The new shiny 2019 thread for anyone caring for elderly parents

[thesandwich]

Continuing the long running series of threads. Pace yourself, it's a marathon not a sprint!
This is a safe place to offload- don't be embarrassed about how you feel. No judgement here
There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!
And a few laughs and the odd cockroach or gin....

yes thigh absolutely no joined up thinking in elderly care - but I also think potentially the same in areas like cancer. with dh, we have an assigned cancer care nurse, and she's lovely and quite kickass, but because its all multidisclipnary there are inevitably gaps. With older people though, it seems to matter less.. like they're old and going to die anyway. which is not necessarily untrue, but it would be better if they could all have an easy passing.

yolo yes i was wondering about cancer and other complex illnesses. It's great that your DH has an assigned nurse, hopefully that deals with at least some of the potential for dropping important information. It's like a terrible jigsaw and no one has the box. I would have thought the joining up should be a GPs job. We're all raised to be proud of and grateful for the NHS but when you really get up close the gaps are life threatening.

I suppose it's true, the olds are only going one way but need it be with unchanged urine soaked hospital gowns, bed sores, wrong medication etc etc etc

There is money but it's going on pointless political shit and quangos. Blah blah.

There was a report out earlier this week which said ageism was rife in the UK (not news to us on MN)
www.theguardian.com/science/2018/dec/26/uk-is-completely-and-institutionally-ageist
... "For example, a younger person with brain damage will have a care plan from the NHS that includes maintaining links with their family and accessing education.

“An older person with the same level of functionality but suffering dementia, however, will have a social care plan costing many thousands of pounds less a week, which is based entirely around getting the older person out of bed, washed and breakfasted, all in half an hour."

That brought it home to me. That they could even think of having my father live in his front room with a commode. There's no hint of any rehabilitation services to get him able to be out and about on the buses again, or using his computer. It's immoral to condemn someone to that sort of existence, and then make them pay for it out of their own money.

The other gap in communication is with the family. We're seen as a resource to do the bum wiping and keeping watch over someone (twice they've sent for a fairly unnecessary ambulance then handed over to me to stay with him for the 8 hours till the ambulance arrived) but they were happy to keep him in hospital for an extra week for lack of a downstairs armchair without thinking to ask me whether we had one available.

yolo thanks for the clarification over pals. Always thought they were more proactive - I'm learning quickly! It took 1/2 hour yesterday (and 3 goes of me kicking up a fuss) for someone to check on mum's swollen hand. No-one could find the nurse for her room apparent she was on her break with no-one covering a room of 6 patients! Turns out the canula had slipped and fluid was leaking into the tissue. She's on steds now for her breathing and seems better but I'm scared to allow myself to see improvement if that makes sense. New day today so we'll see.

Dint "washed, dressed and breakfasted in half an hour". It's not much more than I do for my dogs, it's wrong. Of course I love babies and children and want them to have the best care, but it should not be either / or.

I'm so distracted with either caring, managing care, worrying (necessarily) about meds etc, and phone calls that my earning and parenting power is zilch.

Olds are living a very long time in crap health so the old v young debate starts not to apply. If I moved in (which I won't) and did 24/7 everything re Dad would be so much better. But mine and my family's life would be destroyed.

And the funding isn't fair, why should the NHS cost money only for old people? My youngest gets free things due to being disabled, why doesn't Dad? If you want to be a bastard Dad has paid tax and my youngest hasn't and maybe never will.

Is this a feminist issue? By and large it's women taking all the calls, wiping all the bums. Meanwhile ruining our careers and keeping us down. Obviously it's not a plot, it's just women are last in the queue.

One consolation is that I'm so fucking worn out I won't need any shit elder care myself.

I think yes it is a feminist issue, women are the ones bearing the brunt

my parents have been in and out of hospital lots since I was 16

an incident from long ago was our worst, mum wasn't old then.

I was looking at her medical chart - which of course a lot of people won't do, they will trust the staff - and I found a medication marked for her to take that she absolutely mustn't have with some of her underlying health problems.

the bizarre thing was, it wasn't even for her treatment, it was written there because....well who knows?! Sadly, it was 4pm on a Friday afternoon when I found this. So I told a nurse who looked fearful and said "the trouble is, the admin team have to change this, I'm not allowed to". So I asked her to show me the admin office...when I walked in and explained, a smirking member of staff told me they couldn't change it till Monday morning.

So I said "you are seriously telling me that you can't be arsed to print out another chart so mum might die after taking a med she's not supposed to take?"

she carried on smirking at me and another person quietly said to me, I'll sort it out.

my dad had to stand guard and explain to another nurse, doing meds, that although it was written down, mum couldn't have it. If two of us hadn't been there, I think mum would have been given it that Friday evening.

that particular hospital went into special measures and from our experience with dad, it has got better - famous last words. But one of mum's concerns about me maybe moving into her area (she still doesn't know I'm thinking about moving in with her) is that hospital situation is shite.

Because I'm in outer London I seem to have access to better care, I've had a couple of injuries and pneumonia in the last ten years and was looked after. Also the GP situation is better in my area than hers - which is funny because her area is much nicer, but I wonder if that means a lot of people go private or something.

her neighbour was saying to us that London hospital provision is much better than the rest of the UK, no idea if that's true.

