So bloody exhausted waiting for someone to die...

[Poochypaws]

Nobody tells you how utterly draining, exhausting, depressing it is waiting for someone to die when the death has been 'expected' for years. Got told 4 years ago person might die as soon as 6 months but might be lucky and have a couple of years. Ok. Spent the next year spending every possible minute with them. Watched all their favourite movies with them. Listened to their favourite songs with them. Talked about loved ones and memories. Took them for lots of nice walks/outings. Basically put my own life on hold and compromised my own health to give them a nice 'ending'.

Except they didn't fucking die did they. So much for doctors predictions.

At first I was glad to have extra time. It felt like a gift. It felt like we had stuck two fingers up to death. As time has gone on though and the person needs everything done for them (EVERYTHING!) but still they linger on.

They go into hospital (about once every couple of months)- carers have to be cancelled, shopping has to be cancelled, perscription deliveries have to be cancelled, constant phone calls from hospital nurses ' can you bring this in, can you collect dirty washing, when are you visiting'

Then they are ready to come out of hospital. Carers have to be found and reinstated and everything else has to be put back in place.

Meanwhile having agreed to go into a carehome (social say person does now need 24 hour a day care) person has now told social they don't want to leave their own home.

Everyone around them (ok not everyone, just those involved) are on their knees with ill health, mental stress from the constant waiting, exhaustion from never knowing what is coming next and still the person keeps hanging on.

On about 30 tablets a day, requires washed, fed, dressed, help to leave house, taken to all appointments, all housework done, all admin done, entertained and you never know from one day to the next when the next fall or hospital visit, dentist emergency, optician emergency, will be. They are not like 'normal' people going to the dentist twice a year. They seem to need to go every month so their appointments are about 10 times those of a normal person. Constant infections, bleeding, bruising, swollen ankles, can't breathe, can't eat, can't sleep and still they go on.

Why god, why! I fear I might die first from the stress.

For those of you who have been asked by your gp or social or a nurse to 'help out with your parent' because they probably don't have long left anyway (ha, bloody ha) Think long and hard. Really long and hard. If fact don't think just turn the other way and run.

The NHS seems hell bent on keeping old sick people with no quality of life alive as long as possible even though the trail of destruction behind them far outweights the benefit of keeping them alive.

I used to see people at funerals and assume they were all sad. Of course people at funerals for young people will be sad. Now I realise for those who have elderly parents who have lingered and lingered and lingered they are not sad at the funerals they are RELIEVED. GLAD. Probably cracking open the bloody champagne in the evening.

For those of you who have never been in this position for years you have NO idea what you are talking about so don't bother commenting. (I had no idea before I did it and would have thought differently)

So tell me who is benefiting from this shitshow.
Old person - nope miserable, ill and poor quality of life
Anyone helping - nope, miserable, ill, poor quality of life
NHS/Social - resources being used HUGE, benefits ??

Finally in last few weeks I have taken a stand and withdrawn support. Literally had to shout at social and hospital nurses who seems to ignore the fact the 'carer' is having a nervous breakdown telling them to 'carry on what they are doing'. NO. NO. NO.

This will force a care home entry which is what is needed. NEVER AGAIN.

Solidarity to all who are caring. My friend has a frail, elderly neighbour who refuses to engage with help, despite having the means. They tend to fall, with increasing regularity.

In lockdown they were classed as vulnerable so-rightly -everyone rallied round and this set the expectation that this was a permanent arrangement. Family are also retired and not nearby, possibly being given a cheerier version of events than the reality. I’d imagine they think this person is managing very well, thanks to the kindness of the community holding things together.

Sadly neighbours have been forced to call for a first responder/ambulance when they fall while also hoping this will get them ‘into the system’ and get SS/family to help them. This person has little real quality of life and but they could have if circumstances were different. So sad.

that sound unfortunate but SS doesn't make decisions on any carers allowance, DWP does
And I can agree with you that, sometimes, social workers are not good at their jobs but I think majority of them do what they are supposed to do

She sounds like my MIL. We were also told she would dies within days. But she didn't and now she can't read, write or talk, is paralysed down one side, is incontinent and has seizures. 1/2 years she's been like that, 10% of her life.

