Dad with dementia

[MisiSam]

Hi there , not quite sure what to say but I'm just looking for a place where people might understand I how feel!
My dad has been diagnosed with dementia, he is only 63 , although I suppose age doesn't make it any sadder or easier.
Does anyone have any advice on how not to let it get to you?
I try and visit once a week but I don't live close by and I don't drive so my husband takes me on the weekend. My dad is still okak, he still knows who I am ect, he will get my name.muddled with my auntie or my niece sometimes but then he sees things that aren't there and gets angry about things.
I'm just so sad about it all, I try not to think about him unless it's the day I'm visiting otherwise I will spend the whole day crying (I do suffer with depression and anxiety and i take medication for it) so I know that probably isn't a normal reaction for most people.
Anyway I try not to think about him too much otherwise my poor toddler wouldn't have much fun with a a sobbing mummy and I'm also 7 months pregnant.
I just feel guilty! I guess there is no way I can help my dad is there? He is just going to get.worse and worse and then die?
He lives alone and has carers 3 times a day and has a large extended family who watch out for him. Obviously it's much harder with lockdown.
Sorry for rambling on , I hope my post makes sense. Just looking for a bit of a hand hold I guess. Thanks

[JiltedJohnsJulie]

Oh I'm so sorry Misi. That sounds very hard to deal with.

What sorts of things do you like to do with him when you do get to see him?

[MisiSam]

I can't really do much as always have toddler son with me who he loves so that's good. He is a moaner and has always been like this, I have spent 33 years listening to him moan and now it's worse , I tend to just agree with whatever he says as not to confuse him , do you think that's the right thing to do? For example he's convinced certain family members are against him, (they are not) but rather than tell him that now I just say "I'll have a word with them" or "that's odd" If I stick up for them then he will get angry and I don't like it.

[MisiSam]

The lockdown, covid and pregnancy is making things harder as if it were normal times then I could probably do a lot more for him or with him.
He doesn't understand lockdown or covid so I can't just stop visiting completely it just doesn't seem right.
During the first lockdown he thought it was just him that had been locked dow and that Boris had called him and told him personally!

[JiltedJohnsJulie]

Yes definitely don't contradict or argue with him, he won't remember what was said but the upset of disagreeing with him may stay with him.

There's a thread further down about activities to do with someone with Dementia where the OP is in a very similar position.

How do you think he's be with doing some things together with your toddler like looking through some old photos, making handprint pictures or planting some seeds or bulbs for the summer?

[MisiSam]

Oh those are lovely ideas , thank you. I will check that thread. He has always been a bit morbid so looking through pictures will get him all depressed I think and then he will go on an angry tangent about whoever is in the picture (I'm not painting him in the best picture) but I adore him, promise! He has just always been hard work so I think it's hard to separate when it's the dementia and when its just him being ...well him!
Definitely walks when the weather is nicer he likes a walk around the cemetery

[JiltedJohnsJulie]

Sounds like this might have been coming on for a while?

Has he made any plans after he was diagnosed? Did he give you POA or has a Guardian been appointed?

Have you registered him with the Herbert Protocol too, just just google Herbert Protocol and the name of his local Police Force. It's a service to speed things up if he ever goes missing.

We had a tracker on DMILs keys but and also had the Herbert Protocol. We didn't need them for months until one week when she suddenly started disappearing and unfortunately her Dementia had progressed to the point where she no longer recognised where she lived so couldn't find her way back home.

[Notverygrownup]

My dad has dementia and loves it when we look through photo albums. Many of the photos are not him at all. I printed out photos from the internet of places he liked, and also people. We have a section on the Queen, and a section of dog photos, with some funny ones in. It gives us something to talk about and is a great distraction if he has got stuck on talking about one thing. I dig out the photo album and we can laugh at some of the photos.

It's a cruel illness, and tough to see someone you love going through it. However, you can build up good memories even at this stage in life, and enjoy doing things together.

One thing which I bought dad, which gave him a lot of pleasure, was a dementia clock. They are not cheap but helped him to be less confused at home. like this Though you have to remember to visit when the clocks go back and forward, as they don't change automatically!