Grace - I'm in London, too, and my sense (although I have no hard evidence to bear this out) is that our GP and hospital provision is worse than elsewhere. With GPs, it seems to be because it's hard to retain them and so our practice is under so much pressure (so oversubscribed, really) that it's very hard to get an appointment. My mother, who lives farther out, fares better because of course as an oldie she gets priority. Because our nearest hospitals are teaching hospitals they are in effect national resources and, again, my sense is that they're under greater pressure and more oversubscribed than smaller hospitals in the shires. The teaching hospital in which my father died has very poor ratings from the CQC and would probably have a new management team imposed on it, if it were a school.

Thigh - I think all of this is very much a feminist issue. Middle-aged women are having to take up the slack because neither the NHS nor social services can provide comprehensive care and middle-aged men don't, for the most part, think it's anything to do with them and are anyway "too busy". I may be projecting a bit here.

Just wanted to say hi I have cared for two elderly and I'll parent's who I miss dearly I'm also a professional in the caring arena so pm me if need advice or have questions about assessments, chc, care, respite advocacy

Ill soz

Monica yes, I wonder if some of it is just sheer luck, for what borough you are in, the timing of health issues, the professionals in charge of your case etc.

user thank you, sure a lot of people will find that helpful
my main thing at the moment is wondering if my mum needs care, and we are paying, would SS be involved at all? She and I both rather hoped that if it came to that, we could just pay for care and not do mega form filling or having strangers come and make rules about things. Or do SS just automatically get involved because there's a vulnerable adult?

Hi if your mum chooses to pay that is fine,however it might be worth getting an assessment for care, as the rate you pay per hour for care related tasks via a council tends to be cheaper as they block purchase care - if she wants privacy I.e cleaning and some care it could be bought privately however where she lives could determine which route you take and how you move forward pm me if you like

thanks user - I hope this is a way off, we were just pondering, but thank you.

Local councils should be looking at emotional and social well-being too so an assessment shouldn't be awful it will give you the opportunity to have a carers assessment if doing a great deal for her - councils vary, some still only support those who are what used to be called critical so cannot manage without help and support, to eat, clean, toilet, get out of bed - they will do a financial assessment and if she owns her house lives alone or has tenants in common arrangement this will affect what you will pay

Grace i just looked into costs and our Borough said £50pcm rolling admin fees plus £19-25 ph for care. In the borough you pay a cleaner £12ph so would have thought crossover care/ cleaner should be £15ph. We've decided to up the hours of the cleaner a lot as M&D already know her and we all like her. She can bring her kid if she wants to and will pop to Boots, M&S etc. Someone from SS emailed me all the private options and i didn't think they were any better than Upping the cleaners hours substantially. Really cleaning or housekeeping is a large part of what they need ie buying or cooking meals, serving them, clearing up after, keeping laundry ticking over, keeping the house clear and safe. Plus she gives company and a laugh and phones me if it is worrying. The cleaner used to work in a care home so is also prepared to have a look and decide to wash the olds rather than the floor that day.

Grace when i said we would make our own arrangements SS closed the file or made it dormant. If you don't need SS funding you can just be autonomous. That's what we've decided for now.

thigh thanks, that's what I was hoping.

thigh did you go to out of hours today? Hope your dad's meds got sorted.

absolutely your mum must do what's best for her - just giving you the other side of the coin if you went through ss :)

Grace i called 111 and got him put on the district nurse list for his GP surgery so he will get a visit re bum sore. 9 weeks out of hospital and his pressure sore is still there. The skin isn't and hasn't been broken but why no better after 9 weeks? On Monday if still no contact from cardio i am going to cardio unit at the hospital to find the fucker. I don't see the point in trying to explain the potential cock up re meds to randoms over the weekend.

thigh that makes sense.

I kind of agree that the private route is better and gives you much more autonomy, but only up to a point. The SS assessment is useful to have done, as it gives you a lot of pointers about the type of care needed.

The thing with private ones (at least, I found this) is that as soon as the oldie becomes a bit too difficult or frail, they dont want to know and will back right off very quickly. So if you dont have SS carers in place you could be landed with a sudden no care situation if the worst comes to the worst.

Our cleaner/friend was wonderful, as was the gardener, and I think they would have stayed through thick and thin, but cleaner couldnt up her hours so we went to an agency. Brilliant for a good few months, but as soon as mum got tricky it went very tits up.

If you can work it so you can have the SS carers visits and then top up in between it could be ok. however we had that for a little and mum managed to fall over between one leaving at 9.15 and the next arriving at 11.15 (at this stage she wouldnt go into a care home).

we spent this afternoon in A&E with DH - chest pain and very high temperature after his bronchoscopy on Thurs. got in and out within 2 hours because temp right down and after ecg they said chest pain was muscular. apparently, once you start chemo you get a kind of 'cancer card' which fast tracks you - told DH it sounded like what you can buy at Disneyland!!

My mother, who lives farther out, fares better because of course as an oldie she gets priority. Ooh, that's worth looking forward to! - when do you become an "oldie"?

Can I just check up on financial contributions to care in the patient's own home? Am I right in thinking that savings override income - ie, if you have over £23000 savings you have to pay it all yourself, even if your income is low, until such time as your savings have dropped below the limit, and then they'll start seeing if your income is too much for you to get financial assistance.?

I know that while you're still living in the house, that doesn't get included in the calculations.