Yet another "the oldie has capacity" discussion

[BeaTwix]

The oldie is back in hospital. Not been answering phone or messaging family. I initially tried to ring the ward every day but it's hard as you can never speak to the right nurse and they never phone you back. I asked my siblings to help out but they felt it was unnecessary.

Ergo as I've been busy with work this week (I did a couple of on calls and a day in our basement operating theatre with crap phone reception) it dropped off and I hadn't spoken to the nursing team for about 5 days.

Finally got hold of her nurse to be told the oldies discharge planning is well underway. When I queried why no-one had contacted me I was told there was no need as they had spoken to the oldie.

I am SO frustrated I've raised TWO complaints with the same trust about her last two discharges when they did this and I spoke to the nurses on admission about how important it was to keep me in the loop.

Oldie has a good social facade but there is very little cognitive action behind the scenes. I'm doing all finances, grocery shopping etc. these days. We are still waiting for a cognitive assessment because there is a two year waiting list that oldie only joined 6 months after I raised concerns as the GP dismissed me initially.

I've also messaged the oldie daily to remind them to get the staff to loop me into the discussions so I can sort groceries etc and make sure their discharge medication isn't going to be a shit show again. Nurse looking after her didn't even know I exist - this is a recurrent sore point when they ask her about her family she always tells them she has none as her parents and husband are dead. Those of us who are living and involved albeit more distant relations apparently aren't even worth mentioning!

Hilariously 2 hours after my rather pointed conversation I got another call from the nursing team - they had just worked out the Oldie has no shoes in hospital as she had forgotten to take any with her. I was coincidentally in town when she went into hospital and went to her house to collect other stuff I knew she was missing (thanks AirTags) before visiting. I asked her if she needed anything. No mention of missing shoes.

So I only discovered that she had no shoes after I got to the hospital. Sadly this was only 8 hours before I got a train 400 miles home and I had no time to go rectify the situation. I didn't rush to sort this out as I was kind of hoping she could just go home in slippers. But apparently the physio team needed her in shoes.

So I persuaded one of my friend's very helpful teenagers to go to her house and collect the shoes. When I asked the oldie if she needed anything else brought in to the hospital from her house she then gave me a full on shopping list including two ready meals and a punnet of strawberries! It transpired she was disorientated to time and place ( thought it was Saturday and she was at home hence needing groceries). Teenager then told me she didn't know who he was. He has been her tech support for the past year and has seen her at least once a month, sometimes more. He is a lovely lad and always stops to have tea, cake and a chat.

Honestly, how do the staff keep missing how confused she is??

@minnienono but it’s the hospital that create the unsafe home situation by sending her home to a house with no groceries without informing me the person that buys the groceries!!

Or sending her out with a twice a day care package to administer medication at 08:00 & 18:00 but then putting her evening drugs in the 22:00 slot on the dosette box so the carers don’t administer them!!

Do you have power of attorney, you say you've raised 2 complaints, have you spoken with pals and the adult social services safeguarding team, it sounds difficult. I'd stop doing anything like shopping, tell the hospital again it's an unsafe discharge, how would she even get home?

My 95 year old mother had a fall in February, fractured her hip and had a partial hip replacement, discharged in the middle of March despite my protests that three times a day carers wouldn't be sufficient. Mum told the discharge co-ordinator that she did all her own shopping took care of her affairs etc etc, this was all a fantasy, yes she did live independently but with a great deal of help from me, her neighbours and a local cleaner/carer. I voiced my concerns about her memory but the staff didn't see what I was seeing.

She was home for a week before having another accident at night and dislocating her hip, what has followed after that has been hard for everyone, especially for Mum, three more operations and her hip joint finally having to be removed with the girdlestone procedure. Even though Mum has had a motion sensor alarm for most of her stay in hospital because she forgets that she can't walk and falls, it is only this past week, the end of May! that staff have realised she has memory issues. It's taken the repeated falls and near falls, me raising my voice emotionally to a hospital social worker and my own mother finally telling them " My memory is shot!" for anyone medical to realise she has a problem.

