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.

Oh bless you. I know nothing about dementia types. That sounds so hard though. DFiL just likes to sleep, doesn’t care about anything much, or remember anything much. He’s fairly cheerful, except when DMiL who has a mixed dementia diagnosis gets obsessed about what he’s eating and tries to make him do things because he shouldn’t just sit there.

DM is losing words, can’t process new information and won’t give up on using tech. BT have sent her several new Wi-Fi routers/tv boxes because she says they aren’t working. I spend ages on the phone helping her find the @key on her iPad. She gets angry because the emails and texts she sends/receives don’t arrive.

It is tough. and frustrating.

The best way that I can describe things that I am observing is that it's like her brain or mind is short circuiting and tripping because there are times when she is ok but then there's either times and she's not right. It's all behavioural and mood.

It could be any number of things. Can you offer to go with her to the GP and explain your concerns and ask what they can do to help?

With the GP, it isn’t good enough to say it’s not dementia- they need to do tests and work out what it could be.

Have they suggested anything?

My mum has Alzheimer’s and memory loss was not one of the earliest symptoms, personality change, anger, anxiety, withdrawing socially happened beforehand.

Has she actually seen the GP with a witness there?

It could be a mental health condition or a combo of one and a type of dementia.

Even in Alzheimers memory loss isn't necessarily the first symptom.

With FIL he started giving up his hobbies because he couldn't initiate an activity. He also started worrying about his health as he couldn't recall reassurance.

Unfortunately neither of these behaviours were massively out of character for him so his family didn't notice until the changes were overwhelming. I suggested he had dementia the first time I met him and was told he was always odd.

I think he had always been odd but it took a stranger to point out something wasn't right.

My mother has fairly advanced dementia and I'd still say memory loss is the least of her symptoms.

The one that triggered diagnosis was slurred speech. Preceding this, before we realised, was years of total apathy. Like couldn't be arsed-ness. I found it really hurtful as it seemed as if she had no interest in my children nor could be bothered to make any effort. She lost interest in all the things that had mattered to her beforehand, including my father. She also lost any ability to organise finances or use technology.

Now the worst thing is her physical deterioration (can't walk), but she can still remember really quite a lot. But her speech is better.

I'm constantly googling symptoms to try to work out if she's got a different sort of dementia as it feels so atypical.

Apathy is such a big deal in most types of dementia and massively underappreciated.

No your relative isn't doing it on purpose, they really can't make a decision. Any decision Even a tiny one.

@SpaSpa
my mum was the same

It could be a mental illness rather than dementia. I'm assuming the Gp has at least done tests to rule out UTI's? Have they referred her for a head scan?

Google teepa snow - she is really helpful & engaging especially in dealing and reacting to dementia behaviours . My mum had vascular dementia from a stroke damage - to the outside world she could present really well . She could mask and do hostess mode no problem for years . But she would often “glitch” , believe she had a duplicate house , relatives were not who they were, all sorts of fun and games until more typical features of “ dementia “ appeared . At times it was as comic as it was tragic . My favourite story was the “buffet” she once prepared for non existent guests . Ultimately how you perceive time & space is governed by your brain . She couldn’t comprehend how she could not fit a huge dining table into a tiny galley kitchen but she could tell you who the prime minister was right up the last few months of her life . It’s really hard until you’ve lived it . I nearly lost the plot too !

The pharmacy face cream thing may not have been stealing but your DM inventing a story as she now realises it was an odd thing to buy.

Keep an eye that she doesn’t get ripped off by people. I found even my DM’s ‘friends’ took advantage of her, it was heartbreaking.

Does she have POA in place, if she doesn’t this is the time to push for it?

I’m sorry that does sound distressing for you. It’s horrible seeing our parents like this. What does the GP say? Have they done any tests?

My mum has frontotemporal dementia and it has not been like the ‘typical’ dementia symptoms you’d expect. It was mum’s ‘conflabulation’ that the GP picked up on during an initial memory test and then she referred her to the memory clinic. Mum could answer questions about dates etc but couldn’t understand questions that were a bit more abstract.

what I wanted to add if your brain is damaged or doesn’t work properly then it affect so much more than memory . My mum did the confabulation thing too . The classic is when people think someone is stealing from them and they lose stuff but my mum came up with all these stories from the past how I had broken antiques in her old house . This article doesn’t have any advice but always struck a chord with me . We struggled for nearly 16 years with mum easily looking back and her behaviour & apathy when easily another decade before that too

https://amp.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia

An awful lot of elderly people who have dementia don't get a diagnosis.

