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.

Being a carer for someone with dementia is a very exhausting job and I completely understand where you're coming from especially since you've seen your mother struggle in your childhood. However, it does make me feel quite sad for your partner. It is an illness that nobody can control but there are treatment options that can delay it's detrimental impacts. Have you considered getting him checked out at the hospital to know how progressed the illness is and also maybe consider getting a nurse to help that may not leave you doing everything on your own? These are ofcourse options if you want to stay and help. You aren't married so under no obligation and if you want to leave you absolutely can. It's just a decision you can make honestly. Good luck

You always have the right to walk away, but to do so would be beyond selfish.

The future:

Option 1 as above: You stay. He gets worse and dies.

Option 2: You leave. He gets worse and dies.

Sadly, selflessness is not the issue here.

What a horrible situation for you, you have my sympathy. Did you ever discuss what might happen if this situation came up?

DH and I have had a similar discussion - he fully understands that if he does get dementia I will look after him and make sure his life is as good as it can be but I will not sacrifice myself to him.

You do sound quite detached from him but I haven’t been in your shoes and shouldn’t judge. I would always care for DH all the more if he was vulnerable as long as I could reasonably manage and I believe he would for me too, his dad did when his mum needed it and was doubly incontinent etc, he managed so much bravely. Each relationship is so different though, and i really feel for you being so affected by dementia already so partly understand.

Gosh, what an absolutely shit situation this is, for everyone.
I have never cared for anyone with dementia, the closest I've been is supporting the family and friends who do. That is enough for me to realise how tough and all consuming it can be.
I wouldn't judge someone for doing as you propose and leaving. You are still young.
I think in your situation I would want to talk to a counsellor or a dementia service to help me sort everything out in my head. I can see how frightening a prospect this for you, but like another poster mentioned, there is a middle ground. Whether this is emotionally manageable for you, only you can answer.
I'm so sorry this has happened to you, it must break your heart knowing that your plans can no longer take shape as you had wanted x

OP but there’s middle ground between becoming someone’s carer and ending the relationship altogether. It’s possible to get him care, maybe at home initially but then perhaps in a care home, without having to actively end the relationship.

And it says a lot about someone who essentially walks away from someone now that they’re no longer capable of going caravanning across Europe.

Personally if I were diagnosed with dementia or any other kind of degenerative illness I’ll be taking myself off to Switzerland or find a way to end things myself. But if in the event I ended up needing full-time care, while I wouldn’t want my partner to be the one to provide it I absolutely would hope that it didn’t kill all feelings he had for me.

Can anyone actually say you’d be comfortable getting together with someone who told you that they thought their partner had a degenerative illness and that they’d upp’ed and left them before they’d even been officially diagnosed? It doesn’t exactly create a picture of someone you could be secure with does it?

@CorrBlimeyGG

You always have the right to walk away, but to do so would be beyond selfish. No one enters a relationship intending to be a carer, but that possibility is always there and it's what we accept when we love someone.

If you do leave, then either stay single or be upfront with future partners that you'll leave them once things get tough.

They aren't even married though!

I don't sign up to be someones carer for the next 30 years potentially, just because I've been in a relationship with them for a while.

Why should ops dating life stop because her ex got sick? Sorry but are you for real? So what, she should live in sorrow her whole life? Wear a wee black dress and go about lamenting her ex? pft.

A person can break up with anyone at any time for any reason. Or even, just because they feel like it. No one is owed a relationship. No one is owed you becoming their carer.

Could you afford for him to move in to a care home or assisted living accommodation? When FIL needed a lot of care due to physical illness and dementia he moved in to a care home and MIL stayed in the family home. She was able to visit him regularly and take him for days out/days at her home etc but was able to have a life of her own without worrying that he might hurt himself or wander off. She used it as a way to remain his partner but not sacrifice the rest of her life. In their situation he had (like you) dealt with a lot of relatives with dementia and when he was well had made it clear that this was his wish. I know some people thought her selfish but I entirely understand why this was right for them

Ps it does sound like hes not himself already and I think my post above sounded too harsh as absolutely self preservation might be for the best , if it is indeed dementia his needs may well be beyond anyone’s ability. I do hope you are ok as it must be very stressful looking into it.

