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.

I feel for you. I love my husband but not sure I could deal with dementia either…. I feel for you.

@AlternativePerspective
This is (potentially) dementia but the truth is that we’re all just a car crash away from becoming severely disabled. Do people really think that a disability should automatically cancel out all feelings you have for them? That’s incredibly sad if so.

The trouble with dementia is that it destroys the identity of the person you love. It's not that they lose limbs or vision or hearing. They lose consciousness. Relating to them is a bit like trying to tune in to your favourite radio show when you're on a boat in a storm with a very patchy signal. They fade in and out. And for those who love them, this is agonising. Getting occasional glimpses of the person you know, and resenting the way their body has been taken over by an impostor who spouts nonsense, gets boorish and irritable, and has a puerile sense of humour.

OP, I think the best thing you can do is help him find appropriate care. This kind of illness requires care by people who understand the disease progression and are not distressed, as you would be, by the changes in him.

A friend of mine decided to be the full-time carer when her DP was diagnosed with Pick's disease (frontotemporal dementia). I'm not sure she would have made the same choice if she'd realised it would go on for 10 years and totally poison her life, as well as destroying all happy memories of their time together.

I'm so sorry you're in this position, OP. You have probably been grieving your loss for some time without even realising it.
Good luck taking the steps to detach and place him in safe hands. I hope you have many years of happiness ahead of you.

@SimoneSimone

You are not married and you've only got one life. But consider this. If he was in your position , what would you advise him to do?

If he were in a relationship where the partner: *had attempted to manoeuvre him into providing intimate and personal care to a parent *refused to consider marriage in the name of independence *rejected all entreaties to consult a GP or obtain medical advice then my advice and considerations would be the same.

The opprobrium of people who have largely a scant understanding of what's involved in providing care should hardly register against what can be involved and the possible harm to the OP .

I've had too many family friends recently who've concealed the miserable reality of their situation from their children. When one spouse has been admitted to hospital with cancer and the children then attempt care for the demented parent, they rapidly understand why the other spouse so neglected their health and became ill. All too often the partner has died, and the children feel guilty that they'd no idea of the sheer misery of the situation, and the remaining parent has to be placed in a nursing home anyway.

I agree that he needs investigation first. Having had a parent with dementia jump out of a moving car to avoid a hospital apt I appreciate it's difficult. They were eventually sectioned and subsequently diagnosed.
I dont think its selfish to not want to give the rest of your life to being a carer. I wouldn't want my family to do that. Having watched dementia destroy someone i loved I'd hope that i had enough notice to end it all before i wasn't capable any more.

In sickness and in health is all very well but as my DH has barely changed a nappy, never cleaned a toilet, almost never cooks , if I'm the one that receives the 'care' I'm in for a pretty poor time. On the other hand I'd become a fuultime carer, cook and bottle/bum washer.

To answer the question of whether you're being selfish by not sticking around, the answer is yes. Of course it's selfish to decide that you've enjoyed their company while they were well, but now they're in for a rough time, you aren't prepared to support them. But hear me out.

Being selfish isn't necessarily wrong. We all consider our own interests when we make decisions every day. The only difference is where we draw the line.

I cared for my dad throughout his illness, Huntington's Disease, which included a rampant and aggressive dementia. It was awful. My heart goes out to anyone who's had similar experiences with any loved ones.

But if the situation were to arise again, I'd do it again. I love my DP and for me, I wouldn't enjoy my trips around the world and other social activities that I'd planned to do with him, knowing he was at home and slowly fading away. I'm not married but I'm completely committed to my DP and for me, that means caring for him and fighting for his best interests when he can't. I think that's an integral part of being in a committed relationship.

As others have said, we get one life on this mortal coil - make decisions that you feel are right. If you feel comfortable with the idea of stepping back from the relationship and leading a life away from him, then that might be the right decision for you. There isn't a single "right" answer here.

I make decisions by imagining being on my death bed and looking back at my life. What would you regret more? Would you regret sticking with him throughout his illness and missing out on travelling the world while still fit and healthy? Or would you regret leaving him to travel the world - would the wonderful experiences you could undoubtedly have make up for walking away from him? No judgement from me - only you have the answer.

