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at the best of times so I decided to not call for two weeks as I found her call frustrating, presuming she had withdrawn information from me purposely to upset me.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.

[EVHead]

Do either you or your sister have Power of Attorney?

[Hopeful16]

My mum has diagnosed dementia and this is how she started. She would go to appointments and come away with absolutely no idea what they had said, what would happen next and/ or what she needed to do as follow up.
The only way to ensure clarity is to attend appointments with her. I filled a form in to be able to access her medical records and help with appointment communication. It has become an additional part time job- not one that I resent - but just to make you aware of how much time and energy it does take up.

[WorriedAboutMum2023]

@EVHead

Do either you or your sister have Power of Attorney?

No. But mum did agree for the first time ever it's a good idea yesterday. I don't mind taking on this role, but at the same time there will be zero support for me which would dictate my choices I think. I'm still shocked this looks like the possible reason

[JussathoB]

What a difficult situation.
Follow up the LPOA
Pull together with your sister, perhaps she could take the lead sometimes, given you have DC with SN
Can either of you go see your mother to read her medical letters and agree with her that you will go to (some of ) appointments? Unfortunately communication by telephone can be unsatisfactory.
Contact the consultant. Your DM may have a nurse contact who works with the consultant on managing patients and answering questions. You might be able to tell who this is from the paperwork, if not ring up and ask. My DM had this when she was having complex cancer treatment. This person should be able to help you navigate the right processes.
Go to her GP and explain the situation. Ask them what other steps should be taken.
Your DM is lucky to have you and your sister trying to support her. Is there anyone else who could help out - friend, sibling or cousin of your DM etc?

[JussathoB]

Just want to say also, and I hope this doesn’t sound too awful : remember you can only do your best to help. Sadly in old age people can suffer a decline, especially if they are affected by conditions like dementia and Parkinsons etc , and you won’t be able to prevent it all. Hopefully she will get a proper diagnosis and treatment/support that helps.

[Soontobe60]

Have you thought that maybe your DM doesn’t want you to help, that she would see this as interfering? When my mum became increasingly unwell she behaved similarly. She told me that she wasn’t comfortable with her children knowing her personal business or medical info. That’s her choice, hard as it may feel.

[JussathoB]

@Soontobe60

Have you thought that maybe your DM doesn’t want you to help, that she would see this as interfering? When my mum became increasingly unwell she behaved similarly. She told me that she wasn’t comfortable with her children knowing her personal business or medical info. That’s her choice, hard as it may feel.

So …. If DM becomes too unwell ( losing capacity) to get to any appointments, what happens then?
Doesnt want daughters to know ….. so social workers and carers will know every little thing even sooner ?

[JussathoB]

It’s fine making a choice, but sometimes people don’t take into account what the actual consequences might be.

[WorriedAboutMum2023]

@Soontobe60

Have you thought that maybe your DM doesn’t want you to help, that she would see this as interfering? When my mum became increasingly unwell she behaved similarly. She told me that she wasn’t comfortable with her children knowing her personal business or medical info. That’s her choice, hard as it may feel.

This has always been the case up to now. I do realise that unfortunately, doing nothing is a very option here. But in my head, if its reversible hydrocephalus I couldn't live with the guilt. But dementia / parkindons and bad choices, untimely death from bad choices I can not choose for her.

[Hbh17]

If she doesn't understand, then she will need assistance.
If she does understand, but chooses not to access treatment, then that is entirely her choice and should be respected. I would hate to have anyone force me into medical treatment that I didn't want.

[WorriedAboutMum2023]

I think if she has dementia and won't give LPOA I'm not going to able to force to do anything surely? I didn't think if this is how it pans out that I would be able to do anything, even have a say in wishes or care options.

I don't even know right now how I can even find out what is going on with her or her care. My friends parents gave LPOA in their sixties so it's never been discussed in our family. Ideally, to me, it would make more sense to me to pay to see her consultant privately with another adult to ask questions to see if its treatable and what the firm diagnosis is. I do fully understand that my mum's ideal mind be denial, brain damage and death in the very near future for a treatable condition. That's her choice, I wouldn't force her, but neither would I nurse someone making such a choice. Thing is, I don't think she has the capacity to know hydrocephalus needs fast treatment. Like I say if it's parkisons or dementia then that's very different. But if me or sister don't offer the help, she is at the mercy of socail care on her own. I can't see how I could tell SC what to do with no power of attorney.
If my mum has capacity, and wants to ignore this, fair enough. But I don't know this. Mum obviously won't see she is loosing capacity.

