AIBU to worry MIL may need a GP check for dementia?

[illiads]

MIL is mid-70s. Over the last couple of years we've noticed some changes, but it's definitely become more noticeable over the last year. DH thinks she could be showing early signs of dementia. We're starting to worry about what the future might look like, and whether it's sensible to leave the DCs with her.

It's not really the memory side of things that's making us question it. It's more that the gap between what you'd expect from her and how she actually behaves in public and at home seems to be getting wider. Nothing huge or dramatic, just lots of little odd things that individually you could explain away but together they don't feel quite right.

She's still working and has never slept much due to her work commitments. From what I've read long term lack of sleep can increase the risk of dementia although obviously I know that doesn't automatically mean that's what's going on.

Just wondering if anyone has been through similar.

At what point did you or your family decide it was time to get your mum or dad to see the GP? How did you approach that conversation?

What were the early signs? And were there things you only realised were symptoms after they were diagnosed?

Trying to work out whether we're overthinking this or whether it's worth gently encouraging her to get checked out and how to go about it.

I thought I was in The Dog House board, the way SOME people in this thread are talking about a woman who still works FFS!

"If you haven’t already get POA set up." - WTAF!

Didn't find there was any help or support, so pretty pointless. Made sure there was space in the house she could easily come into when necessary (like most, we've no spare room as such, but we got organised so we could easily put the kids elsewhere etc, as hospitals trips/periods they need to come to you for recovery amped up). Also checking out work policies about emergency carer leave/comparing any flexibility you/partner/family and friends etc is a good idea. But I never found the authorities (health/council/social services) the slightest bit of use.

What do you mean?

It’s actually wise to get POA set up. Not necessarily just when someone is showing signs of dementia.

Sorry to head you didn’t get the support you needed. May I ask: what do you mean by “periods they need to come to you for recovery”?

God knows!

Agree. I have given my mum POA

My DH called MIL's GP first and gave them the heads up then GP got her booked in for an appointment.

MIL was really bad at not focusing on what we were meant to be talking about so it was handy for DH to explain all her odd quirks over the phone before GP met her F2F.

We're in a rural area and found that quite simple as GP had the time to do that for us.

Once all arranged, DH sat MIL down and said he was taking her to GP as he was worried she didn't seem quite right and she was fine with it. Guess it won't be that easy for everyone though. MIL quite liked being fussed over by NHS as well for some weird reason!

@KaleidoscopeSmile better to have POA early than too late. You don't have to have it active just registered. Didn't get one in time for DF, his capacity suddenly fell off a cliff. Got one for DM straight after that. She saw how horrendous it was trying to sort things without one. She now has dementia, although on good days does have capacity. We got finance POA to be active straight away, but you don't have to. We have also got POA for MIL who is younger and still very active, no capacity issues at all. We have registered but not activated her finance one.

Thanks for sharing and i’m sorry to hear that you had to go through that.

Contacting the GP in advance seems like quite a common way to help family members. Doubt anybody in her family knows who her GP is though. She’s a very, very independent woman.

Would it be unusual for people to self-refer either after suspecting dementia independently or after being told by their family that they might have it?

Our early signs ( although we didn’t know it then) were problems with mobility, spatial awareness and dizziness. People always assume the forgetting comes first but with vascular it can be mobility and imcontinence problems. The second feature was heightened anxiety to an extreme degree

Thanks for sharing and sorry to hear about it.

Since you mentioned dizziness I’d like to ask whether there were any issues with blood pressure?

And when you say anxiety to an extreme degree, what do you mean?

In terms of self referral based on my experience (both parents unfortunately 😢) no. They will dismiss it as just being a bit forgetful, part of ageing etc. also an element of “well even if I did have it nothing can be done” (which isn’t wholly - true there are a couple drugs which may slow progression in some people but ultimately it only goes one way sadly).

Someone further up thread mentioned that there can be other causes such as vitamin deficiencies and GPs will do blood tests to rule those out / treat those as needed. However for my mum it also gave my parents an excuse to not face up to the reality for even longer. So although my mum did have Vit Deficiency she also had early stage Alzheimer’s but because she’d had the pills for the vitamin side they dug their heels in about there possibly being other things at play.

GP heads up definitely is a good way to go in my view. Both times with my parents I sent an email explaining who I was, that I knew they wouldn’t disclose any medical information (although referencing that I did hold LPAs if needed) and then explaining the concerns and providing examples. I think I gave a range as well so talked about looping round a conversation a few times, getting confused by things they’d done previously, anxiety etc.