I have wondered why it has taken so long for anyone medical to realise my mother has cognitive problems. I think some of it is she presents well, I always have taken in clean "nice" clothes for her to wear, she looks good for her age, and if I'm honest ( I feel dreadful writing this but it's true) she has always been manipulative and a fantasist and this time it went against her. However I also think that when a lot of staff are going through a ward they just see surface presentation and if things look good they are not going to probe deeper, which is kind of understandable, but part of me also thinks that in geriatric care shouldn't there be markers they look out for? For example my mother has now been in a rehab ward for 2 weeks, she has physio every morning with a lovely physiotherapist, yet confidently told me yesterday, in front of the same physiotherapist that she has not had any physiotherapy at all!

So what helped us is me finally getting a backbone and disagreeing with medical professionals, and the fact that I visit as much as possible and everyone knows us on Mum's current ward, but not everyone can do this, and your elderly parent has to be on a ward for a period of time in order for you to build relationships.

It's a hard job this elder care it really is, yesterday after a discharge meeting which I got invited to because the staff are now taking us more seriously, it was agreed that the best step forward for Mum is a care home. Now it may be that my mother may always have ended up in this situation, and there is no point dwelling on the past, but I do feel if she had been assessed more accurately when she was first up for discharge and stayed longer in her first rehab hospital we might have avoided some of the distressing experiences she has had.

Quite honestly I prefer oldie to elderly.. so when the time comes I’m going to be an oldie… and hope that I have someone as caring as op in my corner

The key things you've not told us is do you have Power of Atttorney for either Finance and/or Health and Welfare and is "the oldie" deemed to have capacity?

If you have both PoA's, then yes the hospital should be including you in discharge planning. If you don't, then they are under no obligation to do so, and if "the oldie" is deemed capacitous, then they should not do so without consent.
(As an aside, if you're managing finances without a PoA, you should be extremely careful as you may be found to be committing fraud)

Without knowing those two pieces of information, it's impossible to give you any advice, as they are key to the entire situation.

What even though she obviously cares and is doing loads of stuff to support this woman? And has approached this forum asking for help, she’s not to get that because she’s says oldie.

Yes, she does, doesn’t she - clearly she cares very much for this relative.

Me too. Is she referring to her mother or gran? Such an odd term. What's wrong with DM etc?

Health care professionals don’t seem to want to acknowledge the value of input from the ‘children’ of elderly people. We’re viewed as background noise, interfering, irrelevant as we’re not health care professionals, taking up time. It’s very wearing. I feel quite vulnerable with my concerns sometimes, worried that I’m seen as overbearing or worse. We’re already on the back foot with the family dynamic of being ‘the child’ of the elderly person.

Obviously, they’re trying to prioritise the patients best interests by listening to them. But, when the identified problem that brought them to, say, the surgery in the first place is one that they didn’t even recognise as important, couldn’t explain to the doctor etc. I think we should be listened to also.

Just because the elderly person is charismatic and quick witted in a five minute appointment, it doesn’t mean they know how to get by day to day without prompts, food shops, help with household chores, deterring from walking without a walker etc…

Agree. No help from siblings, relative being challenging, but still in weekly contact, doing her admin and trying to sort her care out,

I was quite shocked when I first saw a post using ‘oldie’ but then realised it is used frequently on the Elderly Parents board. I’ve grown used to it and view it as a term of endearment now - are PP who are surprised by the term new to the board?

I don’t want to derail further but want PP to understand it’s quite a frequently used term.

Yes I’ve got PoA. Hospital have had multiple copies of it.

i’ve mentioned it to virtually every staff member I came into contact with.

It’s an old one so was effective as soon as signed. Obv I respect her wishes about stuff - one of the reasons why I’m working so hard to keep her at home is that is her stated wish . But I think a day will come when it isn’t safe/practical to remain there and then there will be some conflict. My siblings think I’m mad and that I should just move her to residential care (the hospital team /care homes I’ve been to see have all said home is best place for now).

One of the issues with this discharge is that they’ve identified a new care need (undressing) which has made her old care package that worked so well no longer viable so a new package needs set up hence delaying discharge.

One of the things I did was question how sure they were she needed help with undressing as it seems mad to lose existing established carers that she and I have a rapport with for a task she only needs level 1 help( supervision) with performing. As far as I’m aware she hasn’t been sleeping in her clothes! But the hospital team think it’s necessary so I have to respect their judgement.

My main concern is about sending her out without food in the house and confusing short term post discharge medications. Both of which I can sort. But I need to know.

