’s money available for care and the Doctors and Social can speak to me. At this stage my Dad is not being packed off to a home.

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.

Before you ask the partner to leave, check what effect it would have on any fees. As I understand it, if a partner remains in the home, the property does not have to be sold if your father goes into a home.

Yes it’s as well to check. If the OP’s father is sole owner the property would be considered as a whole in the financial assessment. If his partner wanted to remain in the home after he goes into care the LA would have to agree to a deferred payment agreement. Father or his LPA would have to sign an agreement to pay the fees when the property is eventually sold. However, the LA has to consider all circumstances so if Fathers’ partner has her own property they may not consider it reasonable for her to remain in the home and so may not agree to a deferred payment arrangement.

Also worth considering is that the earlier he goes into care, the more of his homes’ value will be eaten up in fees and if he lives a long time, he may find that he runs out of funding and has to be reassessed. So it’s worth checking if the care home chosen would be covered by LA funding when his funding pot is exhausted - if not he may have to move to a cheaper home. It’s a minefield and you need proper advice before making any move - I would think the first thing you need to do is to talk to your local authority and take it from there.

I have just been through this with my mother, who was cared for by her partner for 5 or more years with Dementia before he just couldn't do it any longer. Before you ask the partner to leave, check what effect it would have on any fees. As I understand it, if a partner remains in the home, the property does not have to be sold if your father goes into a home.
My experience of relying on carers is that unless you use an agency (very expensive) you will find there are times you have nobody in place because of sickness, holiday, etc, etc. You can have a live in carer but they generally have a rolling programme so they change regularly.
It may well be that, as hard as it is, a home may be the best thing for your Dad. The Dementia can be be very wearing for anybody looking after the sufferer so a well staffed home spreads the load. You will have the reassurance that your father will be cared for at all times if you do your research and find the right situation for him.
In the partner's defence, Dementia comes on very slowly and diagnosis is usually only done after a partner has done quite a lot of caring or struggling already.