Leaving a partner with dementia

[Pamtechnicon]

I grew up with dementia: my demented DGM lived with us for years when I was at primary school. Even as a young child I saw how torn and exhausted my DM was, trying to hold everything together and look after our mad granny and her tendency to wander the street in a state of undress or set light to things. In retrospect I can see that me and my siblings were left pretty much to bring ourselves up much of the time while DM tried to look after her DM. Not knocking it, it made us independent, but not ideal.

Life went on. My DP and I met in our 40s and have been together 21 years. It became clear after the first couple of years together that his parents' were declining into confusion and dementia. Our lives became dominated by the need to keep an eye on them and sort their issues out. Whenever we booked to go abroad one or other of them would have a crisis: go missing, have a heart attack, set the kitchen alight, get locked out... DP's DF died first and he wanted his DM to live with us. I said no. She was doubly incontinent and I knew I'd be expected to do all the intimate care and domestic work. Instead I supported him to support her and the family finally agreed that they'd have to pay for a care home. I know you're not supposed to say it but it was a huge relief when she died. I think we both felt as if we'd got our lives back and we had a few really good years.

My partner was offered an early retirement deal in 2019, when he was 63. I was in a position to give up work too. The plan was for us to have a few years travelling and exploring the world free of parental care. Then Covid came along. He seemed to suffer quite badly, being a sociable sort of person. He began to struggle with Zoom and FaceTime: he couldn't remember names and sometimes didn't recognise people. This year it's been noticeable that he tells the same stories again and again and people are beginning to let him know they've heard it before.

Several people have asked me whether he's seen a doctor for tests. No one's mentioned dementia but that's what we're all thinking. He can't remember our dog's name and calls it by the name of a dog he had before I knew him. He gets agitated and confused and shouty over things he has taken in his stride all his life.

He had to go to hospital for an X-ray a couple of weeks ago and because of Covid I couldn't go in with him. It seems he got lost and ended up in a behind-the-scenes service area. He was quite defensive, apparently, when staff tried to help him. One of them phoned me and asked me to go in and help calm him. They thought he had MH issues but when I told them my suspicions they said ah, right, that made sense. When we got home I had a talk with him and told him what I thought was going on and of course he denied it all and was furious and upset and yelled at me and told me I'm the one who's losing it. He's never shouted at me before and it was a taste of how the future is going to be, and I don't want it.

I've talked to our GP who said he'd call DP in for a follow-up on the hospital procedure and assess him when he's there, but the GPs are rushed off their feet trying to cope with more pressing things. I will push but I don't expect much. I'm also trying to prevent DP from driving: I've seen him having little blank moments and it terrifies me.

I really, really don't want to lose another decade of my life to dementia. I want a last bit of independence before I get too old to enjoy spending days exploring foreign cities or walking long-distance footpaths or exploring Europe in a camper van — all things we'd planned to do together but are now out of the question. None of his siblings wanted to be involved looking after their parents. I can't see much help coming from them. DP has an adult DS who's been in the US for the last few years and isn't the type to help.

I'm beginning to feel increasingly certain that I want to get out. I have full-time work for the foreseeable future and enough money and pension coming to mean it'll be possible for me to live relatively comfortably independently. But what kind of partner walks out on someone when they most need support? Am I an utter shit to even be thinking about it?

It's been a loving relationship but he would always, whenever the topic of marriage came up, say that he didn't want to marry again because he didn't want to feel tied down. That suited me. I've been totally independent all my life and I didn't want to be tied down either.

We'd agreed that we'd marry if and when one or the other was gravely or terminally ill, mainly to protect financial interests. But neither of us really wanted to do the 'till death do us part' thing. I suppose in theory this gives me a get-out clause. Has anyone else felt this way? Does anyone know anyone who left a partner with dementia or similar?

The only person I can think of is a distant acquaintance who left her partner after he'd had a major motorbike accident that had left him severely brain-damaged. I can remember people calling her selfish for leaving but I didn't blame her.

"None of his siblings wanted to be involved looking after their parents. I can't see much help coming from them. DP has an adult DS who's been in the US for the last few years and isn't the type to help."
So they'd all look to you to shoulder the load. No point even involving them really, it would just be dispiriting for you.

