Dementia again

[Kenickie]

I'm sorry, Tex, that sounds really hard. My nan is in greater London to the far west and her memory clinic definitely involved going to an actual clinic if that helps.

[Texaco Shirley]

The GP phoned today. I had spoken to her the day of the appt and she told me she’d had to go back (so ended up going 3 times that day) as she couldn’t give a sample the first time. What she didn’t’t tell me was that she hadn’t signed in with the receptionist either time and it was luck that the GP saw and recognised her in the waiting room when he was calling another patient. Then when she couldn’t do the sample the first time she just filled the pot from the tap.

Anyway, she got there eventually and it came back clear for infections and proteins so the GP said he would do the referral today giving them my details to contact directly.

[absley]

Well done for getting past this stage, Tex - I'm sorry it's such a slog.

[Texaco Shirley]

I’ve just had a phone call from the clinic, they are going to come and see her at home on Wednesday. Obv I will be there too.

[Lily]

This sounds so bloody tough, Tex. I hope that you're both able to get some guidance and support on Wednesday. Is your mum aware, herself, of how bad things have got, as a result of all these tests?

[Texaco Shirley]

I’m not sure really. She’s only really had the GP one so far and he didn’t sugar coat it, he said it had gone badly but I think she’s in a bit of a bubble and I’m not sure how much is going in. I haven’t told her about the referral yet. If I tell her today she might expect it tomorrow or she might forget entirely. It’s difficult to know the best approach at the moment.

[Texaco Shirley]

I told her about the referral last night. She has agreed to it but insists she has no memory problems and is a bit wary that once she’s in the system she’ll never get out. She has either forgotten or dismissed the GP memory test as nonsense I think.

[Mountain Goat]

Oh, this is so difficult, I'm really sorry. This is a really hard part; it's completely standard for people with early stage dementia to be in denial or, even if they're aware themselves, to try to cover it up and avoid help. I mean, you can understand it, I'd be the same. It doesn't help that you have no idea whether they're aware and trying to hide it, or if they're forgetting all the things they've forgotten, if that makes sense.

For me, being brisk and light hearted about it worked well with my mum and pulled her out of spirals of panic but these things are so dependent on the individual. Also, including a stop for chocolate eclairs in the day's plan.

[Texaco Shirley]

You have it exactly. She can’t stand being wrong and has always done whatever it takes to save face so it’s difficult to know. I do try to challenge her sometimes (like last week when she seemed convinced that my uncle who’s been dead for 20 years had been there and possibly me as well) but she gets really stressed and snappy then.

[Mountain Goat]

I found it easier - and not just with my mum - to go with whatever they believe the world to be at that point. It's really hard at this stage because a lot of the time they're fine and normal, so your instinct is to try to bring them back to that, but it often just makes them more stressed and more worried about their perception being wrong, and losing control, and feeling silly and ashamed. I spent a lot of time apologising for not having been to see my Nana, and having to leave the room for ten minutes while I pretended to greet her. And actually a lot of time talking about stupid things I'd done, or someone down the road had done, which tended to make her feel better about how silly she felt, and resume her role as Superior Authority. ;) I think whatever relieves the anxiety and fear and regains some sense of control over this world that's suddenly all a bit wrong is really helpful.

But at this point it's hard to do because it's not just her that's adjusting to this, it's you, and playing along with your mum who was fine not so long ago is heartbreaking. It gets easier though, for both of you.

[speedy gonzalez]

Goat is right. You just have to learning to play along with it. The number of times we lied to Mr Speedy's aunt about where her mother or husband were (both long dead). We found she just became incredibly angry and frustrated if we told her the truth so we just became incredibly good at making up stories which she found easier to accept. I'm sure we would be very good improv actors!
Oh yes we also became very good at making up really random stories.

[Mountain Goat]

I also used to find that it helped to also deflect onto a pet subject. So if my dad wanted to know where his dad was, I might look at my watch and sigh and say, he should be here in half an hour, but they've got road works on Scartho Road again, do you know, it's traffic chaos. And then he'd take the bait and go on for 20 minutes on his favourite subject of Minor Traffic Delays in Grimsby 1950-2000 and forget all about what he was worried about. If my mum wanted to know why my auntie hadn't visited, I might say she was out shopping for a new fur lined mac, how many has she got now? And off she'd go, having a right good bitch about my auntie's excessive wardrobe. And most importantly, switching emotions from confused anxiety to confident certainty in a comfortable pet subject.

Of course there's a huge amount of context to all of this, this could be really patronising to someone more lucid, but the main thing is minimising anxiety, however that works for that person.

[kiwi]

I think nodding, smiling and then distracting is the official advice from the dementia organisations, but it's so bloody hard not to try and challenge or disagree with the person when at times they are perfectly lucid. Goat has it perfectly I think.

[Texaco Shirley]

I don’t think we’re quite at that stage yet but I can see it would be useful.

The memory test today was marginally better than the last one but overall the assessment wasn’t great. She’s still in absolute denial that there’s anything to worry about. She’s also very resistant to the idea of a brain scan as “it would just give her more to worry about”. I think she’s scared of having to admit there is something wrong and possibly go on medication. She has grudgingly agreed to a CT scan though, she’s too claustrophobic to do an MRI.

[Bendywendywoo]

I wish I had had Goat to advise me when I was struggling with my mum! She is completely right , there is no value in trying to correct her. I was an abject failure as a daughter when my mum was ill, no matter what I did I just seemed to make her more frustrated and angry (it was like being 15 all over again!)

I'm sorry anyone ever has to go through this, if I was given the power to eliminate one disease, it would be dementia.

[Texaco Shirley]

I just spoke to my mum and in the middle of an otherwise somewhat confused conversation she announced quite coherently that she’d decided moving nearer us was a good idea.

[Topcat]

Kind of good news?

[Texaco Shirley]

Yes. It would have to happen eventually I think and it will be much easier if she’s willing.

[Derek Nimmo]

Do you think she'd be open to assisted living or sheltered accommodation Tex, if not a home?

[Texaco Shirley]

I hope so. I don’t think she’s ready for a home but she’s a similar age to her mother when she moved to sheltered housing which I think might make it easier to accept.