Worried about mum

[Kitta]

Hello, I hope this is the right place to post. I’ve been looking for answers for what might be wrong with my mum, who has had occasional episodes of what seemed like psychosis; a couple of years ago when she was caring for my dad who died at home with palliative care, and then recently she had a fall a few months ago. She was briefly hospitalised (which stressed her out a lot) and found to have a heart issue - Atrial Fibrillation I think it was called, and she was put on some medications (for the first time in her life).

She had an amazing recovery from the fall (physically) and from this shuffly walk she’d had, and seemed to be so much stronger, but I became quite alarmed because it seemed as if what had previously been general memory loss, with these occasional episodes (including hallucinations) - well she suddenly seemed to develop extreme dementia, within a week.

I couldn’t believe what was happening to her, the physical improvement declined back to worse than before and she has been having almost constant hallucinations. I thought it might be a reaction to one of the heart drugs she’d been put on, but that has been stopped for a while now and although abated for a while, the hallucinations are now back with a vengeance.

Sorry if this is too much information for a first post. It’s just that I found this forum and I’ve been reading about Dementia with Lewy Bodies (I think this is the name of it), as you can see I know nothing about this, but I’ve been trying to learn because Mum refuses to go to the memory clinic, and has found to be borderline on the Alzheimer’s tests she’s had. So she thinks she is ok. But she is not at all ok and I am beyond worried about her. I read about the symptoms of DLB and so many ticks there for my mum! The night terrors going back for years, the shakiness, apathy and depression - Mum was previously so happy, energetic and busy. Now she is a shadow of herself. I’m hoping to learn more here about how to help my mum and to find out more about dementia - i in no way could possibly know if she has this illness or not, but it seems uncanny that so many symptoms match my dear mum and her decline in the past few months.

I don’t really know what to do next, whether to try and get a diagnosis for her, but she doesn’t want to think about it of course (so how...?), but there seems to be a wealth of information here and kind and supportive people, so I’m really happy to have found this forum because I’m feeling a bit out of my depth.

 

[karaokePete]

Hello @Kitta, welcome to the forum. You have come to the right place for information and support.

I think the right thing to do is pursue a diagnosis. Some members have succeeded in getting this by contacting the GP with an outline of concerns and then getting their parent called in for something like a well woman check-up which can include a dementia check. A diagnosis is important as it can open up support if dementia is involved, or treatment if something else is at play.

You can learn a lot by having a good read at old post on the site and then there’s a great publications list available that can be found by clicking this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

By the way, your post was, indeed, in the correct place. If you have ongoing questions you can post them in the sub-forum that can be found with this link https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/

 

[Timebar]

Hi Kitta

You have my empathy, I can understand your worry. Perhaps I can share my experience of getting a diagnosis for my MIL.

We became worried and suspected dementia. We sent a long email to the GP outlining our worries and ask that they call her in under the guise of a meds review or something. She attended but became quite angry, storming out when the GP asked her to draw a clock face shouting and creating quite a scene apparently.

Fortunately this behaviour tallied with our descriptions of her rages and the GP referred her to the local NHS mental health trust. A few weeks later she then received a letter from their Older Person's team who wrote with an appointment saying when they would visit her. The letter said she could cancel the appointment if she telephoned them.

Fortunately MIL is long past reading the detail of any letter. So I was able to pass this off as an "older person's health check-up" or something similarly vague. She didn't think anyone would turn up on the appointment date and promptly forgot about it. She won't use the phone and I told FIL not to cancel the appointment if she were to ask. (Not that I think he'd pick up the phone either). I made myself available on the day and a very nice lady showed up. MIL gave her permission to speak with me.

She carried out the ACE III test and MIL scored low in all areas. 59 in total, when it should be into the 80s. She told me verbally when I showed her out that she thought MIL had Alz, but she had to consult with the psychiatrist. She returned a few weeks later to confirm the diagnosis.

MIL not happy, and we're currently struggling to get paperwork sorted out. But that's another story.....

I assume you would need a GP referral to get passed on to your local NHS Mental Health Trust.