Yes I did it luckily his family wanted him back with them 4 hrs away and he wanted to go back every day I’m grateful

All those on here calling OP selfish - have you lived with and cared for someone with dementia? Do you have the slightest clue what it is like?

OP's OH didn't want to be tied down - here are the consequences.

FWIW if I were OP I would encourage their DP to attend a memory clinic and get assessed properly. Refusing to do this after repeated requests and discussions would be a relationship ender for me. After that I'd be making plans for future care needs now - it sounds as if OP's DP is deteriorating quite quickly, and that often happens with young onset dementia.

But ultimately no, I wouldn't stay. I've watched what it does because my mum went through it (before developing it herself). Dementia care is something that needs professional involvement.

Leave and enjoy your travel. Otherwise you face potentially another half a lifetime of increasing bad quality of life for you with no real benefit to your DP. As a pp said, setting yourself on fire doesn’t put his out.

I wouldn't blame you.

Go. You have the right to leave a relationship which isn't working for you for whatever reason you want (and it isn't 'selfish' to do so).

Women get shafted when it comes to caring work. Because we find it hard to walk away from those who need us. But ultimately, we have our own lives to live. I think someone said it on here...we are not 'service humans' for other people.

You are not a service human, OP.

@Pamtechnicon

To those who say I'm selfish, I would want him to leave me if I developed this horrible disease. I wouldn't want him to have the final stage of his life marred by having to feed me and wipe my arse and endure the endless repetitive chats and have to be constantly on the look out for disasters. I'd far rather he got to enjoy his life as fully as he could and leave me to professionals. If you love someone you don't want to tie them down or make their lives miserable, surely?

My fil has dementia. It's bloody awful for our mil and my dh is already run ragged caring for them. He has told me that he loves me too much to ever put me through having to care for him if he develops dementia himself. He insists if it ever happens that I'm to not be tied down by him and leave him to be cared for by people who are trained to care, who get paid to do it and who actually get a bloody break from it all. So I totally get where you're coming from. I wish you all the best x

You need to get him an assessment from the memory clinic Go for the middle ground OP if you still love him, you can still go travelling and not be his carer , he will still have some years left that he has some insight and will remember you. Tell social services you won't be his carer so there has to be plans put into place.

He definitely needs assessing, and then you need to think if you are prepared to do any care. If not, you need to get out quicker rather than linger because if you stay, you will be presumed to be taking care of him, and other care will not be put in place.

I've trodden a very similar path, and I don't think I could do that again for another man, it was a huge sacrifice, an awful time and I just couldn't imagine doing it again, I'm burying my head in the sand though and still thinking of starting another relationships- this post is a bit of a wake-up call.

Thing is, dementia isn't like a physical disability, I mean it would be difficult if someone can't travel any more or has chronic health issues, but with dementia you are talking altered personality, behaviour, the whole thing, the relationship you had isn't going to be the same.

I think you know what you want to do, and so do it, and don't worry what others say, if they want to care for him they can step forward and rearrange their own lives, can't they? (they won't)

You've seen what happens first-hand, so you know what's coming. That's different to someone facing this for the first time.

I think there is much more pressure on women to step in and fill care gaps, and my experience is that where there is a woman who might be pressured into providing unpaid care, then SS etc will try to make that happen. From my family experiences, much better and earlier care has been received by people who did not have an available relative.

I actually think it's kinder to make it clear early on what you can do and what you are actually prepared to commit to, rather than doing what is expected of you and then breaking down under the strain. I'm sure you aren't talking about just dumping him in an A&E department or walking out and letting him fend for himself. Obviously, you should make sure that his basic needs will be met, but I don't think it's terrible for you to not want to become his carer. It seems like you have done your duty to the limits of your ability, and recognize that you don't have it in you to start from the beginning again.