[choisia]

Not the main point of your post, but just to say that my FIL had a DAT scan. It wasn't for Parkinsons though, it was for Lewy Body Dementia, which has the same root cause as Parkinsons, so they share quite a few symptoms. I believe that LBD can only be definitively diagnosed post mortem, so FIL has only ever been given a diagnosis of 'probable' LBD, even though they're pretty certain that's what he's got. Maybe not relevant, but just thinking that there might be some genuine uncertainty about your mother's diagnosis, in addition to her own confusion about it.

[Littlewhitecat]

You can find all the info you need about setting up an LPA here www.gov.uk/power-of-attorney

Be aware this is currently taking 4 months at least to get sorted (I've just sorted two out) and if you think your mum has already lost capacity she can't set one up.

[WorriedAboutMum2023]

Oh crap. This isn't looking good is it? I need to print the forms out and see her ASAP. If dementia isn't yet diagnosed and no one has officially said she hasn't got capacity can we set the lpoa?

[NormanSicily]

Can you ask gp about getting her capacity assessed?

[WorriedAboutMum2023]

Not sure if the gp would talk directly to me would they?

[MereDintofPandiculation]

@WorriedAboutMum2023

Oh crap. This isn't looking good is it? I need to print the forms out and see her ASAP. If dementia isn't yet diagnosed and no one has officially said she hasn't got capacity can we set the lpoa?

Even if dementia is diagnosed, she can still give Power of Attorney if the "certificate provider" is satisfied she has capacity to make that decision, ie she understands what PoA is about and the consequences. Capacity isn't all or nothing, you don't lose capacity on the day you are diagnosed, assessment of capacity is assessed on a decision by decision basis.

redwoodfinancial.co.uk/can-i-still-get-a-lasting-power-of-attorney-with-dementia/

[MereDintofPandiculation]

@WorriedAboutMum2023

Not sure if the gp would talk directly to me would they?

No, not without your mother's permission.
You can write to them, and they can act on that information, but they can't give you any information about her without her permission.

[WorriedAboutMum2023]

Any ideas on how I get her gp to talk to me? Do I need to write to the gp and ask them.to contact mum to gain her permission? Finding out the next consultation date would be a priority

[Hopeful16]

Our GP practice had a form that my Mum had to complete to say she was happy to share the information with me.

[MereDintofPandiculation]

@WorriedAboutMum2023

Any ideas on how I get her gp to talk to me? Do I need to write to the gp and ask them.to contact mum to gain her permission? Finding out the next consultation date would be a priority

What I did was write a letter in Dad’s name to the GP saying he was content to share medical information with me, and got him to sign it.

[WorriedAboutMum2023]

I have asked sister to have the lpoa conversation with me and mum. If mum says no then I'm going to respect that but I'm going to have to check my boundaries with how much I can get sucked into if she is determined to make bad choices. If sister won't get involved in the poa I don't honestly think I will have the capacity to take on much. Luckily mum only has utility bills so maybe it's a handful of direct debits at most to deal with.



I'm going to see her soon. She lives two hours from me. So I don't know how this will work. Read the letters, take the pre written letter to the gp with me, ask mum.about poa and then just go from there. I have to be realistic how much I can cope with.

I am a real control freak in some aspects of my life. But I have a young family and live in another county. Got to keep reminding myself these aren't my choices to make. I can only offer help, I can't change the outcomes anyway if its dementia or parkinsons. I guess like a lot of people I just presumed dementia wasn't a possible outcome. I am normally who sets off on quests to 'save' my kids. But got to be mindful mum might not want saving. I fear mum's only desire is for to go away or reverse. I think that's my big fear. Mum thinks she will just get better

[WorriedAboutMum2023]

Spoken to mum.today. she has seen a specialist in the next town about a skin condition. They asked her to go back three times a week but she said she can't. I asked her if she asked why they wanted to see her three times a week she said "I don't have time to ask all these questions". I asked her if I can go to next appointment and she said it says no visitors. I just don't believe her. I was in hospital twice last week in two different hospitals and neither said come alone.



Its really really hard but there's a strong possibility she doesn't want to know and even they offered he treatment for hydrocephalus she will find a reason why it's impossible for her to get to it and impossible for anyone to help her get to treatment. I know that's her choice. Selfishly I don't want to deal with the consequences of her unwise choices. Every conversation now involves asking how old my kids are. If she gets a dementia diagnosis she won't be telling me. Not sure where this leaves me? If she gives her life savings to conman, throws her house deeds in the bin then falls and ends up in hospital I'm going to feel like I didn't do enough to prevent it.

[bellac11]

Just to add to one of your points above, I was given an MRI for Parkinsons after the neurologist has more or less counted it out, simply to make sure all the loose ends are tied up. I havent had the results yet so am hoping he was right.

[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.