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??

OP, this is why I've said to my DH and DC that if and when I go gaga, or am similarly incapacitated to your oldie - put me in a home. Just find a nice one, where I can drink red wine and eat chocolates.

So many people are all "I will never go into a home! You must not put me in one!" and then a situation like yours arises, where it really seems that your oldie would be safer and better looked after in a home.

As her poa you can ask the hospital to do a capacity assessment

‘** 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.’

Dear OP, I think you should reconsider your opposition to the residential care home. In my experience, people often dislike the idea, and are afraid; most of us approach a major change in our lives with some apprehension, and this can get more pronounced as we grow older and less powerful and competent ( speaking personally). However, a lot of elderly people are actually relieved once they have made the move, a well run care home is a more comfortable, safer, less worrying environment. People can even enjoy the company of other residents, and the staff are more long term so know the resident.

That has been my experience, anyway. I wish you success in your efforts to do the right thing.💐

Both of my relations who had dementia perked up no end when they went into homes. They were well looked after, and the weight of trying to figure out the everyday world was lifted from their shoulders.

They also slept in safe beds, with a night rail so they couldn't fall out. There were activities and friends.

Just because your oldie once said she didn't want to be in a care home, doesn't mean she has any insight into why she should be in one now.

Just lending a bit of solidarity. It sucks, this situation. You are good to be working so hard at it.

However, sometimes you need to drop a few balls before anyone realises how key you are to a situation. Until they realise she doesn’t have shoes, doesn’t recognise her young friend, can’t remember the code for her door and doesn’t know whether she needs shoes or a ready meal, they won’t listen.

Basically she needs more support than you can realistically offer- because you live at a distance- and needs a new arrangement.

You’ve done a sterling job, but I think you have reached the end of viability.

Good luck with Oldie! She’s lucky to have you.

We have three 'oldies' - very much a term of endearment used to implicate a closer relationship than that of 'friend' - which is the reality.

Maybe focus on the more important things, like who is providing the care for the person who is struggling, and any suggestions to help?

I feel your pain OP - one of our 'oldies' insists he is fine, and it's only when he tells you for the fifth day running that he's had chilli for tea, and done the weeding and all of the laundry, that you realise that he might just be trotting out phrases that sound plausible to anyone not closely involved.

@KatherineClimpsin, from experience, a lot of so-called professionals are all too ready to accept someone’s word that yes, they can still do all their own shopping, cooking, housework, etc.

My mother was still saying (and TBH believing this - it wasn’t ‘denial’)
when she could no longer even make herself a cup of tea.

IMO too many professionals still have no idea about the practical realities of dementia, even if they’ve ’been trained’. E.g. they still imagine that written reminders for e.g. taking meds, will work - no conception that the person with hardly any short term memory - even if they remember to look - will have forgotten almost as soon as they turn their eyes away. Ditto the phone - I even had a GP suggesting phoning to remind DM - no idea that she’d forget as soon as she’d put the phone down.

What is perhaps even more irritating is that they assume you couldn’t have thought of anything so simple! 🤬

Where I work all elderly care patients are given a mmse and a dementia screen on admission if they are not acutely unwell or delirious, why is she in hospital. Have they ruled out other reasons for her confusion. In my experience when the family, poa and hospital can't agree on safe discharge placement they get imca and the cop involved. If she's confused and disoriented then how is she going to be safe at home, that's what I don't understand.

Usually it's the medical professionals, carers and social workers who don't understand until a crisis occurs. Unfortunately I think this is also the case for OP.

This situation is completely unsustainable. Your oldie will keep ending up back in hospital - next time it may be a broken hip, or "delerium" brought on by a UTI - until everyone finally realises she needs more care.

OP, don't fall into the trap of "But she would never want to go into a home!". If you'd asked her if she wanted her loved ones dealing with the issues of double incontinence, or worrying themselves sick every day because they didn't know what the next crisis was going to be, or dealing with the fire she caused because she tried to use the cooker - and she may have had a different view.

Who is going to look after her during the day in-between carers visits. Has she had ot kitchen and bathroom assessments. If they think she needs more care with undressing which is delaying her discharge why are they saying her discharge planning is underway.

Because that's what geriatric wards do. They blithely discharge the patient, or they guilt you into looking after them if you object.

