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I want to reach out to my aunt but.......

5 replies

Featherpink · 05/03/2025 21:02

I need to get some help please.

I see a lot of disfunction with my mother who is in her 70s. My mind is leaning towards the possibilty of dementia however her memory seems to be somewhat good. What I see is behavioural and mood stuff and some other things and there just so many things not going right.

Every day is different and then sometimes she does have moments of clarity and sometimes she can understand things. Other times she's either flat or easily angered and every day is different. There are so many odd things and some obsessions and complusions and she doesn't talk to me properly any more. Like she will not have any proper conversation with me like - how are you?,.did you sleep well? What's your day like? How was xyz? Things like that. Instead she asks - did I hear from my brothers and that's her only interest in life.

There is just so many things that are off.

My siblings live abroad and when they are home they dont see anything wrong with her. You see her old habits and routines kick in and she focuses on minding them and doing everything for them but then she does act out behing it all to me and becomes easily engaged.

I chatted to her GP a few times but I got nowhere with any diagnosis. They did call her in for a check up but that's hard now too. She is defiant easily. Aside from that there is no progress with any diagnosis. They wrote me off citing 'any memory loss?'.

Memory loss hasn't been an observation as such. Unless I could actually say she is forgetting how to behave and converse.

My mental health is on the floor with this. It's so depressing. She can be challaging to be around at times and then other times she is ok. I have a housing difficulty and I live at home. I used to be ok and positive about this but it is so hard now. I am so so so so so depressed and withdrawn. I try not to show it but I am. I need help. I need a diagnosis. Rule dementia in or out. I think if I had a diagnosis it would be somewhat better in that I could understand more and i think I might be able to draw on supports like care for her. Also before she wrecks more and more of her personal relationships.

It appears as if the GPs don't care and they want to see her struggle more with day to day living tasks before there's any problem worth referring onwards for. I don't know what the GPs goals are. Or to try and treat her locally for as long as possible before referring into a hospital. She is somewhat ok with day to day living tasks like making her breakfasts and changing her clothes and laundry. Her diet is very limited now. I don't know if she cooks when I am at work. When we had some cold spells I noticed she was very poor with planning and organising. I wanted to get fuel for the fireplace but she was very angry about that saying the cold will only last for a week and they were will be into spring. She just presumed that February and march will be warmer months when I know from before that we can sometimes get some colder spells. She was angry about that but I also noticed that she's paranoid as if the chimney will go on fire and she spent most of her time outside looking up at the chimney.

She's just not behaving well.

But I am on my own with all of this.

I think her mother was likely the same. The only information I got from my mother about her own mother was that she was crazy in her old age and needed help in a nursing home. I asked my mother of she had dementia and my mother happily replied that she did but it was very mild because she never forgot.

What she said about her own mother goes to show that she never understood own mothers dementia because there's nothing mild about dementia when it's a progressive disease with the brain failing. Also this is a red flag towards a type of dementia know as FTD. Where memory can be retained but it presents with behavioural and mood stuff. Apparently according to Google FTD can run in families too. I would put money at this stage on this. I really think her mother had FTD and I now thing my mother has it too. My mother definitely has a cognitive decline but it's presenting with mood and behavioural stuff and other things.

I am in a very bad place tonight after the day I had.

I am really thinking about contacting one of my aunties to see if I could get any help from her. I know she was a nurse and she is retired now and she was more hands on with their mother too. But then I also have a massive fear too in that what if my aunt talks this back to the rest of their siblings and family and what if my suspicions are gossiped around the family and someone talks it back to my mother? This is the only thing stopping me from reaching out to my aunt.

OP posts:
Mollymalone123 · 06/03/2025 05:16

I think it would be a good idea to talk to your aunt as I’m sure she’d be more likely to help you with your mother.My DMIL had dementia and it was quite subtle for a couple of years and even though we could see changes in her, the other part of family that barely visited were in denial there was anything wrong.I realised that was more a guilt reaction later on as I think they felt they might have to ‘do’ something to help.We just didn’t listen to them as we knew what was what.It took two visits to gp and the little test they did to get her referral to a dementia clinic.We emailed dr and asked again and said can we book in as a routine health check so that DMIL would go.I doubt any gossip is going to get back to your mum and it sounds like you need someone who knows your mum well to listen to you

ItShouldntHappenToMeYet · 06/03/2025 05:37

It may be worth mentioning to the GP the familial FTD. My mum had lewy body dementia, which didn't present as 'usual' dementia. Memory was fine, but over the course of a few years, there were odd behaviours that were puzzling, but then a health professions suggested he may have lbd.
He did. Everything made sense. But I had to suggest this to GP as a possible diagnosis, because he was writing the behaviours off as nothing to worry about!