I'm sorry that you are facing this, it's completely unfair. I hope you find a way through and a solution that you can live with.

@Itonlymakesyoustronger

That's not fair.

I think you know what you want to do, and so do it, and don't worry what others say, if they want to care for him they can step forward and rearrange their own lives, can't they? (they won't)

Absolutely agree, the people who will make the most noise about selfishness and desertion will be the same ones who never lift a finger to actually help. Unless memes are suddenly considered a caring responsibility?

@Pamtechnicon

To those who say I'm selfish, I would want him to leave me if I developed this horrible disease. I wouldn't want him to have the final stage of his life marred by having to feed me and wipe my arse and endure the endless repetitive chats and have to be constantly on the look out for disasters. I'd far rather he got to enjoy his life as fully as he could and leave me to professionals. If you love someone you don't want to tie them down or make their lives miserable, surely?

You are not selfish. Anyone who is a carer for someone with severe and enduring mental health conditions or some form of dementia or certain brain injuries usually ends up there against their will and stands a very high risk of developing their own mental health problems as a consequence of being that carer (e.g. depression- 50% of carer for mentally ill devleop this themselves ). It is Not like caring for someone who is aware they are ill and appreciates what the carer is doing most of the time, and that is a difficult relentless task as it is. People with these types of conditions do not comprehend they are ill, their personality can change, they can be abusive, unpredictable, ungrateful. That is not their fault, but it is the reality. Add to that that support and care from the NHS for these conditions is dismal to non existent (compared to say support form people with cancer or physical illnesses) and as a carer you are dumped on and expected to provide what is tantamount to be a qualified clinical psychiatric nurse. It is also extremely difficult when that person is your actual partner. It will kill off any sexual attraction, emotional intimacy or affection. You simply become their carer. You go from being wanted to simply needed and people often confuse that with love.

People who are saying you are selfish have no idea. People who say that you should take this on out of loyalty and” how would you feel” have no idea. I hope that they never have to find out as it took me to hell.

It is actually brave to be able to recognise you cannot do this and consider now whether to end the relationship whilst there is chance to put a care provision in place. I would say though 60s is quite young for dementia, isn’t it, so maybe wait until they have done a proper diagnosis and you know exactly what the issue is.

Anyone, anyone calling the OP selfish…. Walk a mile in the shoes first.
Caring for someone with dementia is very hard and if you can’t/won’t do it then that’s your decision to make. Good luck OP

You aren’t selfish. Go, whilst you still have the chance - once he is diagnosed, all the family who would call you selfish will expect you to do everything so they don’t have to.

I think it’s selfish to leave someone because they get ill and will require looking after. But I think sometimes it’s ok to be selfish. I personally would feel a lot of responsibility to make sure he was living somewhere safe, and had the help he needed, but that doesn’t have to mean the same house as you, and being cared for by you.

Can you find out about what care he’d be able to access, even if it means selling his home etc? I wonder if you can put things in place for him without having to physically be the one doing the care?

My mother has dementia and she lives with me. It is soul destroying, it grinds you down so much. Of course you're not being selfish! You've spent part of your life already with the spectre of dementia haunting you, yes of course you deserve to escape from that and have some good years doing what you've dreamed of.

Your partner didn't want to be tied down by marriage, so here he is, not tied down. He wanted his mother to live with you so you would look after her needs, not him.

He has a son who is abroad, and has siblings who left the pair of you to it when their parents had dementia. It's time for any one of them to now step up and help their father/brother.

He's shouting at you through fear, he knows there's something wrong as much as everyone else knows. I doubt you're planning to leave immediately, but start thinking about what kind of thing you want to be in place for him by the time you do leave.

Also, get in touch with DVLA. He shouldn't be driving, he could kill someone.