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Dementia and Alzheimer's

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dealing with really upsetting visits to DF with DM

5 replies

medlarmeddler · 13/07/2021 12:32

DF has Parkinson's and now Lewy Body Dememntia as well as vascular dementia (and they say he's had mini-strokes in the past).

In March he deteriorated from walking with a zimmer and being a bit confused about how to send emails to being unable to walk and a catastrophic deterioration in cognition. He's in a home now and my mum is living with us (that's a whole other story, but its not easy!). He has deteriorated a lot and now can't walk, doesn't really sleep, crawls out of bed, and can be aggressive. When we visit he is by turns upset, falling asleep, telling us all the hallucinations he thinks are his reality now, and mumbling unintelligibly.

He had a traumatic childhood involving neglect and he now seems to be relieving this as living nightmares that he believes are true. It's really really heartbreaking. He was always an anxious man who found it hard to relax and enjoy things, and these traits seem to have multiplied exponentially with the dementia. He thinks that there have been murders in the home, police called, that he has been kicked and punched, that a tree fell on the home and they all had to evacuate. He also says quite explicit things to my mum when she goes on her own, imagines he sees naked women - and then is extremely upset and remorseful to my mum because he thinks he has been unfaithful to her (with imaginary people or people he's know in the past) and the other week he told me he thought i'd 'had sex with 12 men.'

Both me and my DM find this just really really upsetting to see. I know we shouldn't take the weird stuff to heart - which we do our best at, but the upset and the living nightmare he is in is just hell on earth. All we can do is say - 'Dad, that can't be true and you don't need to worry - it was just a dream', and try and talk about nice things. there just isn't anything left he can enjoy now; he was an intellectual who read the paper every day and read poetry and birdwatched until February. Now he can't have a conversation or read a letter his friend has sent him. We try and show him old photos but that is getting difficult.

I am in despair and so is DM; we really don't look forward to visits any more, but we make ourselves go every week. DM is so upset fo rdays afterwards, I am emotionally cleared out, and to add to this, my DM manifests her upset by being rude and aggressive about trivial subjects (how many cans of chickpeas to put in a houmous recipe anyone?) and upsetting me, my DH and the kids regularly without any understanding of the effects.

I feel like not visiting, but of course we have to while it still benefits him. I wouldn't wish it on anyone!

OP posts:
Pebble21uk · 14/07/2021 11:39

Didn't want to read and run - so sorry you are having such a terrible time @medlarmeddler... it is such a cruel and difficult disease!
I think having the Vascular Dementia does open you up to 'cliff edge' drops - where deterioration can be very sudden rather than a gradual decline.

I would be tempted to say that if you and your DM are finding visits difficult and your father is not really responding to them in a very meaningful way, to maybe give yourselves a week or two off. There is no reason you can't stay in touch with the care home staff for updates but maybe take a short breather for your own mental health? It sounds like you have so much on your plate with your mum living with you as well... you do have to put yourself first sometimes! Is your mum living with you a permanent thing? I think sometimes we really have to stop with feeling such guilt - easier said than done, I know!

My mum has Alzheimer's amongst several other significant physical health issues. She currently still lives independently as with my dad's help, my help and outside help, it's still possible at the moment. It's still very hard though - so goodness knows what it is like for you!

My Mum took too much medication last week (despite us doing all we can - taking control of dosset boxes etc.) I spent the whole of Friday night in a very busy & dirty A&E with her while they tested and treated her for an overdose! She's fine - but I can't let that happen again. Getting support is so hard though, especially when my dad refuses so much of it!

So - I'm sorry - I have no answers really, but I do understand. And I think there are a lot of us out there!

CMOTDibbler · 14/07/2021 11:55

I'd give yourself and your DM a break. It doesn't seem like he is getting very much at all out of your visits, and you and DM are suffering from them. Maybe you pop in every two weeks for a very short visit, and your dm once a month.
My mum was really upset by old photos btw - it was the pressure that she should know I think, so I had to keep things really light - like taking my sewing and just monologuing about that.

TheABC · 14/07/2021 12:12

Have an unmumsnetty hug from me.

It really is a bastard disease. Like @Pebble21uk, I would suggest taking a week off and stepping back from it. It's a marathon, not a sprint and you need to replenish your emotional strength for later down the line.

Could you make a recording of yourself and your mum, reading out poetry for him to enjoy? Likewise, if he enjoys birdwatching, perhaps you can send over some nature documentaries on the subject; Attenborough or the BBC's Blue Planet. The care home staff won't have time to fiddle with a streaming service for each resident, but they usually quite happy to put on a DVD. Likewise, you can play birdsong tracks and "nature sounds" that can be very soothing.

When you do visit again, I would put a coping strategy in place to deal with your upset, afterwards. Go for a walk where you can scream out loud, grab a punch-bag, kick a ball (I found lining up 12 footballs and viciously kicking them at an innocent goal to be really cathartic!). You know it's going to be emotionally draining and you want the best for him, but that does not mean you have to give the grief, guilt and anger houseroom afterwards. Your DF would not want that for you, either.

Good luck.

medlarmeddler · 14/07/2021 12:59

Thanks all, just off to see him now as family occasion, armed with cake, flowers from our garden, some jazz and some pictures!

OP posts:
BunnyRuddington · 18/07/2021 08:34

Just wanted to add our experience. DMIL has Vascular Dementia and started with delirium.

After having everything usual cause, like an infection, ruled out she's now on antipsychotics which have seemed to help.

I think that having a break from seeing him for a couple of weeks is a really good idea, the advice further up that this is a marathon rather than a sprint is quite brilliant.

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