Elderly mother with possible dementia

[Effervescentfrothy]

I need some advice. My mother is 89 and has been showing signs of confusion and dementia for a while. However recently it’s become much more marked . She has set her oven gloves on fire twice and has been posting letters 1 am. Her WhatsApp messages are rambling and incoherent. She thinks people are stealing from her and she has massive mood swings.

The trouble is I have never got on with her and she says awful upsetting things s to me. I don’t enjoy spending time with her at all, and feel physically ill when I have to see her. She favours my sister who lives at the other end of the country and sees her for a few days a year. My sister and I don’t get on either . We have joint POA and I have contacted her doctor to say I am concerned about my mother’s wellbeing. My mother says they referred her to the memory clinic but she hasn’t had an appointment.
She has also had several falls.
She lives in a flat with stairs and things are getting to the point that she isn’t safe living alone. I don’t know what the options are or what to do. I live in Scotland. Can anyone advise?

Look in her local authority website to start the process of assessment and support
(e.g. www.northlanarkshire.gov.uk/social-care-and-health/older-people/support-and-services-for-older-people)

There's also a lot of helpful info here
https://www.agescotland.org.uk/information-advice

I’ve no idea what the situation is like in Scotland but I would let her GP know the issues you have highlighted here and ask them to get social services involved as she is a safeguarding risk (that term generally gets them hopping about!)
because if anything were to happen to her or others in the flats around her it would be a nightmare.
Put all this in writing so you have evidence and a time line.
The memory clinic thing is a waste of time in my opinion.
Good luck.

Why is the memory clinic a waste of time? It will be the first step in getting a diagnosis. Some people do manage to pull it together for the memory clinic and avoid a diagnosis, but I wouldn't say it's always a waste of time.

Hi
My mum set her house on fire, was a clean proud woman who went from that to refusing to shower, forgot my dad had passed, was mistaking fabric softener for milk and on and on and social work still refused to help me until it reached crisis and she was sectioned. Even then after assessment they wanted to send her home, I am also in Scotland so feel free to message me and I will try to help you navigate the sh(t show! Sending love.

Oh God. That’s truly shocking. Thank you.

The memory clinic was a very positive thing for my family member , it gave a definitive diagnosis which then opened up support systems including financial help such as attendance allowance which is not means tested.
Also when diagnosed with a dementia disease the person then qualifies for 100% free council tax ,backdated to the date of diagnosis.
There is usually a long wait for the test sadly in some areas.

I can;t imagine why there is a long wait for a memory test cos it only takes a
gp about 15 mins. But no, it isn't a lot of help in most cases. My mum had one after all who knew her knew she was demented and she scored 100% even on the mathematical questions which I thought she would fail badly. It was abt 3 years later that things came to a head when a kind motorist driving home after a late night out spotted an old lady waiting at the bus stop at 3 a.m. and reported it to police. Mum thought she was off to the hairdressers!

Try the website Dementia Support Forum, it's full of help from people supporting rellies with dementia. It's like mumsnet but obviously for dementia advice.

I don’t know where you are in Scotland, but in Edinburgh we were told it’s taking a year to get memory clinic rdv 🙄. Getting a diagnosis is important because it opens the door for certain assistance etc. Personal care is free to the user in Scotland, this is help with eating, drinking, washing and dressing, taking medication etc.

But it sounds like your concerns are more about safety? The fire incidents are very worrying. Did you tell the GP about this very clearly? And did you get a response? You need to follow this up. Ditto for social work - she urgently needs an assessment. You can tell them that you don’t want to be involved in her care but you do need to kick the process off.

A year! That’s awful! I phoned social services yesterday and also emailed her doctor. I don’t think my siblings are very happy with me because they don’t face up to what is going on.

For us, FIL went wandering and had a bad fall, ending up in hospital. The dr there gave him what she called a ‘preliminary’ diagnosis of dementia - this meant we could organise care for him on that basis. His rdv at the memory clinic did take a full year to come, and he was officially diagnosed with early stage dementia.

Do you have more than one sibling? Are any of them local like you?

From personal experience in Scotland, DM actually got an excellent package of 4 x a day carers but that was based on physical issues. DF also had memory loss ( probably dementia) and I would focus on the elements that put him at risk when you talk to social services rather than the memory loss itself if you want additional support. So with DF it was the fact he was forgetting to inject his daily insulin that got a daily trip from a district nurse to do it, I said I was unsure if he was eating regularly so carers were meant to check what was in the fridge, throw out the out of date stuff and prepare meals - sadly they didn’t because he wouldn’t let them.

Unfortunately dementia is a progressive and unpredictable disease. Thankfully both DPs now in a care home near me because they are self funded and the minute they agreed I could get them in. I would try and figure out your DMs finances, if she has more than two years of care home costs in savings ( around £200k) then it means the decision is within the family.

Please also remember that you did not cause the dementia and you cannot fix it. Ultimately you have to put yourself first.

I’m pleased to read that some of you have had positive results from memory clinic appointments.

My own experience and the experience from others in my local support circle is that they are not comprehensive enough and are all too willing to fob you off as long as they’ve ticked the box.

My own father was always in denial about his dementia and could mask when required so after his appointment at the memory clinic he was told he just had normal cognitive decline due to his age.
There was no support, nothing and no follow up contact.
We really had to make ourselves unpopular with his GP to get any help.
A scan revealed mixed Alzheimer’s and Vascular dementia and the only thing that happened was his driving licence was revoked.
An Alzheimer’s charity would ring occasionally for a catch up chat but absolutely no other help either practical or financial was ever offered.

It's a waste of time because it changes nothing. Putting a label on it and getting a diagnosis won't change the symptoms, and won't address the practical concerns that the OP has about her mother falling, setting the oven gloves on fire, or sending rambling texts.

@Effervescentfrothy we went through similar with my Dad although he was a decade younger and had my mum looking after him. You don't mention anyone living with her so I am assuming she is on her own. The advice about writing to her GP is solid. Every council area will also have a social work helpline which you can phone and speak to a social worker about your next steps and what support may be available. Wheels may move very slowly though as social care is overwhelmed and underfunded.

i wasn’t directly involved but I remember DH and the social care coordinator for his dad both saying that the written dementia diagnosis in his notes made it easier to get care put in place for his dad, especially longer term. It proved that he wasn’t just temporarily confused but that he had a neuro-degenerative condition that was only going to get worse. For the OP, if her mum is diagnosed, then it cuts through a lot of the waffle if she can just say that her mum has dementia.

But it must be very frustrating to be trying to help an ageing parent who’s clearly going downhill, and they ace the test 🤷‍♀️. All I can say is that the memory clinic diagnosed MILs Parkinson’s and related dementia, and FILs early stage dementia, and it helped get services in place for both.

I have emailed the doctor and phoned social services so that’s really all I can do.