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.

@EmbarrassingAdmissions
Agreed.

The measure of him was clearly to be seen when he tried to dump caring duties that he and his siblings didn't want to do, on his partner he refused to marry.

What a prince!🙄

I certainly hope the OP is busy organising a rental.

*The measure of him was clearly to be seen when he tried to dump caring duties that he and his siblings didn't want to do, on his partner he refused to marry.

What a prince!🙄

I certainly hope the OP is busy organising a rental.*

This^

I really wish everyone would stop it with the 'he refused to marry her' line. We met when we were older, both home-owners, both with our own pensions and savings and no intendion of having children.

If marriage had been important to either of us I dare say we would have married. But he, having had one pretty horrible divorce (he loved his wife and she left him for someone else) was no fan of marriage and I, being totally independent, didn't feel it was necessary either. So enough of the 'he didn't think enough of you to put a ring on it' nonsense.

And please, no more of this idea that he tried to force me to look after his mother. He loved his mum and wanted the best for her — which he briefly thought we could offer in our home. But having had experience of the everyday reality of dementia I said no: I had a better idea than him of the reality of double incontinence too, having also nursed my own mother. I said no and that I would support him and his siblings to find a decent care home for their mother and that was what we did.

My mum has dementia. Her and my father (who died 13 years ago) split up about 20 years ago and she got a new partner (who was actually someone she used to go out with before she met my dad, so they had known each other for about 45 years).

They moved in together and a few years after she started getting forgetful, it was clear what was happening but she refused to go to the drs or even acknowledge something was wrong. She declined fairly rapidly due to not getting it diagnosed early enough for medication to be very effective. Her partner was wonderful, he took on more and more of her care despite them not having been together many years. But it took its toll on him, he was a very active man in his late 60s and it just wasn't the life he envisioned or deserved.

He eventually spoke to me about how hard he was finding it and he just couldn't cope. I gave him my blessing (not that he needed it) to move out and get his life back. He's a man a few words but I think this really touched him as he didn't want us as a family to think he was just bailing on her when it got tough. He visited her at first and had her come to stay for weekends but this also became unmanageable as she got very distressed as she had forgotten who he was. The last time she got so confused she defecated on the floor and walked it everywhere!

He now comes to visit me and my daughters still but no longer visits my mum and I totally respect why. Mum hasn't known who any of her children are for a few years, needs full time care, is doubly incontinent and is essentially like an angry or completely vacant baby (dependent on the day) in an little old lady's body. I wouldn't wish having to care for that 24 hours a day on anyone, no matter how much you love them.

I’m a nurse, with lots of experience in dementia care.

I would absolutely encourage you to walk away, or at least get other agencies involved so that you have your own life, but the care is carried out by someone else. But then still visit your OH etc.
Working 2x 12 hour shifts a week in dementia cafe is enough to wear me down. I couldn’t do it for a family member, or it’d be a huge struggle. The fact that your whole life has been affected by this cruel illness, now means you should make the most of your retirement. We only have one life and yours has already been so heavily impacted. Make this time for you. Thinking of you…please don’t feel selfish for making a decision that is right for you,

I think that people often try to assign blame, because it makes a situation easier to understand/deal with. However, here there is no blame. OP isn't being a terrible human being because she knows that she can't go through this again, and conversely, this isn't about him not deserving care from her because he didn't marry her.

It's all just incredibly sad. Practical decisions need to be made (assuming this is dementia) and the sooner they are made the better. In my experience, people with dementia cope less and less well with even the slightest change as their disease progresses. So while separating will almost certainly be a huge wrench for both of them now, it would be harder for him later (and later no, she might have some physical damage (back injury etc) as well as the inevitable emotional strain).

Op please don't feel guilty about ending things. As others have said you don't have to abandon him just come to a mural arrangement that gives you your life back and his the support and guidance he will need. Having just lost my mum to a similar condition it is absolutely soul destroying to try to care for them and retain a piece of yourself at the same time.

I wouldn’t blame you at all.

Why would anyone expect a family member to look after them when they can’t even recognise family members.

I don’t ever want to go into an aged care home but if I am unlucky to end up suffering with dementia I wouldn’t put that terrible burden on a loved one.

That’s would selfish!

@AviciaJones you know that there is usually a period of several years bw diagnosis and not recognising family members, right? So are you saying you'd commit yourself to a care home the moment you were diagnosed ? If so you must be incredibly rich as you'd be needing to find c 50k per year.

If you wouldn't rush straight into a care home then you must realise that, as time passed, your faculties would deteriorate so you may no longer be a great judge of what a burden you were becoming. Indeed you might not even be aware that others are assisting you, let alone expecting it.

@AviciaJones horrible comment

@Porcupineintherough did you read what I posted...”when they can’t even recognise family members.” I never wrote as soon as they are diagnosed, do you need things spelt out for you?

@lollipoprainbow what is so horrible to believe it’s selfish to expect a loved one to give up years of their life to care for me full time if I had dementia and was incapable of even using the toilet without help.

Some shameful comments on here. Why on earth would you try to make a person feel bad about this and try to make them take on a role that they do not want and one that would probably destroy them. Why condemn a stranger to that life?
Would you give the same advice to your sons or daughters if they were in that situation?? No you wouldn't.

