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.