Partner not dealing well with my father's dementia

That’s what I’d be doing, yes. I’m so sorry you’re going through this - my mum is 91 and is in the later stages of vascular dementia so I feel your pain. If your father went into care he would likely have to sell his home to pay for it, so his partner would have to move back to her own place anyway - if they’re not married and your father owns the whole property, given that she has her own home, she would have no claim on it even if he willed it to her. His care fees would take priority.

My mum lives with my partner in our home and even though she’s in the later stages of dementia, she still manages her own personal care - I do her washing and ironing and make sure she has clean clothes and a clean bed/bedroom. She just needs supervision when moving about and she’s starting to be a fall risk outside. She’s no trouble and sits watching TV and listens to the radio mostly.

I know dementia affects people differently but it does seem a bit heartless for his partner to suggest a care home so early on and now she’s shown her true nature I would be wary of leaving her to care for him anyway. And given that the care system is in such chaos, I would have thought that social services would be more inclined towards arranging care in his own home - he’s still mobile and coping with personal care and he obviously has family who care about him.

If it’s possible talk to your father about arranging care at home and take it from there. I would also think about arranging for for someone in the family to obtainLasting Power of Attorney for your fathers so that his best interests are the priority - you can still do this even after a diagnosis of dementia, providing your father still has the capacity to understand what it means. It’s easy to do and all the necessary information is online - just look under Office of the Public Guardian and that will explain everything. I wish you well.

I agree with the above. I can understand someone not wanting to be a full time carer but a care home isn’t the best place for your father at the moment.

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.....

OP,

How often do see tour garhet?

I am asking because she lives with him 24/7 and a disease like is very stressful and currently impacting her.

Talk to your father and ask what he wants to do

Your father, sorry

You are your fathers daughter and have every right to make decisions. He is managing his personal care so it does seem premature to be thinking about a care home , although that time may come in the future. For now you must act in the best interest of your father. If his partner can not cope she must go to her own home. Lasting power of attorney is a sound idea, with you holding power of course - not his partner!! It is not unreasonable of you to get carers in and ask her to move out. She has made it very clear she is not prepared to care for him so she knows where the door is !

I'm so sorry to hear of your Father's recent diagnosis and the fact that his partner has decided she doesn't want to be his carer.
Yes, caring for someone with any degree of dementia can be awful, yet I wonder how she'd feel if she learned that someone would react in the same way towards her in that same situation!

After 20 years and when he really needs her, she's made her decision - she's said she's not going to care for him, therefore SHE now needs to step back from that and move back to her own home; perhaps taking up the role of occasional visiting friend, or not. Sadly he's not the one blessed with any choices, but he's certainly not the one who should be moving anywhere and out of his own home, until you're all good and ready and feel the time has come when it's absolutely necessary for his care and safety.

I agree totally with all that Pammie has said.

Social Services, even 5 years ago when I was dealing with my Mum's care, was a total nightmare. They could not have been more disorganised or under pressure. But if you're willing to be pro-active and set about making arrangements for your Father's care this will undoubtedly be of great benefit. Do speak to his GP about this, (as well as Adult Social Care in your area, and any local Dementia organisations) so you can be sure he's on their records as being in need of care; and will be assessed with regard to what sort of care may be funded and available, what sort of aids etc., (if any) an Occupational Therapist would recommend to be installed at home to make his life more comfortable, and to ensure that he will be properly looked after and not at risk.
Your own input and in regard to visiting, supervising or co-ordinating help, meals, shopping etc., for him will be invaluable and, hopefully, you will soon be able to put a plan into action involving those who are willing to make his life comfortable, and relieve the obvious concerns you will have now. You've doubtless got lots of decisions and tasks to be sorted, but I'm sure you'll get there and ensure that your Father's final years are as happy as you can make them.

Gosh. This is something that has been on my mind recently, especially since a close friend of mine has developed dementia. My marriage ended over twenty years ago ( he left me for someone else who then left him). We’re both in relationships with other people. Although DH and I have been together a long time now I regard it more as a relationship built on shared interests and companionship. We haven’t had children together and built a life together from an early age. If I needed to I feel that I would/could look after the man who was my husband for thirty years but not my current partner. Yes, if he became ill I would care for and support him but I don’t think I could cope with dementia and all that it entails. And I wouldn’t expect it of him, either. I know that sounds awful but I’m just trying to be honest.

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.

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.

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.

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.

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.

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……

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!

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.

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.

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

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?

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.

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.

* 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.

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.

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.