Elderly Parents and Care in their own home

[Guardsman18]

Hi. I need some help and hope that by asking here someone may have an answer. I'll try not to make it too long!

Mum is 80, Dad is 85. Dad has cancer and has had surgery but was told by consultant last month that he didn't need to see him any more as there wasn't anything further they could do. He was upset by this and seems to have rapidly gone down hill.

Mum has a heart problem (valve replacement years ago but is too old now to have another op.) She is his main carer eg washing, dressing, toilet accidents etc.

She had to go into hospital on Wednesday having suffered a heart attack, begged to be let home as worried about Dad. (My brother and I were with him but he took imodium and didn't wash which is ok for just a day).

Mum probably had the attack because she is finding it very difficult to wash him etc so carers are now going there tomorrow to wash him. Great. At least they're accepting some help.

Mum has been told that this care will be for 6 weeks and then they will have to sort out private care.

Is that correct? Dad is terminally ill. They are not wealthy by any means but will pay obviously as it's too much for Mum to do. Wondering about NHS continuing healthcare.

Thanks for reading. This is all so new and I want to do what is right for them.

You'd be better having this moved to the the Elderly Parents topic, OP. You'll get great advice there.

I'm sorry to hear about your parents. This is such a tricky time and so hard to deal with.

I also suggest you have a look at the Age UK website. Great source of advice and help. Finding care at home - www.ageuk.org.uk/information-advice/care/find-care-support/

They also have a benefits calculator - your dad should qualify for attendance allowance at the higher rate. www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/benefits-calculator/

Thank you for replying. How do I get it moved? I put in 'Elderly Parents' and it asked me to start a new thread in this topic. Oh gawd!

I saw something recently where it was stated that they say this but can't follow through.
You should still get NHS care.
So many people don't know this and assume they are being 'honest'.
I have no idea who you speak to about this though.

Ask for continuing healthcare assessment for your dad, this is nhs funding and not means tested social care.
Also get advice from ageuk regarding getting benefit checks for your parents.
And an OT assessment for equipment.

Report your thread and MN will move it.

Yy to the Continuing Healthcare Assessment.

Social care such as washing, dressing, help with food, is usually means tested, so that with some savings (I think over £23000) you have to pay yourself, but when someone has other health ongoing needs, then the rules change and it can be covered on the NHS.

OT checks are wonderful. It can take a little while to get assessed so get on the list pronto, but then all sorts of useful equipment and handles can be provided.

Best of luck

I am so sorry your family is having to cope with this.
Who told your mum? Was it someone involved in setting up the care directly?

With a diagnosis of cancer there are a lot more options for free carers and support than other diagnosis.

Macmillan nurses
Marie Curie and Maggies are all excellent services.

There are often local hospices that are charity funded that offer free care once the diagnosis is terminal.

If you are in the Wiltshire area Dorothy House is superb.

Hi - OT here.

I'll try and answer as best I can.

Sorry you're going through this, it's really hard isn't it?

It's true that it's likely to be up to 6 weeks of care then if Dad has savings of over £23.5k then yes he would pay for home based care.

If he's end of life or in need of Nursing care then this would likely be done by NHS.

The 'good news' is that if they pay for it, they can have more choice about who they have, what they have and the timings of any visits.

Apply for the NHS Fast Track continuing healthcare assessment, for people who are terminally ill!

Your father's consultant should know about this. He has to fill in a form, confirming your father's terminal illness.

There might be a Fast Track for attendance allowance too? There is for PIP for younger adults, who are terminally ill.

Your mother should have had a carer's assessment, via Social Services. They can charge for services to carers, but some local authorities don't? Put in a request asap.

As I thought:

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/attendance-allowance/claiming-attendance-allowance/claiming-attendance-allowance-terminally-ill/

Thank you all. OT - at a guess I would say that they had £23,000 +. Personally, I think he should be in bed but is insisting on struggling. Very hard to watch.

He's obviously dying but am I right in thinking that the consultant would have to say for example - you have 3 months to live? Hope you know what I mean!

So if you're terminally ill - does it matter if you last 6,7,8 or 9 months for continuing healthcare? @Guilin. thank you

The NHS guidance just refers to a rapidly deteriorating condition, entering a terminal phase. A friend of our's got it, after being diagnosed with Stage 4 aggressive lymphoma - although actually she lived about 15 months, what with chemo and radiotherapy. She also got PIP Fast Track.

NHS CHC funding is free at the point of use, like everything on the NHS. Your parents could have millions in the bank, and still get it! There is no financial assessment for it, at all!

(Our DD gets NHS CHC funding, although not via the Fast Track, as her condition in severe and life threatening, but not terminal)

Yes fast track nhs funded care is very much 'end of life' being cared for in bed type care.

Sorry this sounds so blunt, but it's really for input at that point.

Daily support for washing, dressing etc is deemed as social care and means tested.

