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at the best of times so I decided to not call for two weeks as I found her call frustrating, presuming she had withdrawn information from me purposely to upset me.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

[WorriedAboutMum2023]

@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

Thank you, I might ask for some advice at some point. I have asked dh and sibling and a friend to help me, but no one has made a start yet

[MereDintofPandiculation]

If you do it on-line, how are all the signatures dealt with?

[system2319]

@MereDintofPandiculation Did it for my Dad approx 3 years ago. It was completed online but then needed to print it off and get the form signed. Sent it off then via the post.

[Hopeful16]

You DO need witnesses to sign.
You complete it online, then print it and sign in the right places.

[MereDintofPandiculation]

OK, thanks, both. That's good. I didn't want to mess around collecting electronic signatures or scanning documents back in.

[WorriedAboutMum2023]

Thank you for this info. I guess there no harm in only filling in what we can online then leaving all the witness stuff blank

[Hopeful16]

There's very little information to complete except names and addresses.
You will be better off deciding on witnesses, etc beforehand.
You need to decide if it will be you and your sister to be attorneys. Will you need to make all decisions jointly or will you be able to make decisions independently should the need arise. Who will be the witness - not a relative or partner. Who will sign as the certificate provider who signs to say that your Mum understands what she is signing and signs willingly.

[WorriedAboutMum2023]

There has been nothing forthcoming from sibling, dh or friend about reading and helping with lpo forms. I'm dyslexic and I couldn't have been clearer that I need help or it wouldn't happen. I have kids with special needs too so busy.
If they won't even read the forms then how can they help with lpo? I'm debating either not doing it going alone. I don't want to have to chase up the Dr for it all to fall on deaf ears or again, get no opinion on best course of action. It's getting frustrating. How many times to bring up lpo or nag someone to help me? I hate asking for help or support. I normally just crack on.

[WorriedAboutMum2023]

Could I do the lpo on my own and sibling can latter on once they buy into it? I can see myself deciding on a dnr on mums death bed whilst everyone calls me a drama lama. Maybe this isn't serious. Maybe I'm getting stressed over nothing

[MereDintofPandiculation]

You’d need either get her on the form now, or later do a new LPA and revoke the former one, which might be difficult.

You could get a solicitor to do it for about £500 (so £1000 for both Finance and Health and welfare) and take that money out of your mother’s money, provided you could afford to be without it for the 20weeks between the solicitor sending in the bill and the LPA being authorised.

[WorriedAboutMum2023]

Mum isn't going to pay for a solicitor and I'm skint. If my mum had the choice of paying 50k to live another five years or choosing a slow painful death I think she could keep the money. She won't pay for a taxi to the shops! Argh!,

[funnelfan]

if your mum is in denial with you, do you know how she is with others? I was wondering if she isn’t coping at home then a call to her local authority asking for a social care assessment may be in order and they may get more of an honest discussion from her.

I’m just picking up your saying she’s lost weight. This is one of the things that made it clear that my mum wasn’t coping. Her cognitive decline meant she lost the ability to use the cooker and microwave. Her medical issues meant she lost her appetite. Those two factors meant she hardly ate and not eating meant she got very frail and wobbly.

she still has enough mental capacity to know she should be eating regularly, and to admit she wasn’t managing with her food and eventually that paved the way for her to accept carers.

it’s tough, do call in the cockroach cage thread for moral support, there’s too many lots of us in your position.

[WorriedAboutMum2023]

Thanks. Since covid mums cupboards has gone from varied to instant mash and cup a soups. It's all like drips of decline that my sibling doesn't see.

[funnelfan]

The food thing sounds very familiar. Instant noodles and tinned chicken in mums case. My sibling didn’t really want to face the extent of mums issues either, and at the root of it they just weren’t ready to let go of the strong woman she once was. They came round after visiting mum for a few days (they live several hundred miles away), they couldn’t deny the extent of her issues after staying with her 24/7.

[WorriedAboutMum2023]

I'm sorry to everyone going through or has been through this. Stupidly this wasn't much on my radar. All mums siblings have died much older and of cancer. There's been no cognitive declines. A big worry for me now is falling.

[EmmaEmerald]

Sorry if I missed it but how old is your mum? Is it possible she just wants this to be the end of things?
As you are 90 miles away, if she has further issues and needs help, is it a case of arranging paid care at that time? 

Sorry to say, I have seen my father have two lumbar punctures, literally held him while they did it. It's not a procedure I can imagine having, there'd have to be an astonishingly good reason for it. He was no wuss but it was awful.

Also, my mum is 84 and refuses quite a lot of doctor stuff, if there's no impact on me, I say nothing. She's under geriatric care now which really helps, they understand what's worth doing and what isn't.

