Dad's narrative that he 'barely sees me'

[WistfulDrinking]

Just a bit depressed about this. My dad has dementia and a persistent narrative that he 'barely sees me'. DH and I live at at a distance, but, for example, at Christmas we stayed with them for a week - on a broken bed in their filthy, hoarded house that they refuse any intervention with - just spoken with my sister and our week in their house is now 'they didn't even get out of the car'. My mum apparently just sits blankly and doesn't contradict this.

We stay with them, we take them out on day trips of their choice, but it seems not to be registering. Half the time my dad gets my sister and me mixed up, but it's always me he 'barely sees' not my sister.

Not expecting anything that can help, just wanted a bit of a moan.

I get it. My DF has dementia. I’m the only DC who visits but he talks to the care home staff endlessly about my sibling. He also told another visitor that he never sees anyone. Likewise I saw my DGM every week, yet the one time my sibling actually visited it was all DGM could talk about afterwards. You’d think the Queen had visited!

I get it, it’s upsetting to not be remembered, it doesn’t mean your visits don’t count and aren’t appreciated though.

Dementia is so cruel. Sorry you are also dealing with a loved one affected

It's an emotional truth.

What he means is that he wants to see more of you, that he wants you around.

He doesn't remember the visits.

Take it as a compliment - I know it's hard to deal with.

I commiserate I remember when this happened to me with my Mum. It was about 6 months after diagnosis, towards the end of 2018, when I was still thinking of her as a bit forgetful, not quite herself.

It had been an awful time with hospital appointments for her, multiple hospital admissions for her physically ill husband. I'd been travelling up and down to their house all year helping out, having to stay with them for several weeks at a time. On top of that they had been up to visit us once and we'd been to visit them 2 or 3 times with the kids.

Then on the phone one day I mentioned my in-laws were visiting for the weekend and she snapped really nastily "we never get to see them" (my children).

It doesn't sound much now but it really knocked me for six, and hurt so much. In that one moment I realised she remembered nothing, and the Mum I knew was gone forever. She would never have said that to me before, she would always have been careful to be considerate, not upset me or put pressure on me, put my feelings first. I was so angry. I still have the notes on my phone I typed up listing all the times we'd seen them that year, all the time I personally I had spent with them driving them backwards and forwards to hospital, looking after them. All forgotten. I think I planned to ring back and rant at her. But I never did.

I have no advice I'm afraid - although it might make you feel better if your Mum contradicted him it wouldn't make any difference and maybe she knows that.

It's a vicious horrible disease, the worst. There's a documentary just been made with Colin Firth narrating - I've seen a clip where the voiceover says if you have a parent with dementia you have to watch them die over and over and over again. And that's how it's been for me - 6 years later it's been hell and she's now in a secure dementia unit. And I still can't finish my grieving.

Sorry for the lack of positives - I can only offer solidarity I'm afraid.

💜

It’s difficult because we keep thinking we can do things to make them happy when we can’t. You could sit with your father round the clock and he would be asking where you’d gone if you went to the loo for 5 mins. Don’t feel guilty about setting boundaries and sticking to time limits, it will preserve your sanity and improve the quality of your relationship with your dad.

My mum used to tell anyone who would listen that I never visited and never phoned. I did both regularly. It’s sad, and yet another horrible part of a horrible illness.

My mum always complains she hasn't seen my youngest brother for months, even when I know he spent hours there a couple of days before doing stuff like mowing the lawn or repairing stuff. But apparently I take her out for lunch every Monday even though I live an hour away and work 9-5 Monday to Friday and Mondays I'm in the office nearly 2 hours away. It happened once on a bank holiday a couple of years ago!

Losing sense of time is one of the first things that happen. They lose concepts like tomorrow and yesterday or last week. We have a diary so we can prompt mum when she says 'i haven't seen your brother in weeks' we can get the diary out and say 'oh look he was here on Monday'

Also don't worry that anyone who has any experience of dementia will believe this and think 'what a bad daughter for never visiting' . They will know it is just part of the illness.

Have a moan .... it is a horrible illness.

I used to work with people with dementia. One old lady was very upset about her failing memory and I said: "I guess our brains are like a box of treasures which we fill up and when we get older some treasures start to fall out as it is too full." She thanked me, said that was lovely and she was really cheered by the idea. Two minutes later she said: "What was that nice thing you said?" The lesson I learned is that for someone with dementia life is "of the moment" but these brief moments have their own value, even if they are fleeting.