I expect the poster is referring to a cash allowance that Ss can give so cate can be paid for directly. FIL had one to cover a few hours a week si he could go shopping, to hos own appointments etc. SS paid directly for 4 visits a day to MIL but he had 8 hours a week paid in cash so he could use it as needed. Some weeks he might use only a couple of hours for shopping, another week he might use 2 days of he was having treatment or a day out.

Carers allowance rates are decided by panels of social workers from the local council. Nothing to do with DWP.

@countrygirl99 thats exactly it. DM has a carer twice a day to get her up and to get ready fir bed. She is entitled to 4 visits but dad found it too much.
the carers allowance is paid at two rates - day or enhanced. That means night care. Although apparently the fact that she can't get into or out of bed on her own and can it be left unsupervised doesn't mean they can claim it.

Carers’ allowance is a benefit paid at a standard rate by DWP to those who qualify, throughout the UK, and is not linked in any way to social work services. You may be thinking about direct payments maybe?

😂what?? where did you hear that?
the process is the same as every benefit, you fill out the form and send it to DWP they send it to the appropriate unit , in this case the carers allowance unit and then the decision maker awards the allowance based on a points system
at no point is there any "panel" of social workers or local council involved in the process, that is ridiculous

Ok that makes sense

Nope.
the form was sent out by, returned to and decided on by our local council.
maybe you would like to stop arguing with me when you clearly don't know what you're talking about

truthhurts You arent alllowed to claim state pension and carers allowance at the same time

Continued solidarity to everyone on this thread. MIL looks like she’s at the end (Stroke) and has advanced dementia. She was a wonderful woman but the past two years have been no way to live a life. I’m utterly convinced that being her carer finished off FIL who died in may. Both of them gave their working lives to the nhs. Neither of them have received a modicum of professional courtesy during their hour of need. I feel so frustrated by it all.

MIL’s situation is a salutary tale about not putting off LPA’s. To anyone reading whose currently elderly parents have capacity but do not have an LPA in place, please have that difficult conversation with them. Many elderly people are under an illusion that there is some sort of state care facility, do not understand the current cost of care, or the fact that if they lose capacity the choices available to the family are non existent.

I with you all regarding dignitas.

DWP decides

Please could you elaborate on what is means if people lose their faculties there are few choices ? Thanks

my 87 year old DM is struggling and in an incredible amount of pain Its due to 50 years of working in factories and old age. And very hard of hearing now. But has all her faculties.

@StopStartStop "When my dad was in a similar situation caring for my mum, and it was too much for him, I wrote to their GP and to adult social services. The GP visited them at home, a care home was arranged. You could inform the authorities, out of your concern for your DP"

The authorities are involved, he has carers 4 times a day. He was placed in a private care home for a 2 week trial in the hope that he would enjoy having company and would want to stay, but after a few days, got upset and said he wanted to go back home. So that was that.

I don't know what else can be done.

@Fruitynutcase MIL cannot access her money (she has dementia) and because of no LPA or the ability to add anyone to her accounts (because quite rightly you need capacity to do so). So neither can my DH. After her carer (FIL) passed she was placed in an emergency care home as she was not safe to stay at home and SS agreed this. However, This is not the place DH or his sibling would have chosen for her (the level of care, quality of care and location - she is a 5hr round trip away) but without access to her funds/ability to sell the house they have had to take whatever was on offer. We either took the place or that was it. Like many, we don’t have a spare £1600 per week to pay for alternative options endlessly and without a house sale on the horizon or access to her own money we are stuck with the emergency placement. And then your pension stops. Once you are assessed as being a ‘self funded’ there is only a limited amount of time to use the deferred payment scheme. This does not match the speed at which the court of protection moves at. Applying to be a deputy is a paper based system which you cannot file on line. It is 70+pages, needs to be printed off more than once and the payment can only be made by cheque. So far we’ve had it all returned twice because of a box not being checked etc.

No health LPA means that if there is no capacity the doctors make the decisions, not the family. If you strongly believe in the sanctity of life (as an example) Doctors will take the decision to DNR regardless of beliefs.

