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.

@Mymapuddlington

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.

Heartbreaking! So so sorry you had to witness your loved ones suffer this fate.

Actually its true @ToffeeNotCoffee. My dad was very angry and shouty initially which was all denial and fear and trying to cope when he couldnt. These days he's placid and rather jolly as long as he's not feeling threatened. In many ways his dementia personality is much nicer than his real one.

In my experience people tend to refuse to go to the gp or memory clinic. Could be they are scared, could be they don't realise what is happening. My friend is going through it with her mum, in her case she really doesn't seem to be aware of what's happening

Definitely not selfish. I worked with people who had dementia for years. No way could I do it full time

I know of two situations vaguely like this. In both of them the 'girlfriend' of the person with cognitive deficits basically gatekeeps the care. They don't live with the men, and I doubt there's really a romantic or sexual relationship. But they are the 'in case of emergency' person, we have leave to talk to them, they can steer conversations about care. But very importantly, they have their own lives.

OP the above is valuable. If you let SS and HCPs know you are a resource to have conversations but NOT a carer.

I wouldn't throw myself on the pyre of DH's illnesses. I would for DD.

How difficult for you. I would leave. But I'm quite selfish.

Thank you @CleopatrasBeautifulNose the only thing she managed was to write ‘I want to live’ in a notebook in very shaky letters. It’s utterly heartbreaking and she was only in her 50s.

Oh, that's brought a lump to my throat and tears to my eyes. Life can be so unfair. I hope you are managing to live despite the weight of this tragedy.

@Mymapuddlington

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 so sorry for what you and your family have been through @Mymapuddlington but this really puts it all in perspective.

@Mymapuddlington I am so sorry for your losses, how difficult it must have been losing both parents so close to one another.

And I can only assume the poster that said you have no empathy has zero experience of caring for a loved one with dementia.

We visit our mother very very often, she's been my mother for 45 years, she doesn't know who I am, she doesn't care who I am, if she is in bad mood I am a target regardless of who I am. We pay for her care, she is well looked after, but nothing absolutely nothing can prepare you for the relentlessness of a loved one wanting to 'go home' every day, looking for a parent or sibling that died decades before, hearing a baby crying and looking for their lost children, having mobility issues one minute then sprinting for dear life towards a main road, wanting you to get them 'out of here' ie: their own life - nothing can prepare you for this, and if you're not married, you've made no vows, then go, protect yourself.

I have told dh if I am ever diagnosed with alzheimer's or dementia, find me a nice care home and come visit me from time to time. Realistically I won't even know a thing.

Trying to, it’s difficult but hopefully with time it will get easier. It’s made me realise that you can’t live for anyone else, you can’t spend time wondering if you should do something or not. You have to do what makes you happy because you never know what’s around the corner.

More thanks. I didn't know I could cry so much. It's the relief of having someone say it's okay to say no.

Whereyouleftit, thank you for shifting the perspective so that I can see myself as sensible and not selfish. I think there's a bit of me, the bit that had to be evacuated in the early hours from the house when DGM set fire to her bed perhaps, that feels that being required to care for him could kill me. It really does feel like self-preservation. That will sound ridiculous to anyone who hasn't had the experience of living with someone with dementia, I know.

For those who've called him selfish for not volunteering to run along to the memory clinic, I don't think he's being selfish. If he's still refusing in six months' time I'll change my view. I think you have to be very strong to look reality in the eye and contemplate a horrible fate. I have no idea how affected he is. I can remember a social worker coming to see my really doolally DGM and DGM greeting her like Maggie Smith in Downton and ordering my mum to make tea and then holding a very cogent conversation while my mum slumped in the background, despairing. I think at the moment DP is in denial. I hope it's a stage we can get through. I think I can ask a couple of our friends to start talking about it to him, so it's not just me nagging.

There's very little property for sale or rent in our area but I have a colleague who may be able to help. I'll start enquiries today. Next thing to decide is how and when to tell him that I'm moving out. That will be awful.