If you have an undiagnosed and well presenting patient, why would a Dr spend time they don't have looking for cognitive decline?
I do get how frustrating it is when you know this is what the person does and their dementia is blocking them from understanding why seeming to cope isn't helping.
I had a District Nurse apologise to me once. Mum frequently got post operative infections because she couldn't remember to leave the dressing alone and also couldn't remember why she had a dressing in the first place.
Care to manage her dressings was put in place with daily visits from the District Nurse - I chatted to the woman and advised that Mum had more severe memory loss than immediately apparent and no concept of time, so when asked how she was for example would always say she was absolutely fine. It was better to go by how she seemed rather than what she said. Nurse politely eye rolled me and obviously thought I was making a fuss over nothing.
A few days later I happened to call round when she was there and she apologised and said she hadn't really taken me seriously (as Mum seemed very articulate and capable) and after spending more time with her she got what I was trying to tell her.

I've been through this OP. Basically the hospital want her out, and will process her for discharge without telling anyone because she says she is fine.

It's very frustrating.

Is there a Care Plan for her? They shouldn't be discharging her without one in place. Especially if OH are involved.

Presumably because she is not the the daughter or granddaughter?! The op could be the niece. Or even nephew. You don’t like the term ‘the Oldie’, but it’s a term of endearment for the op - can’t you stop pearl clutching and help? Or is one phrase so offensive that the op be shunned? Whatever happened to ‘be kind’?

When you say an old poa, is it a enduring power of attorney? That doesn't cover health and welfare which is now a lasting power of attorney which can only be used when the donor loses capacity not when it's signed, has she had a formal capacity assessment and failed, only then can you use it, poa are only effective when they are registered with the opg, has this been done and you've got the stamped copy.

@BeaTwix Which sort of PoA? Health and Welfare doesn't kick in unless "old" has lost capacity, so if she has capacity and says she's able to sort out food, etc, then they will take that on face value, especially if she can explain the process by which she'll get food (even if it's rubbish).

Her care team won't necessarily change, as most carers are qualified to perform the task of support with dressing. However, it is a change to her care plan, and that needs to be properly communicated and documented between the hospital and provider.

Part of my frustration I think stems from the fact I work in paediatrics.

All of our patients come as a unit with their family. We anlways include parents/caregivers and there are big moves to use parents names rather than X’s Mum (or the dreaded Mum - eg Mum, has he fed today”). This linguistic shift is being driven to highlight the importance of shared working/ parental role. I know some of you will have had negative experiences in children’s hospitals too. But I really think we get this right more of the time.

it would be inconceivable for my colleagues to discharge even a teenager home with no recourse to their parents. And parents aren’t always there 24/7 either for complex family reasons.

I don’t understand why for elderly patients it isn’t routine to include carer /cognition information in daily handovers.

All they need to patient name, cognitive status (full capacious, no capacity, family concern). And if no capacity/ family concern who supports in our case it would be PoA held by BeaTwix please include in all discussions.

I know this information is in the notes but it keeps getting lost!

It would be much easier if I was physically there. But I’m not and I’m not going to relocate although I have contemplated a sabbatical up there to try to make this all easier.

If the hospital team and care homes all say she needs a care home now then maybe that is the safest option for her, it's not realistic for her to stay at home if she's not safe even with your help, if shouldn't go causing conflict, she needs to have more supervision and you say she has cognitive decline which will only deteriorate. Has anyone suggested a capacity assessment and a best interest meeting, do you have the health and welfare poa and has it been registered with the opg.

I know what her PoA says and when it became active. I was there when it was written and heard the conversations with the solicitor. In addition, I have a family member and friends who are legally qualified & practising. One of whom is a PoA expert. Several of then have helped me write letters referring to relevant sections of the document eg the previous hospital complaints and we’ve also had issues with the finance section too and banks.

Old Care Package is lost. When you need more care it has to go back out to tender and for complex reasons her existing care provider aren’t even eligible to bid for new increased package.

@MissMoneyFairy no the hospital and care homes say home (as in the house she owns and has lived in for 50yrs) is the best place for her.

The people advocating for a move to residential care are my siblings who think it would reduce the burden on me considerably and question why I’m expending such a lot of energy to keep her in her own home.

Has she had a new care needs assessment, 24hour diary capacity assessment, who is the actual poa attorney, the hospital needs to see a stamped original registered copy, we had a similar issue.

Well, why are you?