Worth requesting OT assessment via GP. If he's at risk of falls that should speed things up.

Actually I've just confused things sorry.

Consider his'needs'. Is it nursing in bed or something only a trained nurse could do?

If yes then this takes it the nhs route. We do some end of life care and the patient doesn't need to apply for any funding.

If not then it's social care.

Start with what he needs and go from there.

Thank you for the info. I understand now. They're in denial a bit so will probably have to let them get on with the 6 weeks and then pay for a carer.

I'm glad I asked though because at least I know now that when it gets worse for him, there is help available. My poor Mum will be dead before him the way it's going. This is so hard

Well you're doing everything right. There's often no 'right' way to do things at this point - just a set of options that you'll feel guilty about whatever you do!

Right OK it sounds like a bit of a confused picture at the moment.

Who has arranged the 6 weeks care? I'm assuming someone must have asked for it (who?) and someone must have arranged it (either the hospital or social care) and be paying for it (either the hospital or social care?)

The statement 'after 6 weeks they will have to sort out private care' is most likely incorrect. If they have eligable social care needs which it sounds like they do then they are entitled to a full assessment of their care needs under The Care Act which should include an assessment of your mother's caring role for your father.

This assessment should also consider any adaptations or equpiment they may benefit from.

The assessment should feed into a support plan being developed with your parents to guide them into agreeing a level of care they need/want they may have to pay the full cost of this care package if they choose to accept it, but they can't just be told to arrange it themselves just because they happen to be able to afford it.

The social care assessment will also screen your father for eligibility for NHS continuing healthcare. Social Care have to rule out potential eligibility for NHS funding before they can commence with financially assessing for social care services. On the basis of the information you have provided I suspect it is highly unlikely your dad would trigger for NHS continuing healthcare at this stage. It's based on having very complex care needs rather than diagnosis (I believe the one exception to this is a diagnosis of vCJD).

Another thing to think of if you haven't already is getting lasting power of attorneys sorted out for both of them if they both still have mental capacity to agree.

Otornot

No, our friend was not in bed, needing nursing care until the end. She had 2 carers come three times a day to get her out of bed, bath her, get her dressed and get her meals for about 8 months.

If the care needs arise out of a primary condition, then even if it's help with washing, etc it's CHC funding. It has been accepted by the DWP that DD lives in a residential care home, cared for by care staff and only sees the onsite nurses, as and when required like anybody else - therefore she gets DLA mobility at the higher rate (and there was a court case about this). However, because all her needs for supervision 24/7, prompting to wash, dress, challenging behaviour, etc arise from a primary health condition, she gets CHC funding.

Social Services may well not put your father down for an assessment for NHS CHC funding, unless you insist on it, because social workers often do not understand NHS CHC funding! (And I get the impression they don't want to rock the boat with the CCG) The amount of misinformation I got from DD's social workers about how she did not qualify for it....

Yes sorry I confused everything with my posting. Been a tricky week and I shouldn't have tried to give half baked advice. Apologies OP.

Guilin in my experience social workers have indeed historically tended to have a much better understanding of applying the CHC checklist to older adults than they have done to younger adults with LD or complex physical needs. The was largely because of the prevalence of 'pooled funding' between health and social care which meant rather than going down the CHC route the NHS and the LA had an pre existing agreement just to fund all complex under 65s on a 50/50 basis rather than waste resources arguing over who should be funding what.

That is changing rapidly with the advent of the Care Act and huge cuts to CCG and council budgets. Both sides have battened down the hatches and are trying to avoid funding anything at all they believe the other side should be funding. In my local authority we now aren't allowed to place ANYONE in residential care without first screening them for eligibility for CHC funding. Even if they didn't have a full grasp of CHC funding previously, they most likely will now. The battle lines have well and truly been drawn between NHS and social care at the very time they should be working together.

I'm not saying you are wrong just that the narrative has changed hugely in a very short period of time, and it may be that the experience you had wouldn't be the same if it was happening right now.

The reality is though (rightly or wrongly) that unless someone has very complex health care needs, or is eligible for fast track CHC then most caring tasks carried out in a person's own home (the subject of the OP) will be considered as social care needs and not health needs.

Yy to helping your mum apply for attendance allowance (not means tested) and carers allowance too, to which she may well be entitled.

And he may well be entitled to council tax relief too, so your mum could then claim the 25% Single occupancy reduction. It can all add up/help.

Sorry - just remembered the best advice I was given here, which is that if you don't have power of attorney for your parents yet, now is the time to get that going if they are willing. It really is a very simple process and a very useful "just in case" document to have.

Well, the OP's mum was not given the correct advice, saying they will have to fund all care privately after 6 weeks - when surely that can only be determined after the assessment of need, and NHS CHC Screening Checklist have been done; and then the financial assessment?

I can assure you, last year DD was getting £1,000 a week, worth of help with dressing, bathing, meals, etc under CHC - until the residential placement was ready.