"I'm beginning to feel increasingly certain that I want to get out. I have full-time work for the foreseeable future and enough money and pension coming to mean it'll be possible for me to live relatively comfortably independently. But what kind of partner walks out on someone when they most need support? Am I an utter shit to even be thinking about it?'
Since it's financially viable, I would do it. More to the point, I'd be starting to make the arrangements now, not leaving it until he gets worse. As many have pointed out, if you are there when SS/medical intervention starts, they will try to load all the work and responsibility on to you. They will insist that you become his carer. By separating, by you living independently of him, they cannot do that (well, they'll still try, but even they won't expect you to comply).

As for 'what kind of partner', I would say a sensible one. You know what's coming, you've been there before, you're making decisions based on experience. Indeed, you sensibly put a stop to him moving his mother in with you, as you "knew I'd be expected to do all the intimate care and domestic work". I agree he'd have abdicated it to you. Thank back to that point. He was totally willing then for you to become his mother's carer. Even by you putting a stop to that, your "lives became dominated by the need to keep an eye on them and sort their issues out."

"It's been a loving relationship but he would always, whenever the topic of marriage came up, say that he didn't want to marry again because he didn't want to feel tied down. That suited me. I've been totally independent all my life and I didn't want to be tied down either."
So you're neither of you tied to each other, and that has been a conscious and joint decision. And you are now making the conscious decision to protect yourself and your health and your future by honouring the fact that you both chose not to be tied to the other.

As has been pointed out to others, you're not in an either/or situation. The choice is not between being his carer and running yourself into the ground, and never seeing him ever again. To be honest, I see this as your real decision. The decision to live independently I see as a done deal - the only sensible option. How much contact you and he have afterwards, is the question. It may be that you jointly choose to never see each other. It may be that he insists on that. Whatever. But I would definitely separate sooner rather than later, so that you don't have to be subjected to SS/medical trying to guilt you into being their substitute.

There's a difference between selfishness and self-preservation, and this sounds like the latter. It's sad but I think a life of caring for him would be miserable for both of you, and once you're involved in that it will be very difficult to extricate yourself.

There's no easy solution but you're not a bad person for wanting to live your own life instead of potentially being an unpaid nurse and general dogsbody for someone who is likely to be very difficult to help. I've seen the destructive effect of this on my MIL, totally thankless and she ended up with health problems of her own and on antidepressants (unsurprisingly!) There are qualified professionals who can help him but he'll only be able to - or forced to - access that if you're not there as a cheap and convenient alternative.

I honestly don't know how you'll go about it as it sounds as if he's in denial at the moment but you're not married, he didn't want to be tied down, and you have every right to do what's right for you. Hopefully you can salvage something of the relationship and continue to support him and enjoy experiences together during his good times. But there's no guarantee of that. Honestly though I can't think of anything worse than my partner having to do intimate care etc for me while I gradually deteriorate. I wouldn't want that for him or me. You need to have an open conversation now because if he does have dementia, he'll adapt better at this early stage than he might later on.

And while I wouldn't necessarily expect a spouse to take on care responsibilities (depending on the severity of the illness), I do think there's a real difference between being married to someone for decades and your situation. It doesn't mean you don't love him but it sounds like there is less of a commitment on both sides. There's nothing wrong with that.

I think what I need to do in the shortish term is to find somewhere to live within about a 30-minute drive. I can look in several times a week, organise a grocery delivery etc. But I don't want to be too closely involved because then I'll be sucked back in to more and more hands-on caring.

That's right. Also agree with a PP who said he didn't want to be tied down by marriage - well that works both ways. You didn't vow 'in sickness and in health' (I can hear some married/divorced/widowed people shouting so what ?). He can't now expect the benefits of marriage. Again, sometimes when it comes to the 'crunch' it means nothing.

I get it he's scared but it's actually him that's being selfish. Won't attend a memory clinic etc. He just assumes that you become his carer. Wipe his arse, put up with the soiling of the bed, the furniture etc. Caring for his as if he was a toddler - permanently. The night time wanderings the gibberish talk the vacant facial expression etc etc. Not caring how scared you are. How exhausted you are. That's selfish.

I have no personal experience of caring for a dementia sufferer. I have a parent who had severe depression. Parent became incontinent. Was caught trying to put on previous day's soiled underwear. Woke up in their own bodily fluids every morning. Had to be encouraged into the shower and gently washed every day because of the incontinence.

All sorts of strategies had to be employed to keep them safe. The medical profession were aware and was ultimately admitted to a specialist unit.

What to do if you are worried about someone's driving.

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I feel for you OP

My mum lives separately from my dad (they are married) and is his carer (he has dementia). Before we realised what was wrong with him he was very cruel to her and their marriage - which had never been that happy - fell apart. She was going to divorce him but when he was diagnosed she couldn't go through with it.