Where there is a diagnosis there isn't necessarily help offered.

If your mum needs support then it's possible to apply for attendance allowance and arrange for private carers however the tricky bit with someone with dementia is persuading them that they need carers.

I'm sorry, it's a hard journey.

I worked as a care assistant for years and the stealing (them losing things) is a classic. I witnessed lovely old ladies accusing their also lovely DIL’d of stealing all their towels. Once someone accused me of pinching their tea clothes.

My mum had FTD and her early symptoms were behavioural and loss of language. In fact it was a long time before you'd have noticed memory loss as such - she could tell you the prime minister, but not name a cup (nouns went first). On her memory clinic assessment she borderline passed the general dementia screening test, but when they used the test more specific to FTD (as I was able to describe her issues) she absolutely tanked it.
It was frustrating as (well meaning) people would suggest things like looking at photos as an activity, but as her visual processing was gone, they meant absolutely nothing to her and made her angry. Much the same with music apart from very short (30s or so), very well known bits - she loved a toddler press the button for music of the Nutcracker for a long time, but seemed massively frustrated otherwise with music

Hi Pinkpro, sorry to read about your mother here and on another thread. It must be very worrying and upsetting for you. If she won't go to the GPs or engage with other outside help, sometimes - regrettably - you have to step back and let a crisis happen. Only then can steps be taken. You can report your concerns to the various people like Social Services, the GP, etc., but if your mum is deemed to "have capacity" then they won't intervene.

The Dementia Forum UK is very helpful and may be able to assist, whether or not your mother has an official diagnosis, may be suffering with a UTI, or whatever else is going on. They can be found here: Dementia Support Forum (alzheimers.org.uk). They have an excellent online forum and telephone advice service.

Wishing you all the best. Do remember to look after yourself in all of this - you can't set yourself on fire to keep your mother warm. Unless you live with her and her actions and choices are putting you at risk of harm, you might have to let her get on with it or explore moving out (even if only temporarily) for your own safety. I appreciate that's not what anyone wants to hear. Look after yourself and maybe give the Dementia Support people a call. x

So much of what I am reading here in the replies is what I am observing:

• episodes of no conversation or just flat one work responses to me.
• spacial awareness- moving furniture around into places where it just doesn't fit and not only furniture but other spacial awareness issues. Struggling to fit a small appliance into a small bag and anyone would have been able to see by looking at the appliance and the bag that it wasn't going to fit into the bag. She reminded me of toddler playing with toys and figuring out spacial awareness.
• her comprehension is waning
• some obsession and OCD stuff
• this week - moving a failing appliance into rooms and plugging them in elsewhere to see if it will work somewhere else - and dragging heaps of appliances around the home in her mission.

There's so much.

I keep getting denied with every direction I turn to. Friends tell me that she seems to be ok to them.

I do live with her.

I don't know how I can afford rent else where but accommodation and rent is so bad where I am and limited.

She's been dismantling vents to the home and leaving wide gaping holes in the walls because she's paranoid of fires.

Regarding the dismantling of vents - she has no comprehension that it's going to be an avenue for rodents entering the home.

I am not able to reason with her. I find now that I am struggling to sleep at night because I have to fix things when she is sleeping and brainstorm on scenarios and lies to ease her responses and moods.

Oh no! That sounds awful. Are you accidentally covering for her? You need to avoid that, which you may subconsciously do.

Don’t assuage her in things that involve others- arrangements etc- so they get to see what’s what. it’s really easy to unintentionally mask the problem.

Yes, I was helping her a lot so far at home. We are due visitors this summer and I am going to step back and not intervene. My mother has poor planning and organising and spacial awareness and she's made a mess of the spare room and I can't see how she's going to get it done in time. I am not going to step in and fix this. I need to take a step back so they can see what's happening. I was make myself scarce for the summer so that I won't be a familiar face to my mother.