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??

@CapitalAtRisk, I dare say at least 99% of the very elderly, whether compos mentis or not, would say, if asked, that they don’t want to move to a care home.

Unfortunately it’s so often the case that a person’s wishes are completely at odds with their needs. When it’s got to the stage that the person needs virtually 24/7 care and supervision - meaning someone on hand all day, all night, 365 days a year - then in the majority of families, residential care is the only practicable option.

@GETTINGLIKEMYMOTHER that's the point I guess of capacity assessment. If they are deemed to have capacity then they are perfectly entitled to make a poor decision and will have to deal with the consequences whatever they are. If they do not have capacity then a decision should be made in their best interests. Sometimes people have a limited capacity so can make a decision without comprehending the potential consequences, this is what makes the whole thing so tricky.

Yes, but from experience, some professionals are all too ready to deem someone to have capacity, if they seem to give sensible, reasonably rational answers - without checking with relatives that they are true - e.g. as regards managing their own shopping and cooking.

One of our oldies is now having to manage money, which has never before been the case. We opened another account in his sole name with his bank, and an amount of money is transferred into his sole account at the beginning of each month from the joint account, and he uses a debit card for that account. The main account is still active for all standing orders etc., and for any cheques (which I write and he signs), but the higher balance is protected from him going on a rampage - or being conned. Just wondered if that might be worth doing for your oldie?

It's really hard, isn't it?

I had no active communication from the hospital when my dad was in last year. I was there most days and got perfunctory answers to most of my questions.

He had advanced dementia which they recognised but they did little to support him.

His goal was to sit out for meals. Physio didn't see him in the first week because they needed me for the initial assessment. They tried to contact me- the notes say twice, but my phone confirms it was 11.51 and 11.52 the same morning. I was in the same meeting for both of those calls but they didn't respond to my 3 calls that afternoon or the first 2 next morning. Finally spoke to someone who gave me an email address for the ward physio so I sent them consent and a report of his baseline condition.
I got him out of bed and into a chair. He opened his eyes, drank properly and was more alert.
Physio tried once the following week but said he appeared tired and didn't really want to.
I only knew about discharge because his care home rang me to say he'd be home on Monday because he was bed blocking. 30 mins later the ICB phoned to say he'd been awarded CHC funding because he was on and of life care.. oh sorry, had the hospital not mentioned that? Poor ICB bloke was mortified.

Yes, and the problem with taking their word for it is that it isn’t the HCP at the hospital who then has the mad scramble to set up shopping and organise meals for the oldie who has insisted they can manage fine at home.

@OmnishambleMum can I just clarify capacity you refer to people not being able to understand consequences. I believe the under the Mental Capacity Act (MCA) this means they don't have capacity for that decision. The Scottish framework is slightly different but similar.

"The MCA says a person is unable to make a decision if they cannot do 1 or more of these things:

• understand the information relevant to the decision
• retain that information for long enough to make the decision
• use or weigh up that information as part of the process of making the decision
• communicate their decision in any way"

If they don't have the ability to weigh up information (ie. to understand the consequences) then they should fail the capacity assessment.

One of the issues is that everyone should be assumed to have capacity under the MCA. And in my experience professionals trying to get older people out of hospital don't place enough credibility or focus on family concerns about capacity. This is from the Scottish guidance regarding decisions about personal care:
"@Points to consider

• Is there a substantial discrepancy between the person's description of his/her daily routine or current living arrangements and that known or reported by others?"

The staff made no effort to get a collateral history despite the fact I told every staff member I spoke to that I and the wider family were concerned about her capacity, that I hold PoA and needed to be involved in discharge planning. I don't think there is more I could have done short of moving 400 miles. The hospital systems need to change.

Eg. in my case the person I cared for categorically stated that she would do all her grocery shopping on line. When in actual fact she hasn't placed an online order independently for months, and is also incapable of telling me on the phone or via text (or a neighbour who sometimes shops for her) what groceries she needs. I do have a system in place to work around this but it has needed creativity to get this.

@BeaTwix We had to go through an unsafe discharge from hospital resulting in a readmission within 24 hours which was exactly what we said would happen. The discharge team told us that you basically have to tick the boxes so oldie is discharged in line with their wishes but against families. On readmission discharge team were ‘able’ to reassess and confirm limited capacity so next discharge would be to a care home in line with current needs but now against oldies wishes. Morally this was the right thing to do but with hindsight I wish we’d let her go home again because that was what she wanted. In the end she was in a care home for nearly 7 years, in bed in a small room and totally trapped because she was so miserable and physically incapacitated by then but technically cared for. Had she had another fall/stroke she would almost certainly have died much quicker and been out of her misery. She didn’t understand ever why she had to be there and she never forgave us.

So tricky but I would rather she’d had a month at home in her own space than 7 years in a room she hated.

And so it continues. Been working today.

no missed calls.

But the oldie has told my DSis she is getting home tomorrow. She doesn’t know what her care package involves. Or if it was discussed with her.

After all the discussions last week I’m totally fed up.

Anyway, she doesn’t have the keysafe code (well she does, but she keeps forgetting it). So this could be interesting….

Me too! After going through the stressful and exhausting trials of dementia with both DM and FiL, I absolutely never want dds to have the worry and burden of looking after me. Plus my health and welfare P of A has added clear instructions about the sort of circs in which I firmly decline all life-saving or life-prolonging treatment.

My variant of the "oldie" has been phoning daily for the past 3 weeks telling me she's going home that afternoon. It's total bt, the first few days I phoned the ward in a panic (mine also has no phone, keys money, electricity at home, etc) only to be told that it's bull. Now I just hum-hum along to it when she rings up all excited that she's going home. Hopefully you're in the same boat!

