Dad's narrative that he 'barely sees me'

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'

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!

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.

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.

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 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 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