Mum being passive in hospital apps and her care. Ignoring / not understanding letters

[WorriedAboutMum2023]

My mum is late 70s. During covid she has got noticeably frailer and less steady. She has some bad falls on standing and lays on the floor for over 6-12 hour's unable to get up or calling for help. Her gp mentioned parkinsons. She was told it was a 2 year wait to see a neurologist but saw one within 9 months. I asked if she wanted someone there at the appointment, but she said no, she is difficult at the best of times. The neurologist said it wasn't PD. But did tests, including a mri which showed age related changes and hydrocephalus. She gave me and my sister two different accounts of the conversation and she is difficult at the best of times so I decided to not call for two weeks as I found her call frustrating, presuming she had withdrawn information from me purposely to upset me.

Anyway, I phoned her yesterday to see how tests or possibly treatment was going. She said she has a Dat scan which is for Parkinsons, I asked why if they had ruled out PD? She had no idea what that scan was or why needed, hadn't asked. I asked if she was having any hydrocephalus treatment or tests, she didn't know. I asked if I could come to her appointments, told no. I asked if she write down questions to ask in appointments. She then said she didn't understand any of it, she is ignoring the letters!

I got her to read some. She was reffered to a teaching hospital in London, but they reffered her back for more tests locally. Asking to rule out other causes of dementia! She didn't understand any of it, said she regrets getting the tests. I looked up her consultant and he is elderly medicine not neurology.

I relayed this info to my sister but I think there is big denail here. It's looking like mum has

1. dementia
   
2. parkinsons
   Or 3) hydrocephalus with no treatment plan. Which will cause irreversible symptoms of 1 and 2 if untreated. It's already been about 2 years of ignored symptoms.
   
   None of those possibilities has a good outcome. Sister thinks she will insist on attending the next consultation but 1) no idea when that will be and mum doesn't know 2) mum won't tell us.
   
   Any ideas? We aren't a family that talks about these things and certainly not great at support in a crisis. I have 3 school age kids with SEN and ehcps. I am waiting to be allocated a MH social worker for years of extreme stress and burn out related to schools. Also my dhs cousin in her 20s has just been diagnosed with terminal cancer. I don't know if I have this in me. I'm the fixer and saver but as you can see, getting a MH socail worker is serious burn out. We never talk about how we are coping. Mum and sister have zero idea what's going on with me. I have no plans to discuss that either as it will be glossed over and minimised. Much like mum's situation.

[PermanentTemporary]

I think I would prioritise the letter signed by her giving her GP permission to talk to you. That way you can get appointment details from the practice secretary if you need to.

She has said that she's potentially OK with giving you LPoA. I'd crack on with that now. There are stages in the future when she can change her mind again before you send it off, but I wouldn't agonise too much. You're not trying to harm her, you're trying to advocate for her. At any point with a LPoA decision you can just say 'doctor i don't have a view - do what you think is best' if you think that's right. But it gives you the chance to represent her views as the people who know her best. Thats all.

[WorriedAboutMum2023]

Yes your right. I need to stay calm and try to stick to the plan. Hopefully going to see her soon so maybe it will be easier talking to her in person. I will write the gp letter with her. I just find it frustrating she doesn't ask this specialist wanted to see her. She said her skin is driving her mad but doesn't want a solution it seems.

[FictionalCharacter]

@WorriedAboutMum2023

Mums had the MRI which she said showed age related charges to the brain but definitely not dementia but who knows what they really said to her.





i do hope your mri comes back clear. I think no news is good news.

Did they really say “definitely not dementia” or did she say that?
My mother had a CT scan (not MRI) and the report just said something like “deterioration consistent with ageing”. At that time she was already definitely showing signs of serious cognitive decline (and some very weird behaviour). From then on she declined quickly. She was only diagnosed with dementia when she had got really, really bad.
I don’t want to worry you but be aware that sometimes dementia only gets diagnosed a long time after the family have been aware it’s extremely likely the person has it.

[PermanentTemporary]

My mum had quite a bit of cognitive decline before her stroke, and my mil has dementia. Both prioritised looking OK in front of family over any health issue. Unfortunately they couldn't see that their version of 'looking ok' really wasn't and was raising alarm bells, but they could see we looked alarmed, and would work even harder to shut down discussions that might reveal difficulties. I can't blame them for that, I'd probably do the same. Id be as honest as you can - 'I have to say mum, when you won't tell me what they said, I do wonder if it's hard for you to remember it', but ultimately yes it is their choice how much they share. If they will give you permission to support them by accessing the GP surgery, you can stop having to quiz them about this stuff.