There is a great Dementia & Alzheimer board on here as well with lots of people who have had parents go through this and are an amazing source of advice and support

Small example - really panicking about Christmas in September, although nothing was expected of her. I need to buy vouchers then to be ‘ready’ to give grandchildren. When this was done she got in an awful state about wrapping them and so someone was despatched to do it for her ( still September). After that was done, it was cards that were her daily worry.

she has been given blood pressure tablets as it was on the high side.

sorry you’re going through this. It’s just dreadful.

Similar with my mother in law, they had my two year old for the night she got up at 3am and grandma said do you want to get up she says yes and so they got up. Forgetting the oven (though I do that) and the oddest one forgetting how to swim when they went on their last foreign break. However ages before that when I was pregnant she was constantly telling me apropos of nothing how little weight she’d put on to the point where it was really winding me up as a) it was bollocks medically speaking and b) it was starting to feel like a dig. Shed probably had a very small bleed at that point I would think and lost her filter as she was always bothered about her weight she was overweight but always maintained she ate nothing ( with a box of Maltesers next to her chair bless her).

The POA is good to get done early so it's in place. Did mine years ago so my chosen family can handle finance and health if ever needed. No need to wait for me to get dementia

The paradox of dementia is that you can't recognise it in yourself . Have a look at Teepa Snow video's for caregivers. GP is the main route . Dementia is a huge umbrella term My mum had vascular dementia through a series of mini strokes- she passed away at 85 - looking back though I think the early sign were there in her late sixties for sure - anxiety , depression, an inability to see things from others perspective. Suddenly becoming really really awkward ( she had that personality before) and set in her ways. Grandstanding at social functions and pushing her opinions seeming to lack social awareness causing upset. Shouting at me on my wedding day morning and reducing me to tears. Classic symptoms like forgetfulness never featured until in the later years . More like loss executive function , inability to engage with new technology. The brain is a complex thing , my mother could write a shopping list - couldn't read it back though or interpret her own handwriting. The crazies came much later ( hallucinations , confabulation, refusing to recognise family members as real- they were imposters to her ) She still knew who the prime minister was and that Covid was happening. Got little support after diagnosis . She thought we were all crazy - It was an extremely difficult time. She could mask and do hostess mode like nobody. Dementia nurse said she never quite come across some quite as convincing. A lot of people could not tell on first meeting her with a bit of polite chit chat. Sorry you are going through this

My mother had high blood pressure. Vertigo featured too - its all related . It was a TIA in her mid seventies that caused damage to the occipital lobe that was picked up. She did fine with all the occupational therapy and seemed to recover , Nobody ever mentioned the dementia risk. The occipital lobe is responsible for spatial awareness - she would insist on putting furniture to fit in stupid places was a classic - huge dining table in a galley kitchen - anyone that we all had to shuffle round " well Ilike it" . She couldn't figure out cooker knobs relating to which hotplate, turn a key in modern lock but these were later things. I remember the insistence on Christmas cards being sent on her behalf , sorting gifts - arrangements - all to be done now , now, now - or I was a terrible daughter. The later stages of tangible symptoms were a relief in many ways

constantly telling me apropos of nothing how little weight she’d put on to the point where it was really winding me

Thats interesting. my MIL does the same but afaik hasn’t ever been overweight. Recently referred to someone she met as “ah yes, the fat one”. I’m struggling to work out whether something like that is a possible symptom or just a personality quirk. I definitely feel like part of her filter has gone

@illiads my DM pretty much describes everyone as ‘the fat one’ now.

Certainly not something she did in her younger years, and in fact would cringe when my gran lost her filter. She would hate to realise that she does it now. Also everyone seems to be ‘angry’. She will say someone walked out of the communal lounge in anger, when in fact they probably just walked away to go to their room. I assume this is partly because she can’t read emotions very well anymore and her hearing isn’t great (even if she remembers to put her hearing aids in)

My DM went to a lot of effort to hide what was happening to her- not telling anyone things that were happening, making excuses for things she couldn't hide and sometimes pretending she was 'having a joke' if we commented on odd things she said. When she eventually got her diagnosis she said she felt relieved because she could feeling she had to pretend. Looking back, there were signs for many years before it became undeniable but she still doesn't have much actual memory loss- it's more processing and anxiety with her. She has alzheimers and vascular dementia. The symptom that led her to agree to a GP check was frequently not being able to find the right word- not occasionally but at least once in almost every sentence. Early signs, that I can see with the benefit of hindsight but missed at the time were:

• Explanations she gave to me about things she'd done/places she'd been were often confusing and if I asked questions to clarify it didn't help, she'd just shut down the conversation.
• No longer cooking proper meals- I assumed at the time that she was just getting more tired and not feeling like cooking but now I understand that she was struggling to cope with how to cook, even things she made regularly.
• Telling me stories about other people and things they wanted her to do that were worrying her. Nothing too outlandish, but just odd. Looking back, these were where mum had confused several things she'd been told and become anxious about it.
• Insisting that things have to be done a specific way with lot so unnecessary steps. More than just the usual 'but set in her ways' sorts of things. Looking back, I think this is where Dad had showed her how to do something and that specific time the steps made sense but now she can't see which steps are always needed and which were just for that time.
• Never being ready on time, having previously always been early. She knew the time, and knew she would have to get ready but somehow stopped being able to work out when to get ready and stay focussed on that.

The problem, of course, with all of these is that most could also easily be explained as someone who is just getting a bit older and not having the same energy that they used to have

Why WTAF about the POA? By the time you need to enact it, it can be too late to set up. We have ours done and I’m only in my 50s.

" The symptom that led her to agree to a GP check was frequently not being able to find the right word- not occasionally but at least once in almost every sentence" This is aphasia - my mum had this after a mini stroke but it got better after therapy - The brain seem to reroute itself . " Never being ready on time" - again - we used to call it the the "brandy loop" - a glass or two to settle her nerves when we went to collect her and then hunting for an item coat handbag etc , go to the loo and then another ... brandy. Confabulation - my mother in later stages would see things or stories on tv and then they became real memories to her . Another memorable one was I couldn't visit her one evening as I was taking my kids to the panto and had phoned to remind her. On the Monday I found the " buffet" ( grill pan on the hall way table and a margarine tub!) she had made for the "circus people" who had come to see her and then rudely vanished. ! Years before she had insisted I had broken a precious vase with my big backpack from my time as a backpacking student and would tell people this story. Only recently we were talking about it and my aunt said they she was sure she was told this long before mum getting ill and had accepted it as fact and I too thought I'd done it so often was the crime mentioned even though I could not remember doing it !!! It. Never . Happened ! Honestly I could write a book - some of it was quite amusing -we had to laugh - only dark humour got us through. I post stories here to help others recognise the early signs . There's a great article in the guardian called the deviousness of dementia - if you google it - it helped me get round the paradox of it all

@KaleidoscopeSmile We set ours up once our children were early 20s and old enough to understand the process as they are the Attorneys. The family were lucky to find a window of capacity for an elderly relative just before their official diagnosis of dementia to set up LPA for them. It was lucky really because their finances were a mess and they became unable to live at home very quickly. (Left the gas on, unlit - drove after their licence had been cancelled and the car was SORN etc.) We've unpicked the mess and they are well cared for but it would have been easier if it had been in place years ago.

OP as people age they lose the filter which prevents them saying things out loud which shouldn't be. Your example of 'the fat one' could fit this but the other examples sound like dementia. If you can get her to a GP that's the starting point and they should refer on to the Memory Clinic. It's quite easy to pass a GP test but the Memory Clinic takes at least an hour and part of it involves recall of what happened at the beginning. As PPs have said a diagnosis doesn't always change anything. But you will need to be aware of what might be coming so read the AgeUK website as it's got a lot of very helpful information. Good luck.

We are dealing with this at the moment.
DF I have had suspicions for a while.
The GP needs to a simple test that can be done in the surgery. They should also do some blood tests eg B12.
Depending on results a CT scan is next, and depending on results of that it will be a GP diagnosis and referral to memory/dementia clinic or no further action.
To warn you the results of the CT scan appear in the NHs app under tests - so that can be a shocking way to find out your parent has dementia.
There is a paper form at the GPs that your mum can complete to give the surgery permission to share information about your Mum with you. You are within your rights and to write to the GP as well with any concerns you have. I have done this several times. I find letters better than emails as the only email is the general practise one and I worry the email won’t get to the correct person.
I keep them as short as possible. With the name and dob of my parent and a list of what and when I have observed and is a change in behavior.
I ask it to be added to the notes.