How has this worked out for her? It's been pretty tough tbh. Living separately makes it bearable but he resents her for it (no insight at all into why it happened) and it is still a lot of work. He wont (currently) accept personal care but does allow a cleaner and a home help to come in and do meals etc.

Ultimately the choice is yours. Stay, go, or some halfway house. But if you really dont want to go drowning the caring route then it will need to be a clean break. Some will call you selfish but the important thing is that you can live with yourself and your decision. There really isn't a good one.

down the care route - although "drowning" is spooky apt.

You're not selfish.

If it's dementia he won't even know you in a while.

My mum lives with dementia, she had it two years before we had to find 24/7 care for her as we were all falling out over who could do what and how much care we thought she needed.

She had split from her husband a number of years before but they remained on friendly terms. He never believed she had dementia, arguing with her when she was wrong/confused, taking her out places and not keeping an eye on her. He started gaslighting her too, it would have been better for us if he walked away.

I believe if you tell doctors/carers you are a friend rather than partner then they can't force you to do any care for him? But end the relationship now before he's diagnosed, that way any help he needs will be put in place not taking you into consideration.

I hope you're OK

Looking after and making yourself number one priority does not make you selfish. And i can totally see why you would not want to be in a continuous cycle of dementia care. You have to do what is right for you, we are only here but once!

I can understand why you'd leave. None of us know exactly what we'd do.

But you don't seem to have any empathy. There is not one word in your post about how your partner might feel or even survive in practical terms. It's as if you think you ought to feel something but don't and are principally concerned about that side of things in terms of how your reputation could be damaged. The reality of what life would be like for your partner don't seem real to you. It's as if he was only ever an accessory and now he's served his purpose. Regardless of what you go on to you, that can only be chilling.

go on to do

I know someone who did this (they were married). She lived with the early stages for a year or so, she was absolutely not the kind of personality who was able to make a good show of it and she tolerated the changes so badly it was making both their lives miserable (she belittled his abilities as he forgot how to do things, was irritated with him and angry at the situation). It wasn't admirable but that's her character and she didn't have it in her to do things differently.
Fortunately they had the resources to put him in a really really good care home with a lively social scene and fantastic facilities. He is now living there and is happier.
I think the cruellest part is how scary it must feel to know you are heading into dementia and you have been deserted, I think if there was any way you could avoid that you should try. Leave him with some kind of support plan in place or something.
I know when my Nana started her dementia she was most distressed when she had the awareness of what was happening, so awful as there is no comfort to make it better. After some time that self awareness went and though it was still ghastly she was far less distressed. So, incidentally, OP the time he shouted at you might be because he is scared at the moment it doesn't necessarily mean that would be a regular thing going forwards.

Most of the posters putting the boot in won't have personally experienced just how awful and draining it is to care for someone with dementia 24/7.

You've done your time OP, with your DGM and FIL. You don't need to sacrifice every stage of your life to dementia, you can still get out and enjoy your retirement.

You're really not selfish, if you were you'd have packed your bags and left already.

You have first hand experience of the hell that is 24/7 care for someone with diminishing neurological control. Your childhood was affected indirectly by it and you spent a sizeable portion of your adult life helping your partner and his parents through it. I completely understand that you don't want to end your days in the same situation. You deserve a life.

I think your plan to create distance but keeping part of your partner's wider support network is a good compromise. I hope you find something that works for you

One question to ask about caring yourself:

Is what they gain from my care more or less than what I am losing?

I suspect that in the early stages of dementia the person gets a boost from the stability and the personal relationship.

I also suspect that that stage passes earlier than most of us would like to think, and that being hassled by impertinent strangers claiming they're your family in a place they are claiming is your home isn't much fun.

@Supersimkin2

Go.

Setting yourself on fire doesn't put him out.

This. Anyone calling you selfish does not have first hand caring responsibilities of someone with dementia. It can make the gentlest happy soul extremely violent to the point where they may not be safe to be around, and respite care is a scarce post code lottery. I think my poor frail former mother in law had to wait until her husband nearly killed her to get him taken into care.

That said, get the diagnosis before you do anything. Dementia symptoms can be mimicked by other treatable illnesses so whilst based on the family history it's likely, it's not confirmed.