Sorry - I meant to also say something about the PP calling OP's DH selfish for not having tests/going to the clinic.

Yes it is selfish - but it's an integral part of dementia, losing the ability to empathise and see things from another person's perspective. It was one of the first things to go with my DF. He stopped caring about how things affected me, he became manipulative and I cannot begin to tell you how difficult some medical appointments were!!!

So, the OP's DH may be selfish not going for an appt - and of course it's bloody frustrating. But equally, if he DOES have dementia, his selfishness may be a symptom of his illness rather than a consciously selfish act that he's fully capable of comprehending.

Dementia really is a shit bag.

I married in Church and made a sacred vow before God. I made a very conscious commitment. You didn't make that same commitment.
You shouldn't become his carer.

@Valeriekat

I married in Church and made a sacred vow before God. I made a very conscious commitment. You didn't make that same commitment. You shouldn't become his carer.

Quick [merail] - years ago and possibly in an Ellis Peters book, I read the claim that the Church at the time treated people with leprosy as if they were legally dead. The person could survive for a very long time and while they were still alive (but legally dead) their spouses were free to remarry, heirs were free to inherit as if they'd died .

Leprosy was perceived as a living death. I sometimes wonder if conditions such as dementia are similar for our times but without the same compassion (?) from the Church or wider society.

And, yes, the several forms of dementia have very different paths of progression. [/merail]

My FIL left/abandoned MIL when she was diagnosed.

Horrible, selfish man.

@Valeriekat that's how I feel too. I'd no more desert dh because he was diagnosed w dementia thsn I would if he were diagnosed w cancer. Whatever happens, we'll go through it together. That doesnt mean I'd be his sole carer or that the time might not come where residential care would be the answer (for one or both of us).

But the OP isnt married and is free to leave anytime.

I ended my marriage because I absolutely knew that if I needed care, XH wouldn't provide it. He didn't have it in him. So why should I run the risk of providing care to him? It's a two-way street. If he had shown that he had any intention of fulfilling the solemn vows we took - as my DF did for my DM - I would have done the same for him.

So without those solemn vows, and indeed with OP's partner having made clear he wouldn't be tied down, she would be a mug to be his carer. We reap what we sow.

In OP's position I would move out, make sure he has some sort of care provision in place, visit occasionally. But yes, any relationship beyond friendship would be over.

Selfish is good.

Yes I think dementia is like that, more for the partner than the victim but it was considered contagious I suppose which meant that sex would have been deemed impossible and therefore the marriage would be over.
OP you have only been together for 21 years. More years apart than together. He "didn't want to be tied down". You shouldn't be tied down either.

@Pamtechnicon all those calling you selfish obviously have no experience of the issues. I do from a professional prospective and I always feel more sorry for the partners/relative looking after the person with dementia than the patient who is often in denial followed by a selfish phase of refusing anything which will make their carers life easier! You sound like you are well aware of the situation with social services assistance and would completely agree with your getting out sooner rather than later when it will be presumed that you will manage all care! Ignore the people calling you selfish, they need to try to keep someone safe 24/7 on very little sleep. Its worse than having a toddler who you can put in a cot and know they are safe or lift into the bath when they have soiled themselves. You sound like you have had a really tough life, I empathise from a personal point of view caring for parent with mental health issues, followed by decades of husband with different mental health issues. I was 60 before I finally said enough is enough, I deserve some peace, and last couple of years have been bliss, just wish I had the courage to campervan around Europe on my own, you go and enjoy, you deserve it👍

I married in Church and made a sacred vow before God. I made a very conscious commitment

Doesn't stop married husbands/wives taking the piss regardless of sexual orientation or beliefs.

I guess this is the kind of thing that people who get together later in life should discuss to make sure there are no different assumptions.

I have been married to DH for 20years the same amount of time as OP has been with her partner although so far amounting to about half my life. We have children together and a whole life together. Of course I expect him to stick by me if I have some life changing diagnosis as I would do for him and as my parents did for one another.

