How do you cope watching your loved one realise what’s happening to them?

[Neenaw20]

My mum has been diagnosed with a rare form of dementia (logopenic aphasia) which primarily affects her speech and cognition but not her memory until later stages.

I’ve watched her move quite rapidly this year from someone who was massively independent, chatty, & sociable to someone who struggles to get a meaningful word out. Her writing is also suffering.

Every-time I look in her eyes I see the terror of being locked in a body with no means of communicating. Today was the worst day so far and she is now refusing to try and talk and has just necked a bottle of red wine (she doesn’t normally drink). I am in tears. I don’t know what to do. It’s terrible.

She has been in denial until recently but it seems she can no longer deny what’s happening to her and it’s hit her like a ton of bricks.

I know I can’t make it right but I am finding it hard to see on a daily basis. Any advice on what I can do to help would be welcome.

I didn't want to read and run but I'm sorry that I don't have any answers for you. That seems like an incredibly cruel form of dementia even out of a field of horrible types. Sometimes feels a gift that my mum didn't know she had Alzheimers until it was too far in for it to mean much to her, a small mercy I am grateful for. I guess all you can do is be a presence for her, just quiet companionship, let her know she is loved and safe and looked after. IS there a chance you could ask her now if she would like to write some cards whilst she still can with basic requests/answers to questions? I'm sorry that I don't know enough about that type of dementia to know if that would work.

I totally agree, that does seem particularly cruel.

Are you getting any support for yourself @Neenaw20? Have you spoken to the Admiral Nurses?

I’m a bit late to this thread but my Mum is the same. The only diagnosis we have is Alzheimer’s, but at this stage it is mainly her speech that is affected. She talks but can’t find the words and her sentences are all muddled. It’s getting harder and harder to try and make any sense of what she is trying to say. Her writing is also deteriorating.
She was also massively chatty and sociable.
She gets so frustrated and it’s heartbreaking to see.

Apologies for the delay in responding, I have been really struggling to cope with the upset of it all so have trying to avoid even thinking about it.

No I don’t have any support. To be honest I don’t know what support is available. if you any details it would be appreciated.

I work a full time very stressful job, care for my mum, my 82 year old dad who has severe osteoarthritis and who has just been diagnosed with early stages dementia also and my 92 year old aunt. There doesn’t seem to be enough time in the day.

@lostinwales i have been working with mum to try and get cards etc sorted but she won’t co-operate. I spoke to the PPA dementia unit and was told that they would only be of moderate use. As her speech is failing, so will her reading and writing skills. Her cognition of these cards and their meaning will diminish also.

I do need to work out some way where she can try and indicate where she might be in pain and symptoms if she is ill. it’s my biggest fear that she will get seriously I’ll and not ba able to tell someone. She has a complex medical history which includes CLL leukaemia and it’s really important we identify any problems early.

@Inacountrygarden I am sorry to hear you are going through similar. It’s unbelievably difficult for all parties. My thoughts are with you. It sounds very similar to my mum. I would advise getting a referral to the PPA (primary progressive aphasia) rare dementia unit in Russell square London so they can advise on exactly what type of Alzheimer’s. It’s good to know this. I hope you are doing ok.

I don’t have any answers but just to say this sounds heartbreaking for you both, and family

Hi @Neenaw20, so sorry, it’s awful isn’t it. My mum has frontotemporal dementia PPA, and conversation has become more and more difficult. Physical touch seems to help my mum sometimes - just a hand on or around her shoulder, it’s the only time she’ll really turn and properly look at me these days.

You might like to look at the Rare Dementia Support site for help and support: https://www.raredementiasupport.org/become-a-member/

im sorry to hear this. My mum also has the same aphasia as your mum, she has gone from being a chatty person who spoke multiple languages to someone who struggles to speak and sometimes understand what is being said to her. Does your mum receive any speech and language therapy?

I'm a MH nurse who has worked with people with dementia in the past. I would suggest picture cards for indicating. The kind you get in PECS sets. Many people with aphasia find it easier to point to what they want and the ability to recognise pictures leaves them much later than, for example, reading. This also means that nothing needs "sorting out" really, I've linked some free printable ones below but lots are available to buy.

www.goldencarers.com/cue-cards-for-dementia-care/4744/

I'm late to the party but my husband has been diagnosed with PP Aphasia. His speech has been failing for the last couple of years and his normal, fairly truculent (at times) behaviour has got worse. He gets very frustrated and angry a lot and seems to obsess or fixate on things. He's always been a great talker and to think was to do...I once mentioned I'd like the hallway incorporated into my kitchen, an hour later the wall was coming down! It's frustrating for him and he now expects me to do the immediate jumping which I have to admit I find hard to cope with. Our relationship hasn't been the best over the last few years and I find it hard to empathise with his demands. Having said that I'm heartbroken for him and spend a lot of time in tears at the moment. I know there's
practically speaking, nothing to be done for him but it's hard to watch him getting more angry and frustrated.

I'm so sorry @neilyoungismyhero. It must be absolutely devastating for you

Hello OP. Have you thought about contacting Social Services for a care needs assessment for your mum, dad and Aunt? You would certainly be entitled to a carers' assessment, too. I am so sorry, there is no light at the end of the tunnel, and it's better to start getting the ball rolling on things sooner rather than later. Wishing you all the best.