If you were to move out, how confident are you that other people will make sure he gets help? It's finding a balance and I think it could lie where you don't live with it, but know you have done your best to enable health and social services to support him.
You won't be helping him in the long run by covering for him, so you both have to face it and get it investigated so you know what you are dealing with. The fear of it happening, could possibly prevent a different treatable illness from being sorted out.
Any health professional knows that dementia is serious, so your GP will not be 'too busy' to assess him, I'm surprised you suggest that they would be, I think that is your own negativity coming out there and its not reality. What could well happen is miscommunication, so the opportunity to assess him while he is at the doctor's gets missed inadvertently. You can, and should go with him to his appointment to ensure he is assessed ( ring them to arrange this prior).
As you have found, covid rules are not rigid, they do not trump carers needing to be present when someone is vulnerable, pretty much like parents are still able to visit children in hospital, it just needs prior arrangement and organising.It would of been fine for you to have gone with him for his x-ray , that's why they had no hesitation in ringing and calling you in.
You do have some duty I think to ensure others as well as his own safety needs are met, and that includes doing all you can to stop him from driving until you know if it's a treatable cause or not - ultimately, this may require you to inform the DVLA whether he likes it or not.
How bad would it be if he or others got injured or worse, while you knew all along that he is possibly a danger on the road and had the power to prevent it?
You may at some point have to discuss things with his NOK, as someone will have to become his power of attorney, if it is dementia, and that will not necessarily be you, in fact you could step away from that role to avoid getting consumed by it, social services will find an independent advocate for his future affairs if his son does not want you or himself to take on the role.
You can't expect someone with dementia to cope living on their own, it won't work and is high risk to themselves and others, so just moving out before you've informed anyone, would be a poor choice.
I'm sorry this has landed at your door, your instinct understandably will be to run away from it, but do what you can prior to leaving, for him and others. You will feel better about it all in the long run if you do.

If 'selfish' means thinking carefully about what you can and cant cope with and how you want your future to look like, then that just sounds sensible to me. Who else is going to put you first if you dont?
I wouldnt blame you OP.

the time he shouted at you might be because he is scared at the moment it doesn't necessarily mean that would be a regular thing going forwards

Are you for real ?

That's really unfair cloudacious. Of course it's horrible for him but it sounds like he's refusing to do anything to help himself or put her mind at rest. He needs to take some responsibility, if he's competent to do so, which it sounds like he is. The OP isn't planning to dump him by the side of the road but he's the one who's always been insistent on not wanting to be tied down. Yet his behaviour now indicates he's perfectly happy for her to be tied down trying to deal with his health issues without addressing them himself.

To be honest a few years ago I’d be thinking what a horrible person you are.
However my dad passed away recently, my mum spent her life caring for him and although she missed him and was heartbroken she said she was also excited because she’d finally get to live her life. She was diagnosed with cancer two days after his funeral and died less than 5 months later. She didn’t get to do a single thing except lay in a bed surrounded by nurses.

Life is too short to live it for someone else.

I'm fairly experienced with dementia as there's a lot in my family.

My first thought is that you are not married, you both didn't want to make that step of commitment to each other.
Therefore I think it's really reasonable that you walk away and hand over his care to social services.

(If you were married I would feel less inclined to feel this way. I know lots of people will disagree with my point of view, but I'm just sharing my own personal feelings on your dilemma).

Dementia only goes one way (as you've witnessed), if your DP is violent or has challenging behaviour he might be able to get CCG to pay for his care, either way let his family sort it out as they will inherit his pension/estate - not you.

Your DP could make your life unintentionally hell. You didn't sign up for that. Relationships shouldn't be prison sentences.

@Pamtechnicon

As you disassociate yourself from this, you will have no real say in his care.

Please be prepared for that. Albeit his potential dementia will change him anyway until he's virtually unrecognisable to how he used to be.

Be free. Remember, 'I don't want to be tied down' goes both ways. Would he care for you if you had dementia or a long term illness and he didn't ?

toffeecoffee yes, not all dementia sufferers become shouty / unpleasant.

Anyway, I posted previously without reading op's later post about what shape her bowing out of this would take, and I personally think, it sounds like a really good approach. One stint of long-term caring for someone with dementia is a chunk of your life and it doesn't seem he would be high and dry. There is no hypocrisy or selfishness going on here, just a long hard look at a really horrible choice with all benefit of hindsight which, as you say op, many don't have until much further down the line.
No-one wins here and OP you sound like you are facing up to a really tough reality with strength.

I'm not saying he will be sectioned but if he is, his care costs will be met by the government.