When one of my oldies was discharged, and was totally incapable of looking after his catheter and medications, the care team was so horrified that they made a complaint to the hospital.

No real advice but solidarity, OP. From my families experience, the hospital will not take any notice of cognitive decline unless it is a formal diagnosis, and even then, the response is questionable.
My late DF was diagnosed with vascular dementia but never accepted the diagnosis. When he was admitted to A&E after a fall, he didn't tell them and he was therefore treated the same as any other patient. Cue a step change in the dementia and a year long process whereby he never came home.
My late DM had a fall and was admitted to hospital whilst under the review of the memory clinic. We all knew things weren't right, but with no formal diagnosis, when they asked her if she wanted to go home and would be able to cope, they took her word for it. Cue a 13 month long period of shuttling home, back to hospital, back home, back to hospital, into one care home and then into another home via a bout of Covid caught whilst in hospital. She never came home again, either.
And ignore all the posts about your choice of language. I found it quite obvious that, to you, it was a term of endearment.

Surely there are many ways to screen elderly patients to see if they would be safe living at home alone to prevent failed discharges that lead to accidents and repeat admissions… OT assessments, screening tools to see if they could keep themselves safe at home… how would you contact the emergency services, would you answer the door to a stranger or let them in to your home etc.

I don’t think procedures are being implemented when it’s obvious they should be. It’s all about the quick fixes to get people home, saving money, make them someone else’s problem. The irony, no doubt, is that the cost to the NHS goes up.

Surely, when elderly people are declining physically and cognitively, relatives are likely to be the first ones to notice. We recognise when they are not safe, at risk. We discuss it with them, they lack insight into our concerns.

Naturally, we try to alert a health care professional (who is probably too young to draw on any real experience), because we’re terrified of what might happen.

They check the elderly person’s views (not understanding their lack of insight), and support the elderly person to carry on regardless, marginalising the concerns of the relative.

The message seems to be: you’re just going to have to find your own way to deal with the situation because we’re not interested, haven’t got the capacity to be able to help.

‘The Oldie’ is the name of a magazine. Not offensive.

Me too. Why not say parent or mum?

Because it’s not her parent or mum? Can’t you at least read all the OP’s posts before commenting?

Thanks all for the more supportive posts.

I am very open to the idea of residential care, honestly . I just don’t think we are there yet. It isn’t far off. But not now.

When she is at home she still gets out and about almost daily (she has a £700/month taxi habit!!) and participates in lunch clubs and a pretty serious amateur choir that performs at a high level. I was slightly dubious if this was still ok but I have enquired politely of the choir leadership team how things stand. She has been singing at a high level university and the tell me all is ok. I suspect it’s a longer term retained skill vs all the short term memory stuff that is problematic.

I’ve started looking at care homes. And I’m sorting the money situation so it will be easy to enact. I did have plans to do quite a comprehensive refurb on the hoarded house but now I’m only doing things that keep her safe…although she is furious I’m replacing the very worn/ now torn/trip hazard carpet in one room without decorating first. I politely reminded her it’s been worn since she retired and if she wanted the room redecorated she had 20yrs to organise that in. I suspect it’s stuff like this that cons the hospital staff. I aleo know she will have totally forgotten our conversaturn about it!

Everything at this point is about balancing risk - will she get lost? Will she lose her keys and get locked out? Will she lose her bank card and the contents of her current account? If any of that happens or she gets injured falling (she has a falls alarm, and on the one ocassion she fell she used it) I’m happy that I made a risk-benefit decision with informed professional advice.

When she is at home with her care package and the additional help I have in place it works ok. I’m lucky that her cleaner is really flexible and the teenagers doing jobs for money really help. They also provide youthful, alternative chat which she thrives with. You don’t teach for 40yrs and not enjoy chatting to young people.

I’ve got her airtagged within an inch of her life to try to prevent the getting lost bit (which is how I knew she had gone into hospital without her keys and walking frame). My siblings are joking my next move will be AirTags in her shoes. I’m quite tempted. Need to look inside the sole unit of her new shoes 😜

The really problematic stuff has been the financial chaos and she created that when she had capacity!!! That is slowly unravelling but has been a lot of work. Fortunately now mostly done.

The house was an issue but is now sorted to an acceptable level.