[WorriedAboutMum2023]

@fictionalcharacter my mum said its definitely not dementia. No one has seen any of her letters. I was thinking wtf could it but dementia. However sister was happy with this so I put it out of my mind. I seem to be the only one of the three of us worried age related changes to the brain could be dementia or parkinsons could be possible because the gp said so. Sister thinks mum is solid cognitively. Mum and sister rule out parkinson as no tremor.

I'm frustrated again this morning thinking as soon as I woke up that mum is do determined to never help herself. She lives in vitorian terrace with stairs outside and in. She can't use the bath and has never considered replacing it with a shower. She has no downstairs loo but struggles with her stairs. I suggest building a downstairs loo, or moving, or getting a cleaner or a gardener or online shopping She aways says "how could I do that the?" Things that everyone else can do, (she has lots of money) are impossible. For her. Offers of help or solutions are rebuffed.

She lives about 90 miles from me. I have multiple kids all under 20 and two in juniors. I'm not what happens if she changes her mind about the letter to access her gp and or the lpa.

[FictionalCharacter]

This is so hard and I really feel for you. As people often say on here, if she has capacity you can’t make her do anything she doesn’t want to do, but it’s incredibly hard to feel so helpless.

As @PermanentTemporary noted, people can be very good at pretending nothing is wrong. My mother put in an Oscar-winning performance in front of her GP when I managed to take her. She told him she was eating 3 meals a day, taking her meds, washing, brushing her teeth- all of it completely untrue.

[Dustybarn]

My mother passed away from dementia and had no relationship with any of us for the preceding 20 years. 8 years later we are still struggling to wind up her estate. She had lost her identity documents, had no bank docs and it took years to piece it all together. If you cannot get her to consent to a POA then at least get a copy of all her documents and a list of bank accounts etc, and get her to lodge all important docs with the bank or to give them to you for safekeeping.

She may well feel that your well-intentioned offers of help constitute interference (I have that from my other parent, who lies about his health all the time as he is worried that we will encourage him to eat better, drink less etc. He is determined to do things on his own terms so we have to respect that.) Other options which could help would be for her to move in with a family member or nearer to family, or into a care home. Given that she has fallen a few times and been unable to get up (which must be a terrifying experience) maybe she would consider this?

[WorriedAboutMum2023]

Mum talks about moving or going into a care home occasionally but tbh I feel its just fishing for us to say "don't be ridiculous! Your fine!" Because if I say 'I think it's a good idea, shall we look into it?" She starts with "how am I supposed to do that then!" That is her standard quote. Annoying. She has no possible sway in her outcomes. Life happens to her. Exhausting

[PermanentTemporary]

@WorriedAboutMum2023 tbh thats your cue to say 'well we're going to do the paperwork so that we can do the legwork for you' and keep going with the LPOA process.

I hope I'm not sounding like I think any of this is easy. It's completely shit and I think some of this stuff nearly killed me. It certainly took months if not years off my life expectancy.

[PermanentTemporary]

What the scan may have said is 'small vessel disease'. In a way don't focus too hard on the diagnosis. Focus on whether you think she's managing X or Y that she needs to do. She doesn't need a diagnosis to benefit from the LPoA if you're willing to do it.

[alyceflowers]

Can your sister take the lead on all this? It sounds like you have a lot on your plate at the moment.

[WorriedAboutMum2023]

I think my sister is in an degree of denial. I have asked her to talk to mum about the poa as well so a two pronged attack hopefully. I seem to be in the role of the fixer but I'm not really happy as being the sorter and fixer puts me in the firing line for getting it wrong or not bending over backwards enough. If you do very little for other I suspect people are much more grateful when you fo the bare minimum.

[SinisterBumFacedCat]

You could write to her GP to explain that whatever diagnosis, information or treatment they give your Mum she will not remember, rendering the whole process pointless and destined to be repeated at great cost. Copy in her local social services department and mental health team. Someone will recognise the risk this is putting on your Mums physical health and start the arse covering. Practically you could offer to give your Mum a lift to her appointment and then sit in the waiting room, when she gets called it’s more than likely that the consultant will ask if you are coming in too and that would put her on the spot.
Definately not dementia isn’t a helpful diagnosis. My own DM showed no signs on the first scan although she was 3 years in, no short term memory, paranoid, anxious and failed the memory test spectacularly. Second scan showed signs of Alzheimer’s. Certain family members stayed in denial and were happy to collude with Mum not to take medication, the same family members who fucked off into the distance and had No involvement in her care. Denial might be quite handy for your sister to avoid helping you.

[WorriedAboutMum2023]

Checked her hospital website in the middle of the night as I woke up then couldn't sleep. It's says two max visitors if your a inpatient and one max companion if your going for appointment if you need one due to space. So mum is either lieing to me or got it wrong. I feel it's more likely a lie.

