Intro from me - Father with PCA

[gertrude]

Evening

I thought I should finally register as despite having read these forums for a while, somehow I didn't feel I was relevant to here. But after this evenings phone call with my Dad, I need to ask some questions to people to try to understand where we're at.

My Dad has PCA, he experienced a couple of crises a couple of months ago which necessitated him moving into a care home (was living alone).

He had his diagnosis a year ago or so, but in the last 6 months he's deteriorated very rapidly. So much so his consultant thinks we're looking at (a guess) of 1-2years. Now, as much as I don't think that's true, this is also the consultant who was spot on with the diagnosis long before any one else was so I am inclined to think he knows what he's on about. We went to Addenbrookes to confirm his diagnosis so we're confident with that.

Anyway, he's quite poorly - physically he's experiencing neglect on the most affected side and his memory is awful. His vision is now very affected though he doesn't always understand his vision problems aren't his eyes but his illness. He hallucinates and he mistakes his reflection for someone else (a young boy).

BUT the thing that has triggered me to finally register and ask questions is this - with PCA (and AD I guess), is there any logic to the time line they mistake reality with? I've just had a very distressing phone call with him where I think he thinks he's at school. I just wondered if there was any logic at all (ha!) or not.

Also, is it common to perceive people being against them ("not wanting people like me") or is that individual specific?

I hope someone can answer - I'm just trying to make sense of the latest stage and as it progresses I'm finding it harder and harder. He's moving to a home nearer me soon so I think that will help (I can keep an eye on everything better) with my understanding but, I don't know, am feeling very out of my depth tonight

I'm not even sure I'm making any sense either now - my Dad's phone call has completely blindsided me and I'm trying to work it all out.

If I'm missed something really useful please ask! He's 64, which is just a bit rubbish really

 

[eastiesgir]

I welcome on board. Before I start can I just say I've found this forum to be a vital part of my life in the past few month since I joined, I hope you find lots of help and support here too.

I can't really comment on PCA, I've not had much experience of this, however, my mum has alzheimers.
I have found there is no logic to how mum thinks anymore, her timelines are way off the mark and she can flit between many different eras of her life in minutes. She has for example completely forgot the past 11 years of her life. She has no memories of this time what so ever.
The idea that people are against them, is again something I have come across with my mum ( and other posters on here mentioning) so I would dare to say it is a common thing.
As for being blindsided with it all, that is very normal, I am trying to come to terms with it all, and it is (as many will testify) a roller-coaster of emotions.
I know I've not been much help, but there are lots on here who can help far more than I can.
take care
x

 

[gertrude]

thank you it helps to hear other peoples experiences, shame we have to have them though

I hear you on the rollercoaster of emotions - just when I think I'm getting there something happens that throws me so much I doubt I can cope with this. The thing is, I'm fairly sure if I ring him now he'll have forgotten any of what he said to me but it's always a concern people actually are against him you know?

 

[eastiesgir]

I can fully understand what a worry it is. Mum is convinced everyone hates her where she lives. We have however seen her sitting with people and talking to them etc, and yet she will tell us 10 mins later that she claims that they don't like her and never talk to her. Can you talk to whoever is in charge where your dad is? I found talking to the warden in mums place put my mind at ease.

 

[gertrude]

I can fully understand what a worry it is. Mum is convinced everyone hates her where she lives. We have however seen her sitting with people and talking to them etc, and yet she will tell us 10 mins later that she claims that they don't like her and never talk to her. Can you talk to whoever is in charge where your dad is? I found talking to the warden in mums place put my mind at ease.

So it is a common thing then?

I did ring the care staff tonight and ask how he'd been (just said he was a bit agitated) and they said he'd enjoyed his tea and seemed fine. I'm trying to resist calling him again.