[WorriedAboutMum2023]

She is late 70's. Is the lumber puncture much worse than an epidural? I was looking it up and it didn't seem that bad, but I don't know of course. My dad said it was awful but If you said to a man I'm going to put a chochet needle into your spine they would of course be horrified. Say it to a woman in labour and she would marry you, so maybe I'm misunderstanding the pain factor?
A very valid point is the shunt surgery. Again it sounds very routine and safe but it's basically having a tube into your brain. If she wont have the shunt to tap is pointless. Under general on a frail old lady. I would respect mums choice. I just want that choice to be very informed. So have the shunt = possible cure. No shunt = fairly certain dementia. That's something I struggle with. The shunt might be better than the dementia. I feel a bit like it's my responsibility to get mum informed. I would like if if she said no procedures but I'd respect it and keep my mouth shut. I also want my sibling to get on board now, not latter after these conversations have happened as that's going to be doing that painful process twice. I can't see any option for a happy ending. I can't see a good outcome. My sibling is happy now in denial but it's not going to change the outcome. We have to engage on some level with the reality.

[EmmaEmerald]

Just looking at this, my dad was extremely ill already when he had them. So that might account for it but I was under the impression they were grim generally. Possibly the skill of the person doing it is a factor as well.
I don't know about epidurals.

What is the aim of the procedure, what do they expect to find out?

I think you have to take the view that your mum has capacity. I feel like I've been where you are - feeling like you're responsible for what goes in our parents' heads, only time took that feeling away.

[WorriedAboutMum2023]

The tap is test her cerebral fluid pressure. But I don't fully understand. I think they either do a flow test or remove some pressure to see if improves symptoms. Back in covid I had a suspected stroke and the Drs was talking about a lumber puncture and googling suggested it wasn't too bad. But the only people I know who had them disagree. I just presume as the epidurals was totally painless. I knew they was risky. But it was free choice, so no fear involved. Thanks for talking. Its really helping me. I appreciate your kindness and honesty

[namechange5575]

I know that you really want to make things clear to your mum, to alleviate any possible guilt at a later stage. But it sounds like she's already made a choice, and it is perhaps in line with her usual personality, and she is communicating it fairly clearly in her typical indirect way. She isn't frightened and clingy and asking for help. She might feel she is being harangued by being asked to reconsider her position repeatedly. Maybe just give her one more choice 'Mum, would you like to have some surgery which might be a bit frightening or painful, but which might extend your life or improve your quality of life; or would you prefer to just leave it and let things be, let's things take their own course, even if it's a less good course?' And then work on reassuring yourself that you've done enough. You've been a very good daughter, you don't need to keep pushing this if no one else wants you to. Take some if this pressure off yourself x x
But do have a go with the power of attorney! Just get started online, it's easier than it seems, just get as far as you can by yourself first. It'll be another burden off your shoulders. Good luck with it all.

[MereDintofPandiculation]

@WorriedAboutMum2023

Thanks. Since covid mums cupboards has gone from varied to instant mash and cup a soups. It's all like drips of decline that my sibling doesn't see.

An ex SW friend of mine refers to “the biscuit diet”

[WorriedAboutMum2023]

Well I had the weekend from hell last weekend. Sibling and dh just leaving me to it. My sibling is next of kin with the hospital and not me. Sibling managed to get hold of the hospital to add me as nok but didn't ask what was going on!

I have phoned 4 times this week and left messages but no reply with the hospital. I guess I need to contact via pals? The health poa is ready for mum.to add her wishes, preferences then sign. I'm hoping she will sign then I will start the financial ones. Sibling hasn't read any letters and I put us down as joint and severally and decided for my own mh I'm not going to keep on trying to get my sibling to accept or care about this situation. Sibling keeps on talking about getting mum to move closer to us, but this feels insane right now. Mum.might need a care home in a few years depending on her results. Sibling never sees mum so why would they help out or care if mum was closer? To whom? Me? I'm not capable of being mums carer as I have 3 school age kids with sen and a young adult getting ready for uni.

Dh says he will talk to mum with me this weekend but really I need to see her in person after that to get the signatures. I might allocate a set two hours a week to do this admin stuff.

But I need the facts from the hospital. Seems mum has hydrocephalus and suspected lower body parkinsons and possible dementia. She is difficult at the best of times.

[PermanentTemporary]

Im just wondering did they mean lower body Parkinsons, or Parkinsons plus Lewy Body dementia?

[WorriedAboutMum2023]

@PermanentTemporary

Im just wondering did they mean lower body Parkinsons, or Parkinsons plus Lewy Body dementia?

Oh good point! She had a dat scan last week. Could this cause the hydrocephalus?

[PermanentTemporary]

Im not sure - I think the hydrocephalus is more likely to be from an injury. I'm sorry, I've forgotten if she fell over?