If a financial and health LPA had been in place, MIL would be in a care home near to one of her children, would’ve received daily visits, would be taken on days out, received stimulation, targeted specialist care and fresh air. As it is, she’s had none of those things. And not for the want of trying. Both children work FT and are doing their best but this is not what they wanted for their mother either but even going halves is not an option. They’d be happy to sell the house but they are not entitled to do so. Plus the rural location and general condition of the property would not leave it in the ‘desirable’ category.

An LPA would’ve avoided all of this and given choices to those she trusted. LPA’s are a good idea regardless of age frankly - you can’t predict what is around the corner.

I*dentifyasweirdbarbie
*
Thanks for your reply . Very interesting and helpful.

Poster has already clarified that she was talking about a care budget paid directly to the recipient by social services
Big deal she used the incorrect terminology bit it's actually very common. Paid thos way the recipient can flexhpw they use the budget. When my FIL had it as MIL cannot be left alone it was a choice of SS pay direct and if he doesn't use it all 1 week it's lost and he had to pay if he needed extra or they gave him the money and he could save it up for weeks he needed more.

Really interesting thank you. Awful situation for you all , what will happen? Surely at some point you will be able to access everything? Good luck xx

I hear you OP. Caring is hard. Services love to tell you the person you care for needs x and y and z and they expect you will facilitate it. Meanwhile your own employment, social life and health suffers because there's no time for it. They seem to forget carers are people with needs too.

@Changesarecomong i’ve no idea really but suspect she will pass before the COP application comes in and then we’re into probate territory. But before then we’re likely to have a large care bill (she is self funding) that might need paying before probate comes through. It’s worrying and frustrating that this was all so completely avoidable.

Like loads on this thread, what the inexperienced to all of this might perceive as ‘state help’ (‘she paid all her taxes’ etc) really is non-existent whether you have money or not. The system is just utterly devoid of a holistic approach to facilitate sharing of the caring burden (and is it a burden, no matter how much you might love your relative) and the Family is expected to put everything on hold, the cost of which emotionally and financially is just enormous.

Until you’ve walked a mile in someone’s shoes, you should not judge their response to all of this. As I said up thread, until someone very senior in government actually experiences any of this first hand, nothing will change.

And if you do get state funded care it will only be in a home if 4 visits a day aren't enough usually meaning night care is needed. If you are getting care at home it won't cover cleaning, maintenance or household/personal admin.

That's such a good point about everything else to do with running a home not being covered. We're paying a lot for live-in care, which obviously relieves us of this burden and if we had to do would be incompatible with any life outside of it (both parents need pretty much full-time care).

There was one week when the TV went on the blink, the fridge stopped working and the boiler broke. All of which took hours of ringing up Sky, sorting out a heating engineer, dithering over whether they were being ripped off etc. And that's without something major like the roof needing fixing. I remember a friend saying her elderly mum's admin took up 10 hours a week and I was, like, god how? Now I'm, like, only 10?

All the boring shit that has to be done in your home but in someone else's, at a distance of 80 miles, with obstacles ("am I talking to the account holder?", "can you just pop the account details into our app" ad nauseam). When I make the journey to them I have a list of crap that needs doing and my mother gets all mournful and says, why are you always so busy you never sit down and talk to me. But the tasks need doing. And, in truth, I'm better as a doer than a sit-down and chatter, especially to a mother who was never interested in my life nor that of my children and doesn't make any sense.

@Valleyofthedollymix your mum sounds like mine. She always asks how my boys are but I know she's not really interested and if I say something like DS1 has a new job she never asks what it is or anything about it but goes straight back to talking about herself so I know she's only asked because she thinks she ought to. It gets very wearying. There are 2 reasons I go up in the evening:

1. for her benefit as she gets sad and lonely in the evenings so company helps.
2. my benefit as I can't stay so long with the same topics on a 10 minute cycle. And always the same ones every visit. After 2 years I want to scream "yes, a thousand times" at "did I tell you how I met your dad". But I smile and nod and by the 5th time each visit my cheek muscles ache with the effort.