A relationship later in life with no kids is a different matter I guess but surely it's something you would speak about.

Dementia is really demonised on this thread. I work with people with dementia day in and day out and honestly the picture painted here is very bleak vs the reality for lots of people. Many people would have a good few years post diagnosis with just a bit of poor memory and would still be able to do most things for themselves and enjoy their lives. There has been a lot of work done on living well with dementia but people on this thread appear to universally believe that everyone has personality changes early on, lacks insight and quickly descends into requiring 24hr care which just isn't the case for many people.
It is deteriorating. It is so far incurable but most people have time to make plans and have some QOL.

Dementia seems to her treated differently to cancer certainly. There would be huge judgement for leaving a partner with cancer but my mum was very disabled by her cancer at a young age and relied on my dad to do most things at home so that he could no longer do a lot of stuff for over 5 years. His life was certainly curtailed but he did not begrudge it.
What about neurological illnesses eg MS? Parkinson's? A brain injury or stroke? Acceptable to leave someone with those conditions or not? Or is it literally just dementia that is a 'living death'

Nobody has demonised dementia. People have shared their own personal stories. You can't speak for those people or their experiences. There was NO time for my mother. The decline was fast as it is for a lot of people. Within two years of diagnosis, my mother could no longer care for herself - she couldn't wash, bathe, hell, she couldn't even go to the toilet.

The decline has been very fast fit my mother too and she still not only thinks there is nothing wrong with her but that she is completely capable of caring for my extremely frail dad. She is actually a danger to him, her getting confused over the time led to him having a morphine overdose, but resents carers coming in and the solutions we have to come up with for problems she doesn't believe exist.

I think it's great that there are some people who can live with dementia for many years however vascular dementia has a prognosis of around 5 years from diagnosis - that's assuming it's diagnosed relatively early. Vascular also brings about quite volatile personality changes.

Leaving people with a brain injury is not unusual either because of the personality changes. Which shows that it's difficult.

The situation here is quite nuanced - I'd suggest rereading the OP.

@CornishGem1975

I think it's great that there are some people who can live with dementia for many years however vascular dementia has a prognosis of around 5 years from diagnosis - that's assuming it's diagnosed relatively early. Vascular also brings about quite volatile personality changes.

Exactly. There are several varieties of dementia that are not the slow progression that people tend to associate with Alzheimer's Disease (it can be very much faster for people with early onset AD, of course).

People with dementia can be violent when they're distressed and frightened (understandable) and they can be remarkably more difficult to manage than many people anticipate. Not least because people are trying to handle them gently and not cause harm.

Leaving people with a brain injury is not unusual either because of the personality changes.

I'd agree. Depending upon the severity of the injury, who would care to produce the risk-benefit analysis of harm to the life of the carer who might be subject to a stream of abuse and negativity? Or just non-stop enquiries and confusion with no hope of relief in sight?

We need some very serious conversations about formal (homes, adult services) and informal (neighbours, friends and family) social care.

People calling the OP selfish are being unnecessarily cruel I think. My elderly mum cared for my dad for years with dementia, hiding how bad it was (double incontinence etc) from us as long as she could. By the time dad was hospitalised, then admitted to a nursing home, mum's health had broken down. I wouldn't wish my mum's experience on anyone at all. Do what YOU need to do OP, you've had it hard enough already. All the best.

Pamtechnicon I'm so sorry about your situation.

Do whatever is right for you. And have peace.

Just be grateful you didn't make a sacred vow before God, or you'd be stuck for ever, and not just in this life! 😉

I think you need to do what's right for you, although do make sure it's dementia first!

I have a lot of family history of dementia and I suspect that one day it will be my turn (although of course I'm hoping there will be new treatments etc before I get there)

I don't want my partner or child to be burdened with caring for me, particularly if I'm no longer acting like me. I will be making sure they know what I would like in a care home though, and I hope that if that does happen to me, that they will help to make sure I get to go somewhere I will like. Other than that, I would want them to go and live their lives, just as I would if I were no longer around.