@BeaTwix

I am shocked that despite your PoA the hospital are being so dismissive.

Most hospitals have a social work team attached and in situ.

Could you get them involved to assess your Mum, especially wrt capacity?

It is such a struggle (more than should be required!) being the advocate for your loved one.

Wishing you all the best @BeaTwix 🌻

It's so difficult given the distance but I can totally relate

Eta; this but expect you're all over this kind of info

Oh god the social worker saying she’d phoned mil a few times im the home but she wasn’t available. She didn’t kno what a phone was at that stage . If you handed her the phone she’d not know to put it to her ear, this was at a stage where she didn’t even recognise herself in the mirror.

My DM (with dementia) had already been in her care home for several years, before an independent social worker’ phoned to tell me that she and a psychologist needed to interview DM, to ascertain that she did in fact need to be there.

I said, ‘Well good luck with that - she’s 96 and long past the stage of being able to hold any sort of conversation.’

Many weeks later, the SW phoned to tell me that she and the psych. were satisfied that the placement was appropriate for DM.

I said, ‘Actually, she died 3 weeks ago.’
TBH I felt a bit sorry for the woman - she was evidently mortified.

^Totally this. How demeaning and dismissive. Presumably, this is one of your parents you’re talking about.

Op stated earlier not her parents and several posters think oldie is endearing, not me though

But that's kind of the point of capacity. If you have it, and you don't consent to your family speaking on your behalf (or you disagree with what your family say), then the family shouldn't be listened to in preference to the person themselves. Otherwise it's a green light for potential coercion. The purpose of the professional is to gauge the truth, which usually sits somewhere between the patient and their family's perceptions of the situation....

Yes, all very well if the professionals are competent, and not all too ready to believe what they want to believe. E.g. in the case of someone who won’t be self-funded, ‘Well, if she doesn’t want to move to a care home, we really can’t force her.’
Never mind the family who are absolutely on their knees with stress and exhaustion.

@GingerPaste Your opinion, but not that of the many other people who have responded earlier on this thread. Some agree with you - fair enough - but no need for repetition and de-railing a very useful conversation, that is helpful for people actually going through this situation, including of course, the OP.

Two of our 'oldies' are a couple - no children - who have been totally reliant on each other for over 60 years. One had a major health issue, as is now permanently in care. Her DH insists that he is fine, and they were going to discharge his DW into his care at home. After getting to know him and understand how he works, the social worker said - off record - 'he'd kill her'. The harsh reality of the situation, with nothing being done maliciously, all in an effort to help someone he loves dearly. Thank God we had a great social worker who took the time to learn and understand, and absolutely stood her ground with her managers in getting the right care for both 'oldies', although only one was supposed to be her concern!

That's awful. I remember when my dad died ringing social services as he had an appointment (he had only just died) so i said he doesn't need the appointment, why -because he's dead. Which to me was factual but god it was like I then had to comfort her as she must have not liked the bluntness. I obviously wasn't using the right language.

My elderly parent has recently spent time as an in-patient in a French geriatric unit. I was astonished at the level of care. The staff were equally astonished and horrifed when I told them about the shit show that is the UK's geriatric healthcare.

Discharge notes were comprehensive and included twice daily home visits from a nurse to check vital signs and administer meds etc. Repeat bloods to be taken within a month and other issues that need a home visit within a month of discharge.

GP laughed when I informed her, said that she 'guessed' that the daily nursing visits would be 'on me'. She's already fucked up the thing that needs the at home visit within a month by giving a clinic referral. The clinic refused to do it, so it's been referred back to the GP for an at home referral. Utter waste of time and resource.

@BeaTwix you have my sympathy. NHS is non functional. In France, a cognitive test is given to all geriatric in-patients as a matter of course, they like to have a baseline to work from apparently. My parent hasn't had anything from mental health services since initial diagnosis six years ago. There were other things they picked up in France which it turns out the GP has known about for years, but didn't bother doing anything about. One thing was causing parent to fall, the other thing has now become a more serious, potentially long term matter, which had it been dealt with properly, would have resolved itself.

Well they are finally out.

Hospital phoned to tell me the day before discharge about it. Couldn't tell me care provider, or how to contact them. Promised to ring back with details and details of medications etc. Didn't happen.

Someone went out to meet elderly relative in their house the afternoon of discharge. They don't know who they were, who they worked for, what their role was, or how I could contact them. Elderly relative didn't think to tell them I existed.

Carer went in this morning as planned they are meant to leave elderly person lunch but didn't as the elderly person said they would get their own. It's now 5pm and despite multiple text messages and phone calls elderly person still hasn't managed to eat anything since breakfast. I understand why carer believed the elderly person but I'm also frustrated that no-one spoke to me as if they had I've have passed on my usual message which is "don't believe a word they say unless you can verify it's actually true, don't let her use the cooker as she is dangerous with it (it is turned off at the mains) and I'm not sure about her microwave skills".

I've spent hours on the phone this afternoon trying to work out who the care company is. Finally got hold of new care coordinator who seems pleasant and was quite surprised that my relative hadn't been able to tell me anything as she spent ages with her yesterday going over everything which has nicely proved my point.

Big fucking sigh.

I stocked the house with some fresh food (thanks neighbour) and some long life stuff (thanks brother). Elderly person had one of the long life ready meals last night, is getting another microwaved for dinner tonight (these were bought as back up) meanwhile the three fresh ones with a sell by date of a couple of days languish in the fridge. I have to laugh or I would cry.

Oh I’m sorry, @BeaTwix how very frustrating- predictable and frustrating.

You are doing a great job. The system is soul destroying at the moment.