[MisiSam]

Thank you some great advice here, my uncle is in charge of most of the "medical and carer type stuff" so I'll have to ask him.
That's great to know we can still make good memories, I think that's why I'm so sad because I just keep thinking that he's already gone in a way because I know the old him isn't coming back. I know that sounds awful but I'm just trying to be honest .

Yes it definitely has been coming for a while but it took along time to spot as he's always been very quirky even eccentric you may say so we didn't quite notice at first which we all feel awful about obviously. 😢

[JiltedJohnsJulie]

Please try not to feel bad, easier said than down when you're in your 3rd trimester, have a toddler, and it's your DF.

Would he enjoy some children's programs from when he was younger? Don't know if he's too old for Bagpuss or Fingermouse.

Just thinking that he and your toddler might enjoy watching a short program together?

[MisiSam]

That's a good idea about the children's programs! I'm looking forward to when life is somewhat back to normal (covid wise) and we can go out for a coffee or have a walk at least. It's nice to find people that understand.

[MereDintofPandiculation]

I tend to just agree with whatever he says as not to confuse him , do you think that's the right thing to do? Definitely. If you contradict him, he has the choice of thinking you're wrong or realising that his brain is failing. So he'll work very hard at showing you you're wrong, coming up with ever more fantastic stories. Even saying things to allow him to work out for himself that he's got it wrong may be distressing.

At the moment, dementia may be more difficult for you than for him. He's noting that things go wrong more easily, things don't work the way they used to. You're noting his cognitive decline.

[MisiSam]

@meredinto

This is very interesting thank you, that makes sense as he has come out with some fantastic stories and accusations that can't be true , sometimes I have to laugh. If you don't laugh you cry eh!

[JiltedJohnsJulie]

That's a very good way of exposing it Mere

[GooseberryJam]

I agree with agreeing with him. The kind of thing you're saying about the relatives is better than disagreeing in terms of his peace of mind. I reached the point with my dad where, when he asked me where my dead mum was, I would lie and say something vague about her being away at the moment or being looked after but she'd get better after a rest. Previously I'd said 'don't you remember, Dad, she died' and he would say 'I know' when he clearly didn't. But while I'd felt to start with I should tell him the truth, the fact was it didn't make him happier, it only upset him. Vague lies actually reassured him. Over time I became more secure that I was doing the right thing. Dementia puts you in a difficult position often. Best choice is usually either to agree, say something non-committal if you really can't, and or distract them - it's often like dealing with small children, where a well timed 'ooh, there's a squirrel!' or 'look, Coronation Street's on' gets you out of trouble.

Do look into getting power of attorney asap. You can get it done so it's only used when he eventually loses capacity, but it's much easier than leaving it too late.

Also, put music he likes on. My dad always loved to hear his favourite singers and reminisce.

[JiltedJohnsJulie]

So sorry you've been through this Gooseberry. DMIL has been asking for her long dead Mum for about 12 months.

If she ever asked me where her Mum was I'd say something like "she's gone to the shops but said we should do xxxx while she's gone" and then do whatever it was with her. By the time we'd finished the little activity she would have forgotten that she'd even asked. Like you say, it's a bit like distracting toddlers sometimes

[MisiSam]

@gooseberry thank you. Yes I had a similar situation. My step mum died about 10 years ago and when I called him recently he was upset that he couldn't get the washing machine working and she was working and wouldn't be back for ages. It was very sad , I just said I'm sure she'll be back soon which I worried was the right thing to say but I agree it seems kinder than to keep reminding him that she has died.

[JiltedJohnsJulie]

Is he starting to struggle with his washing now Misi? It might be worth keeping an eye on how clean his clothes are, and his bedding and towels.

[BadlydoneHelen]

I was going to ask ,like a previous poster, about Power of Attorney. If there is any chance of getting this sorted I would very strongly advise you to do so- from our own family's experience it will make things so much easier when the inevitable deterioration comes(however far away that may be). Sorry if this sounds brutal- it's not meant to be

[JiltedJohnsJulie]

I was going to ask ,like a previous poster, about Power of Attorney. If there is any chance of getting this sorted I would very strongly advise you to do so- from our own family's experience it will make things so much easier when the inevitable deterioration comes(however far away that may be). Sorry if this sounds brutal- it's not meant to be.

I don't think it's brutal, just very practical advice