[WorriedAboutMum2023]

I talked to my sibling but they are confident mum is a sharp as a pin and it's not dementia ( hasn't seen her in years so this is just phone convos) Sibling said a shunt has been mentioned by mum but mum's never said she has been offered any treatment. I'm getting increasingly stressed and dreamt I had a shunt operation last night. I think I'm on my own asking about the POA now. If I ask mum and she refuses or she changes the subject I guess that's it? I'm still planning to see her to read her letters. I don't know what to do really. I'm feeling like I'm overeating now as the only one concerned about treatment or diagnosis is me. Everyone else is happy to plod on waiting months for the dat scan, seeing the consultant alone and no Date for a shunt. I'm torn what to do now? Mums health, mum's choice but what if she is cognitively not understanding?

[Peridot1]

It’s so hard. Especially with the distance involved. You mentioned you are going to see her soon. When is that? Can you bring it forward? If you go and see her and get as much info as you can you will be in a better position to tell your sister what is actually going on rather than what your mum tells her.

my mum had Lewy Bodies dementia and it came with personality changes initially. We had no idea what was happening or why but we knew she wasn’t right. She knew too and was basically terrified so she ignored it. It sounds like you mum might be doing the same.

My MIL is pretty ok cognitively but is incredibly stubborn and refuses a lot of our suggestions. For her it’s because she is terrified of losing control of her life.

your mum could be a bit of a mix of the two. Cognitive decline for whatever reason plus stubbornness plus fear of the future and fear of losing control of her life. Which when you think about it is pretty terrifying.

[WorriedAboutMum2023]

Yes that's true. I really fear getting dementia too, it's a scary thought. I want to see her this week ideally. I'm going to ask to take photos of her letters. She should at least agree to that.

[ArcticSkewer]

Can you flag to her GP and consultant that she isn't sharing information and doesn't have Lpoa or carers nearby, so they can make appropriate referrals for social care support if needs be. In case she is telling them that she has daily help from you etc.

Otherwise I would respect her wishes. It doesn't sound like this is a new personality change for her.

[WorriedAboutMum2023]

I'm going to ask mum if she will sign a letter to her gp asking for permission to talk to her gp about what's going on. No it's not new personality changes, she has always been like this. Not asking medical questions etc.

[WorriedAboutMum2023]

I did eventually see my mum. She seems frail and looked like she has lost a lot of weight. Read her letters. Got her to agree to both poa but I think she might push back on the money one. That's not so important. Dh said he will read through the forms. I'm dyslexic so it's hard going lots of forms, I would need to set hours aside to process them. Told my sibling. I'm really not sure how invested they are or how seriously they are taking it. I think for my own sanity if they don't read the things i sent them by say aweeks time I'm I'm to plough on expecting to do it alone. I don't want to find myself in a situation where I'm rushing about like a blue arse fly in a panic last minute. Mum said there is a procedure she doesn't want. I told her she needs to get her facts right first on the pain involved and consequences. Then if sibling isn't involved by that point, mum has made her desision then I don't want sibling then wading in once it's all been disected and thought through. To be fair my sibling thinks it's a non issue and everything is fine. It's not my place to keep harping on to them.

[PermanentTemporary]

That sounds like a plan @WorriedAboutMum2023. I really hope you can continue to support your mum like this.

[WorriedAboutMum2023]

Thanks. Mum needs a lumber puncture but there's no Date for that. Mum thinks it's a hideously painful process as dad had one about 40byears ago and said it was awful. I'm trying to reassure mum a lot has Changed since in 40 years and I have had one painless epidural and one that wasn't in any painful but mildly weird feeling ( I could feel it go in but no pain at all, just more aware of it). But I have to respect if, she told she will be unaware and numb, it's a no because how would deal with shunt surgery? She is fit enough physically for both but it's her body and choice. I would like her to fully understand not being treated for hydrocephalus when weighing it up. I might struggle more if she isn't informed. But again it's not about me, but I do have choice to acknowledge my feelings or frustration on here and to myself. I have decided it's OK to be frustrated whists respecting choices. I don't have to like the way it's looking to be panning out but I can still be supportive.

[Hopeful16]

POA forms online are quite simple to complete - just a pain to collect all of the signatures and witnesses, etc.

[WorriedAboutMum2023]

Thanks. Can they be completed completely online? I guess mum's gp would be a good witness? I find the paperwork overwhelming

[Cherrybl0ssm]

Doing PoA now for parents.
online form is very simple. You don’t need a witness. You do need someone your mum likes and trusts to talk through that she understands PoA. Then this persons name and address are noted on the form There are two kinds of PoA. Financial and medical. its £82 per kind
Or you can get a solicitor to do it all. approx £500
Then it takes about 10 weeks to send it off and gave it registered.
You can also start the forms. save and go bafk ti finish them