OP you are not selfish. You deserve to enjoy your life and I sincerely hope that you get to.

@AviciaJones well there's an awful lot of hard and difficult caring needs doing before you get to this point. During which you may be uncooperative, ungrateful and actively fight against st your loved ones bringing in any support. So saying "oh well I wouldnt expect anyone to care for me once I cant recognize them" doesn't negate the issues they'll face prior to that point. The "once you can't recognize anyone stage" is actually the easier bit for families because the person no longer gets to decide where they live.

I've never had any experience of dementia, thank God, but I wouldn't want any of my loved ones to have to look after me if it happened to me. It all sounds absolutely horrendous, and OP is quite right to not want to sacrifice the rest of her life caring for her man. We only live once, OP.

In my experience it only gets worse. It is so distressing and exhausting for everyone. With my DGM it was awful when she knew it was happening but that passed relatively quickly.

Your caring for him would be your whole life. He seemed pretty keen that you cared for his DM and he didnt want to be tied down to you so why should you be tied down to him?

Social services are very stretched and if they think for a second someone else will shoulder anything they emotionally blackmail people into giving up their own lives. My DGM thought this would happen with me.

The ones in my family who were so keen to care for her did absolutely nothing except tell the two of us who were how to do things. All those calling it selfish could step up, lose their lives caring for someone, hold down a job and their own lives and then be told they are doing a shit job for years.

I would be firm that you are only a visitor. You are not next of kin. You do not have any responsibility.

@Dillydollydingdong well aren't you lucky then

This thread is MN at its best. I’ve spent a significant chunk of my Sunday reading it and doing some deep thinking.

Good luck OP, you have my sympathy and for what it’s worth I think you’re on the right track.

I’ve never forgotten what my aunt said some years ago. Her husband had died some years before, and she’d become a leading light in a support group for those with family members with Alzheimers. She said that she wasn’t sad when he died, as she’d done her grieving over the long years before he died.

I’m ahead of the game in that I’m one signature way from setting up my two lasting powers of attorney (money and property, and health and welfare).

The thread has also made me aware of other things I need to know about, Advance Decision =living will) (which I was vaguely aware of) and Advanced Statements (which I was not).

A important thing to remember is that you can only organise these things while you still have mental capacity. Later is too late, and it needs a court order if you’ve lost mental capacity.

Here are the links:
www.citizensadvice.org.uk/family/looking-after-people/managing-affairs-for-someone-else/
www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/
www.nhs.uk/conditions/end-of-life-care/advance-statement/

I was told that if you are querying that you have dementia (due to forgetfulness or whatever ) then you don't have it.
But I'm not sure that's true.
I was speaking to someone who's husband had it, (he has since died of something else) and she said he would ask her to do the driving 'as he didn't feel like it' or avoid telling her the time if she asked, having normally been a strict timekeeper. I think he must have known something wasn't right.
A bit more support from GPs might be helpful here - at the moment it seems they would tell you it was normal ageing or ignore until you are a danger to yourself and others. If you had support and a plan you could put things in place before it's too late. My DB had very obvious Parkinsons which imv the GP chose to ignore. .... it was very obvious to the family once they knew the symptoms but as there was no family history it did not come to our attention. We knew there were problems but not what they were.

Thank you for posting these links. The complications of dealing with someone's finances, well being etc when there is no POA can be a nightmare.

@spiindoctor the problem withdementia isin the early stages you are often just running yourself ragged trying to sort out the chaos someone who is convinced they are just normally forgetful creates. For example I spend an hour yesterday sorting out my parents hearing aids. Friday my very frail dad went to bed first and put husband new hearing aids on to charge next to the bed. Mum's were in their box on her side. When he woke up in the morning neither set were there. They had been taken out of their boxes and put in a drawer. The boxes were in other drawers in a different room. Of course mum , who has early stage Alzheimers, denied having touched them and hadn't idea where they were so they spent all morning searching for everything. And that sort of thing is a daily occurrence that you can't put in mechanisms to avoid because they are random, like starting to reset the heating controls and then wandering off and forgetting you had started, also this week, and it is so, so draining to live with.
A friend's mum had her mother living with her. The house was like Fort Knox after she escaped inthd wee hours a couple of times. Then, while friend's mum was making the beds she put an electric kettle on the hob and set the kitchen alight. Then, whole friend's mum was hanging out the washing, she decided to run bath hut wandered off and forgot. Friend's mum only realised when water startedcoming through the ceiling. Friend's GM was convinced there was nothing wrong with her, like my mum "everyone get a bit forgetful as they get older"

@Her0utdoors what did you mean by the penalties of divorcing someone with future care needs?

OP do you own half the house? As you aren't married would this be protected?

@countrygirl99 You're quite right. The early years of dementia are exhausting. It's like being gaslit on a daily basis. I spent so much of my time in the car sorting out my mum's crises a couple of years ago. She didn't quite need carers, but hid/lost/threw away so many things it was a neverending conveyor belt of putting things right for me.

@freshcarnation just like constant gaslighting. Mum is absolutely convinced she has never been to the memory clinic even. Can't understand why she has been prescribed medication "for just the occasional forgetfulness". If you met her on the street and had a short conversation you wouldn't realise there was anything wrong, a slightly longer one snd she would be repeating herself. But if you bumped into her later that day she probably wouldn't remember meeting you.