Thank you for your kind words and solidarity. It's so hard because in my head my parents are still the people they always were - by no means perfect but distinctive people - and I struggle to comprehend that my dad isn't really there any more, and my mum seems to have given up and moved into a world of her own. It hurts that my dad's mental image is of me waving to them through the car window, or whatever.

A couple of years ago, we went down for a week to cat sit for my sister and didn't stay in my parents' house for that reason, although we saw them every day we were there, even going for a meal in the evening after we'd spent a couple of days with my husband's mum. I wonder if that is where the idea has evolved from - every time since we have stayed in their house, but for some reason that one time we didn't has stuck.

You know he has dementia so you’ll have to try not to take what he’s saying personally, he obviously doesn’t know what he’s saying and he’s not misremembering things intentionally. I can understand it just be upsetting that his illness is clouding his view of you, but it’s the dementia talking not him, it is hard that his illness is projecting this onto you and not your sister but again, it’s not personal. He has an illness which is causing his mind to get confused and misremember things. I am sure he appreciates the time he is spending with you in the moment, even if afterwards he is not remembering it clearly and is getting stuck in a cycle of thinking you don’t see him. This might signify how important you are to him and how his illness is manifesting the hurt he would feel at not seeing you because it is a deep rooted fear based on how much he enjoys seeing you. You can’t do anything about the way his illness is presenting and unfortunately you can’t stop a person with dementia misremembering and getting confused, all you can do is continue to ensure that the time you spend with him is enjoyable and know that he’s enjoying it in the moment regardless of whether he will remember that enjoyment a few days later.

Even without dementia they do seem to remember differently as they get older. Mine has been reminiscing about our lovely times together and how much she misses that/why can't we see her more often.

We've only seen her 3-4 times a year for at least a couple of decades. Her choice originally as she was too busy doing other things! She's somehow turned something that happened once or twice a year into a regular occurrence that used to happen!

My bil drives 5 hours to see mil, stays for two days & mil has forgotten he's been by the afternoon.

There is nothing you can say that will change his perspective.

A couple if weeks ago my eldest brother came down for a couple of days. Spent a whole day and a morning with mum, took her to an appointment, sorted some admin etc. He lives 5 hours away (and he's the favourite) so a visit is a Big Thing. I saw her the evening of the second day and she'd completely forgotten his visit.

So sorry to hear this OP.

Have you seen the film "The Father" with Anthony Hopkins? It's really well done and gives a perspective of what it's like from the perspective of both the father and the daughter. It's really moving.

Thank you - it is very helpful to think of his life being 'in the moment'. He mostly seems content enough, in what is now a very small world for him.

I haven't seen 'The Father', I will look out for it. My sister and I are hoping to get my parents up to me for a visit when it can be sorted logistically (as they can't travel independently, we have to do a halfway swap at a service station) I'm hoping this might be more memorable for him - probably a futile hope but my mum might enjoy the change of scene.

Thank you again for your supportive comments, it's helped me to share this with people who understand!

Just watch out for taking them away from familiar environment and routine - that can throw everything for someone with dementia.

Good luck!

So true. My mum stayed with us Christmas before last and she was much more confused than usual. She thought we had borrowed someone else's house - weve lived here over 20 years. Told us about her daughter - me. This year we picked her up in the morning and took her home in the evening even though it meant 2 2 hour round trips.

Indeed - familiar territory is so important for people with dementia. My mother came to us for Christmas one year and totally lost it - she was wandering about in the nude. She was much better at home.

My mil doesn't visit anymore. My fil thought it would be good to do a massive roundtrip to see bil & us.

She arrived here in a state of delirium as the car journey had been endless for her.

It was seriously scary. It's the only time I've cried (after she calmed down & was safely at their accommodation) as it was really sad too.

Routine with occasional stimulation is probably best but it's very person-dependent.

A good point about familiar environment - they used to come here regularly in the old days so I am hoping it won't be too unfamiliar.

My mum used to come here regularly until dhe stpooed driving about 5 years ago and we've been in the same house for 23 years but it was awful when she stayed Christmas before last.

One thing a friend of mine does it has stickers made up of her face and then every day she visits, she sticks her face on her Mum's wall calendar to mark she's been there.

It helps her Mum see she is visited regularly.

Not sure if that would help, but she finds it works for her?

We do this. We write what LO did on the day and what they’re doing the next day and who they’ve seen in a big book left on the table near where they sit. It does help. ( we’ve got a huge sticker with do not move on it on the front)

Being in the moment with them helps -so if he says 'you never visit':you can say 'i am here now'. My MIL went through a phase of asking to leave with us every time we visited and we would say, we can't take you today, we have to do (something)' which would always calm her down. We wouldn't say 'no' but would always be sort of optimistically vague