There is still a decomposing car but I’m ignoring it (I offered to sell it just after she stopped driving for health reasons when she still had capacity and it was worth a decent amount (over 10k). My brother offered again during Covid (car now worth more). Again rebuffed. Now we’ll have to pay someone to remove it. The whole situation is very frustrating.

@MissMoneyFairy she has had all the relevant assessments. Her care package covers all the bits she struggles with. She is pretty lazy (not new!!) so if someone is going to provide her with cooked food she doesn’t interfere which is useful as it avoids her introducing additional risks by being independent.

Dressing was a new one on me. We sorted through her wardrobe about three weeks prior to this admission and I made her try on every pair of trousers, blouse and coat she owns. She managed fine which is why I’m confused about it suddenly being an issue. So either she has deteriorated a lot, or it’s just easier with help. I actually think if she was more with it she would have rejected this help but her cognition means she hasn’t fully processed the implications of being put in her nightwear at 6pm.

I suspect when she is home she will simply refuse to do it which is what she has done with other stuff she hasn’t liked.

She was delirious on admission probably due to the raging infection /AKI hit that took her into hospital. I would say she is now back to baseline. I suspect it’s a vascular dementia as it’s pretty stepwise and her peripheral circulation is crap. My GP relative always reminds me “if that’s what her feet look like think about what the circulation to her brain is like”

I guess I’m just frustrated that despite being a highly educated and articulate family we are still struggling to be taken seriously by HCPs. Particularly upsetting when I am one myself and talk the language.

I had similar decisions to make with my Mum and decided that the risks of keeping her at home were worth the benefits. Unfortunately that came with worry for me.
The reality is our oldies just get older and their health inevitably declines.
You sound extremely reasonable and competent and are investing a lot of time in keeping your relative as safe as possible.
It's a continuingly shifting balance at this stage of our lives and you just have to keep assessing what the best decisions are. Your relative is lucky to have you advocating for them.

Following with interest OP after 18 months of clusterfuck playing geriatric roulette with three "oldies". ( No apologies for choice of language, dark humour is my armour, even though I'm dying inside and overwhelmed by the sadness of a very complex situation.)

I'm currently pursuing a complaint through PALs and have been invited to my MPs surgery following emails explaining how I objectively can show how virtually all the agencies involved with my DF who died in April and my SM, who was unsafely discharged from a section, attacked my Dad three times in the following week rendering him homeless this time last year, contributed to his rapid decline and earlier than expected death This was despite my advocating fiercely for him in every way I could.

Because SM was always deemed to "have capacity" (sometimes fluctuating) everyone's hands were apparently tied. Well, we'll see about that.

I believed my calling was to support my Dad through his twilight years, now I'm going to be trying to right some wrongs for him and myself on a personal level, and then I intend to become a thorn in the side of all those who play "pass the hot potato" in the realms of elderly care.

While individuals involved with us were somewhat sympathetic, the default was always "system says no", and so much of it was down to lack of communication, not listening, treating us like a nuisance, and shocking record keeping.

Some people seem to forget that if the Fates allow, we'll all end up "oldies" potentially with huge vulnerabilities, and I think accusations of dehumanising should be aimed at the conveyor belt and mostly "cost efficiency" approach of elderly health care in general.

I've been "understanding" and "polite" because the slightest remonstration to some HCPs made them double down on unreasonable and high risk decisions. I'd rather try and negotiate peace between warring nations than deal with some HCPs.

Anyway, I hope you get things resolved OP. I stand in solidarity and understand and admire your insight and determination to your oldie. It's often a thankless and frustrating task, but when you know what's right, you have to pursue it the best you can.

Solidarity and best wishes to all in this particularly shitty club x

@BeaTwix you are a wonderful person to make this much effort is all I can say. It’s so hard looking out for someone elderly that you love and want to protect and easy to forget they can make a poor decision but it should still be their decision. I have personal experience and got it wrong with hindsight, I wish I’d thought about it differently at the time.

This sounds SO frustrating @BeaTwix . I’m just at the beginning of this journey with my DM who is losing capacity but it’s all very subtle so far. So I have no advice that you haven’t already thought of, but solidarity. No one who hasn’t cared for an elderly relative, gets the frustration and emotional exhaustion of this situation.

Not to reignite the terminology discussion, but my DM always refers to herself and friends as ‘oldies’ and she’s never used derogatory language about any group of people.