Like in a plane crash, you need to put your own oxygen mask on first.

OP,
You got together late and he chose not to marry you which you accepted.

However, despite this you chose also to be a support to him when his parents declined.

It reads to me that you have been an extremely supportive partner during your time together, more than a lot of people would have been.

I really think you need to stop the thinking and start doing.

You need to move away soon and not allow yourself to be guilted into anything.

Adult services can be absolutely ruthless in trying to guilt people.

My friend had to block them due to their behaviour when her bachelor uncle became ill.

She made the mistake of ringing an ambulance when her uncle called her parents and was plagued by them.

She was actually told she was selfish for not agreeing to bring him home to live with her 🙄 as he was taking up a bed that was needed.
Unbelievable.

She was so upset.
She also worked FT and wasn't even particularly close to her uncle.

She said she told her parents she would never be involved again.
Her uncle went into a home and was well looked after.

The only good thing that came out of it was being the only daughter with 4 brothers it gave urgency to her organising her brothers to step up to start sharing the load with her parents before they needed it.

Move on this ASAP and before winter beds down.

Absolutely no judgment from me. You need to do what's best for you.

I think you will have to tell him you are moving out and see what happens next OP He may not wish for any more contact with you after that, so planning to be friends, or a guardian or whatever may be premature.

Have you drawn up POA for each other? If you do continue to have some sort of relationship that is something he may wish to consider.

It's not as if you'd be leaving him high and dry. Sometimes you have to create the space to make other people who ought to have some share of the load recognise /acceptt that. You're managing the situation for the best of all involved imo.
A good long think about how to do it as kindly as possible is your next step. Maybe when you can show him the support he will have?

Re memory clinic etc OP, my mum was in denial for a very very long time. Pretty much until it was taken out of her hands. She wouldn't go anywhere voluntarily and eventually she had a memory assessment at home. It's not them being selfish, it really is denial and not wanting to face up to things. It's a scary time.

@Pamtechnicon my heart aches for you. I don’t think you’re selfish and no one has a right to judge you.

I hope you find peace. Enjoy your travels. Life is short - live it .

I'm struggling to read the posts that say you're being selfish. It is a luxury to call someone who doesn't want to care for another person with dementia selfish. Anyone who has cared for a dementia patient would totally understand where you're coming from.

I think I'd stick around for a diagnosis make sure there was care in place whilst being very clear I wasn't available even short term and then I'd start with short trips away. Once I was confident his needs were being met I'd really crack on with your life.

Sounds to me like vascular dementia although I've no way of really knowing. I'm so sorry about the hand you've been dealt and I really do think if anyone calls you selfish you should tel them to piss off.

I can completely understand your position despite never having lived with anyone with dementia. I walked out on my alcoholic husband. He was getting worse and refused all help. Some people called me selfish because alcoholism is a disease and theoretically there is a cure, but I believe he had passed the point of no return and he was putting my health and even my life in danger on a regular basis. I was becoming his carer and he changed from being the man I loved to a violent man I didn't recognise. He now has a form dementia brought on by alcoholism along with many other health issues and so I know I made the right decision. I feel sad that he is alone and I still love the man I married, but I left twenty years ago and have no regrets. Our children who are now all grown-up, but were young when we left, also believe I did the right thing as their lives would have been seriously compromised if we had continued to live with him. You need to live your life.

I look back at a family situation and think being more selfish would have been a much better option around. Less impact on the health of the carer, more choice for the person being cared for instead of accepting what was available because there was a crisis.

Look after yourself.

I'm struggling to read the posts that say you're being selfish.

Some posters on MN are very generous with other people's time and money. It doesn't mean anything in real life.

Of course it's difficult for you but can you even imagine how frightening and hard and worrying it must be to have dementia? Especially at the beginning where you later have moments of clarity. Do him a favour and leave.

You'd get no judgment from me, OP.