Featherpink · 06/03/2025 17:55

Mollymalone123 · 06/03/2025 05:16

I think it would be a good idea to talk to your aunt as I’m sure she’d be more likely to help you with your mother.My DMIL had dementia and it was quite subtle for a couple of years and even though we could see changes in her, the other part of family that barely visited were in denial there was anything wrong.I realised that was more a guilt reaction later on as I think they felt they might have to ‘do’ something to help.We just didn’t listen to them as we knew what was what.It took two visits to gp and the little test they did to get her referral to a dementia clinic.We emailed dr and asked again and said can we book in as a routine health check so that DMIL would go.I doubt any gossip is going to get back to your mum and it sounds like you need someone who knows your mum well to listen to you

Thank you. I will seriously consider contacting my aunt. I have another worry and concern in that I highly suspect that there's something running in the family and what if my aunt is showing signs of dementia within her own life and I don't know.

I might in touch and just meet up as a social casual thing and take it from there maybe.

It's so hard. The initial tests at the GP tests for memory and I am not seeing memory issues unless if there are memory issues and it's extremely subtle.

A lot of what you say does make sense.

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Featherpink · 06/03/2025 18:14

ItShouldntHappenToMeYet · 06/03/2025 05:37

It may be worth mentioning to the GP the familial FTD. My mum had lewy body dementia, which didn't present as 'usual' dementia. Memory was fine, but over the course of a few years, there were odd behaviours that were puzzling, but then a health professions suggested he may have lbd.
He did. Everything made sense. But I had to suggest this to GP as a possible diagnosis, because he was writing the behaviours off as nothing to worry about!

I know it's so so so hard and difficult isn't it. I do have an FTD information sheet that I will likely print out.

I am still not certain of FTD is running in the family but it does look like it. It's possible maybe my grandmother was diagnosed with dementia but maybe it was never labelled with a type. I don't know.

At the time that i was suspecting that something was happening I was able to provide a list of things like - like anger that didn't make sense, mood issues, poor comprehension, poor planning. As time went on there was more stuff and the most unnerving thing was taking my intimate items like underwear and they were appearing in her laundry every week as if she was wearing them. It was so stressful. I have the behaviour managed now by locking my bedroom when I am gone.

As time went on I started looking online and there sno doubt in my mind now that there is something happening and is wrongly suspected that it is dementia and I would lean towards FTD. Everything really does spell that out.

Its so so so hard to get any help or support and everyone is writing me off. Even GP.

OP posts:
ItShouldntHappenToMeYet · 06/03/2025 18:37

Featherpink · 06/03/2025 18:14

I know it's so so so hard and difficult isn't it. I do have an FTD information sheet that I will likely print out.

I am still not certain of FTD is running in the family but it does look like it. It's possible maybe my grandmother was diagnosed with dementia but maybe it was never labelled with a type. I don't know.

At the time that i was suspecting that something was happening I was able to provide a list of things like - like anger that didn't make sense, mood issues, poor comprehension, poor planning. As time went on there was more stuff and the most unnerving thing was taking my intimate items like underwear and they were appearing in her laundry every week as if she was wearing them. It was so stressful. I have the behaviour managed now by locking my bedroom when I am gone.

As time went on I started looking online and there sno doubt in my mind now that there is something happening and is wrongly suspected that it is dementia and I would lean towards FTD. Everything really does spell that out.

Its so so so hard to get any help or support and everyone is writing me off. Even GP.

Can you afford a private consultation with a dementia specialist? GPs can be spectacularly unhelpful. I'm so sorry you are having to navigate this minefield.
May be worth contacting Dementia UK or the Altzheimers society.
Best of luck. Take care of yoursek

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