There has to be an awareness campaign about dementia and the different kinds of dementia

[Pinkpro]

Within the past two years I became concerned about my mother who's in her 70s. I have a list of observations for the past two years that are all behavioural and mood based. Not so much memory loss. It's getting worse now. Like this morning - there's no structure to her household chores. Starting on one task and abondoning it in the middle to move onto another task. I have a whole entire list of stuff.

I found plus size period swimwear in her laundry even though she is not plus size and she doesn't swim.

Another time she came home from the pharmacy and she was so excited to show me what she got. She showed me two bottles of face serum. I started to ask questions about them because I know that's not usually her thing. She told me they were free and there was a sign in the pharmacy over a basket - Free - please take one.

I had doubts about it and I went into the pharmacy the next day and I saw no basket with free serums.

My mother also told me because they were free she took two of them and put them into her pocket. She didn't even go to the till for them to pass it through their system.

If it was free I suspect maybe perhaps as part of a promotion. I suspected she shoplifted from the pharmacy.

I have a lot of observations.

Time and time and time again I am coming up to a brick wall with everyone - with her GPs, with our family, and even when I reach out to my friends.

Time and time and time again everyone says it doesn't sound like dementia because she's not forgetting.

My understanding of dementia is that there's different types and the most common is alzhemiers which presents with memory loss early on in the disease. Other types of dementia presents exactly what I am describing - behavioural, mood, paranoia, and memory loss does present in those dementia but not until the later stages. So that's why so many people think dementia is memory loss. I think also many people are wanting to only see a particular type of memory loss like forgetting names and forgetting where you live - typical textbook style stuff. It's so much more than this.

I now I don't have a diagnosis for my mother but I would put money on a dementia with her. It's so so so so hard. I spent the whole morning babysitting her and monitoring her behaviours while she shoots around the place.

There has to be more awareness of dementia. I am locked in the bathroom crying my eyes out over the morning I had with her. She's completely obvious to what she's doing.

Can you contact your local Fire and Rescue Service and ask for a "Safe and Well Visit"/Fire Safety Check? Look it up online for your local Fire Service. This is the page for the county nearest to me: Safe and Well - Hampshire & Isle of Wight Fire & Rescue Service, Official website of Hampshire & Isle of Wight Fire & Rescue Service (hantsfire.gov.uk) They will send out a Fireman to check things like smoke alarms and household safety. They will also identify where things are unsafe or heading that way, and could potentially be a pathway for for advice, support or intervention from other agencies - you could brief them beforehand not to mention that you called them in and frame it as something that "the local Fire Service is doing generally, for all households in the area", to avoid drawing hostility/suspicion towards you from your mother.

Just a thought - it might be a way in? Sometimes "officials" or people in uniform can reach where even cherished loved ones cannot succeed.

I would suggest that when talking to medical people, don’t pre-empt their diagnosis by talking about dementia. Talk about her symptoms and say she is showing worrying cognitive changes. There could be medical reasons other than dementia that mean she is behaving this way.

And stop trying to fix things for her and focus on finding a way of moving out.

That sounds like a wise course of action. If you can, do try and get POA (financial AND health) sorted out ASAP - on the way before the summer if you can, before things get to a point when your mother might have less or no capacity. You could frame it as "I'm doing mine for myself, shall we save some money and get them all done at the same time?" - the Dementia Advice Line might have some other handy hints for this.

Yes, absolutely agree with this.

Agreed, DH's relative has a form where she get's terrifying nightmares and visions / hallucinations.

It is so sad to see a previously lively and vivacious woman now so scared and harrowed by what she is experiencing.

Whilst not minimising what some patients go through, I think I personally would prefer memory loss in comparison.

@Pinkpro I’m so sorry . You can’t reason with her . It’s her reality . I made this mistake many times when angry and tired . If she has dementia then her brain is dying . Trying to show them how something cannot be so is pointless . Or cannot be sorted It doesn’t work and you run round in circles trying to fix them , even though they seem fine my mum had damage to her occipital lobe which dealt with spatial awareness . For example I bought a dementia clock that was to show the time and day. She didn’t ignore it but later on I realise though she could see it was 1030 and Tuesday for example she couldn’t interpret it . She would write shopping lists in shaky writing but interestingly she could not read them back( I thought it was her eyesight and so did she .- logical right ? I read later it is entirely two different parts of the brain that deal with this . Her brain could not interpret the info any more . We had her eyesight tested it was fine but the brain wa scrambling what the retinal nerve saw . Wild . There’s some reallly good advice on this thread . Sending you all the best wishes in the world . X

My FiL (vascular dementia) accused his next door neighbours of stealing the utterly manky, splashed-on pedestal mat from his downstairs loo!

In fact SiL had taken it away and burnt it.

Alas, saying to any such person, ‘Why on earth would anyone want to steal such a thing?’ is useless. For whatever period - until something else replaces it - they have it superglued in their heads.

The stealing accusations are very common.