He's moving to a new home on Sunday so I'm just going to hope the next 48hours are as calm as possible *crosses everything I have 2 of*

 

[eastiesgir]

I'm no expert but paranoia of various forms, does seem to be a common thread. If he is moving on sunday, I would be tempted to leave it till the move is over. Maybe have a chat with the new home and explain what has been happening. Mum is in sheltered accomodation so it is a slightly different situation, but I would guess that most staff would be happy to talk to you about any concerns you have.
Good luck with everything on Sunday
x

 

[PostTenebrasLux]

Pca support group

Welcome Gertrude to TP

First, have you seen the PCA support website? The only one in the UK? http://www.pcasupport.ucl.ac.uk/
Believe it or not, the next meeting is 18 November, albeit in London, but if you could make it I would hope you get instant support and advice - but do make yourself known before you go and introduce yourself once there - it can make all the difference.

Alas, PCA is such a "specialised" and unique form of dementia, which starts off as an individual form but towards the middle of the disease merges and blends in with Alzheimer's characteristics, of which it is a sub-section.

When my cousin was diagnosed, in 2003, she was the 44th known case in the UK, her symptoms having started in 1999. She is still with us, though only just in her present vegetative state, now aged 66. I would be happy to answer any PCA questions you may have. I have written an account of her journey in the as yet incomplete blog mentioned below.

The hallucinations and return to other eras is the merging with Alzheimer's which, from your description, I recognise only too well. Dealing with reflections (of self) of other persons present can often helped by closed curtains, not seated to view windows and reducing "shiny" surfaces which "glare" and cause distress (putting down a mat helps a little). The experience becomes overwhelming and frightening in shiny, "spic and span" bathrooms where everything is gleaming, including the lavatory, the use of which can cause unnecessary anguish...

Gertrude, do a "PCA" or "posterior cortical atrophy" search in this Forum and you soon find some support I hope.

Do let us know how YOU are coping -can music soften the atmosphere for your oh so young father? Try music from the 1960s - should be "comforting" by its familiarity - and also helps singing along - often memory is better retained for the lyrics of songs than for conversation.

I look forward to reading your posts.
Best wishes,
Martina

 

[gertrude]

Hi Martina - many thanks for your reply, will read your blog shortly.

Dad is displaying many of the "traditional" symptoms now too I think - certainly his consultant thought he was on a very fast slide now. We're not sure why but the last 6 months things have gone down hill VERY fast.

As for me, I'm not coping - only I don't have the option to not cope do I. He's my Dad and he needs me fighting. Every day though I get a bit more worried about when he's not here any more. I'm a strong cookie by nature but how long can that last? Who knows. I'll certainly keep the gin companies in profit that's for sure (tbh I've started doing that a while ago). My brother is amazing though and I get a lot of strength from him (even though we're miles apart in personality), I just hope I help him as much.

We had already taken away reflective surfaces (though his soon to be home don't seem to understand how important this is) from his current home and we know it was this constant reflection that caused his crises. It's hard though isn't it - trying to be ahead of the curve of what's next, I hate always being responsive rather than ahead of it.

 

[tre]

My husband has PCA

This is so difficult. It seems to hit people at a young age- my husband was 67 when he was diagnosed four years back and I think had symptoms certainly from age 63 or 64. The support group in London is brilliant which is probably why people attend from as far away as Cornwall so if you possibly can do get in touch.
I imagine it must have been very difficult for your dad living on his own as people who have not experienced PCA find it very strange for example my David can read isolated words of small print but not the large print headlines. He cannot read blocks of text at all. The visual impairments also make it very isolating.
The way I get my head around it is that my husband's vision is as if he was viewing everything in a mirror that had been smahed and stuck back together like crazy paving but with the pieces not flat so that you see little glimpses in detail but not the whole picture. He cannot see to locate a cup on the table but can see quite small moving objects such as a fly or aircraft especially if they are not against a busy background.
Another difficult thing is that although he has hallucinations and delusions he also is aware of his condition so he will say what he sees/thinks and then say " no that's nonsense- I am going mad". I think this insight makes the condition very frightening.
Tre

 

[gertrude]

Thanks Tre I don't think my Dad has that insight tbh. He told me today he's getting lots better