Something has changed in their environment eg manky mat has been binned.

They don't remember the discussion where they agreed to the change.

They don't remember they have a memory problem.

So why is the item missing? Clearly the only answer is it has been stolen.

My FiL angrily accused his next door neighbours of stealing the manky pedestal mat from his downstairs loo! In fact it was so manky, SiL had taken it away and burnt it.

It doesn't help that on every thread on here regarding odd behaviour in someone over about 65 posters will pop up suggesting it's dementia.

I agree with you OP that we need to reframe the language. You are concerned about your mother's cognitive function. Her ability to prioritise tasks, make decisions, act appropriately. Her personality has changed and you know something is not correct. She may or may not start to forget things.

With my dad, it started with more a general sense of confusion. He'd remember exactly what he'd done that day, but would put the milk in the cupboard and the teabags in the fridge, and would not realise that was wrong. He was confused about time/place - he would look at the clock and see 9pm, confuse it for 9am and wonder what was going on as it had been so long since breakfast. The forgetting did come but even right to the end he was clearly remembering things which happened decades before.

Everyone's dementia journey is different. I would advise picking up the phone and calling a body like dementia UK, speak to one of their advisers and explain what's going on with your mum. They will be also be able to arm you with the right language to use when contacting a GP about your concerns.

Good luck - do you have siblings or are you on your own with this?

Please get a doctors appointment then she can be seen by the memory clinic to get a diagnosis whether it is dementia or not. Waiting lists are quite long at the moment, everywhere, it is easier to claim Attendance Allowance and Carers with the diagnosis.
It took over a year to get from the doctors, to Neurologist to getting the diagnosis of Lewy Body Dementia for my husband. Strangely enough he started with an odd incident in M & S which we just put down to him not understanding how the Sparks card worked but now realised it was out and out shoplifting but not at the time. He accuses people of stealing his money, sees lots of people in the house that don't exist and we have lots of animals living with us but we have never even had a dog.
It is a hard disease to come to terms with and it is hard work for us carers who look after them.

This is what is happening with my mum. We haven’t had a diagnosis yet - all the tests keep coming back as “borderline” - but the shift in her personality over the last few years has been marked. She’s gone from a confident, relaxed, social person to an anxious, nervous one who barely leaves the house.

It’s heartbreaking to watch.

I agree. Actual memory loss was the last on MIL's list of "issues".

Lack of empathy was probably the start. She'd always been really caring, always asking about us and her grandchildren, noticing if we were looking tired or stressed, etc. Then almost like turning a switch, she showed nothing at all. If I said that OH couldn't come because he was at the doctors, or hospital (he has cancer) or was struggling after his chemo the day before, it was just as if I'd said he was at work - nothing at all! Never phoned him nor asked how he was. Really strange for her.

Lack of comprehension skills. She stopped being able to read a bill or a letter - she'd previously managed her own personal and household finances, but suddenly started showing us her post - showing us a council tax bill and asking what she should do with it, or showing us a bank statement and asking what it was! Likewise reading her daily newspaper - it had always been part of her daily routine, newspaper with a cup of tea first thing in the morning, but they started piling up, unread.

Same with "technical" things like how to turn up the thermostat for her central heating - it had been the same control for 20 years that she'd use on a daily basis, but suddenly she couldn't understand it and if the house was too hot, she'd turn off all the radiator valves, and then complain it was too cold when she turned up the thermostat (she could turn off the valves but couldn't turn them on again!).

It was really after 5-10 years of that kind of unusual behaviour that the memory loss started. Over all that time, her "World" had become smaller as she lost interest in things, stopped doing her hobbies, stopped going out, etc.

Fiddling with the heating controls IME is frequently an ominous sign of some brain problem brewing. Seen that quite a few times.

My FiL (vascular dementia) insisted that his neighbours had stolen the manky old pedestal mat from his downstairs loo! In fact my SiL had taken it away and burnt it!

An aunt (Alzh.) insisted that one of the staff in her care home had stolen a valuable ring. A sister and BiL happened to be visiting at the time, and searched thoroughly enough to find it - wrapped in a pair of dirty knickers in the bin!

Hiding things (and later insisting that they’ve been stolen) is SO common. So if any dementia is involved, it’s vital to check absolutely everything that could possibly serve as a container - old shoes, cornflakes packets etc. - before throwing anything out.

Although they had different types of dementia (Dm Alzh, FiL Vasc.) TBH they displayed much the same symptoms - short term memory loss and seriously neglecting personal hygiene, especially noticeable at first with FiL - in fact it was one of the first signs that alerted us. However he’d had a couple of mini strokes first - ischaemic attacks IIRC - which made his speech very garbled.

FiL however, was later prone to really violent rages if frustrated in the tiniest thing. DM never had the rages, but she went through a stage of being really nasty about family members - accusing them of various things (dh and dds selfishly ‘not allowing’ me to visit her, was especially upsetting. All behaviour that would never even have occurred to her before.