PILs have cancelled carers and are now asking when we can visit

[StillNiceCardigan]

FIL is in his 80s and has Alzheimers and MIL is struggling to manage. We live 4 hours away and visit regularly but can't be there day to day. I'm devastated that they've cancelled the carers they had agreed to after one visit. Help me feel less angry at two 80 somethings who have just made life considerably more difficult for everyone.

This is going to be very hard, OP, but it is the only way. My mother was forever looking for excuses to get me to do her care (she did end up with Alzheimers but she was disabled for many years with full capacity before then). In the end we had a really terrible day where she sent the carers home and then told me, when I arrived, that she'd sent them home so I would do it, despite me having made clear to her that I was no longer prepared to do toileting and arranging care with her. I had to refuse to do it. That was a VERY hard decision and I felt absolutely terrible, even though I had just reached the very end of the road with it and could not do it any longer without massively prejudicing my own mental health.

But, and this is the important thing, it only happened once, because it did make her understand that I was finally sticking to my boundaries. And our relationship was better for it in the end, I think.

I think you and your OH should sit down together and decide what you’re prepared to do and what you’re not prepared to do.

for example, you can visit as a couple on one weekend day per month and your husband can go another time in the month in the week. On the visit days you will arrive on at 11 and stay until 7. During that time you’ll do whatever jobs they need- cleaning gardening shopping etc. If they need more help than that it’s over to them to sort it.

If they ask for more care than that just repeat that you can go twice per month and do whatever jobs need doing on that one day. You can’t do anything else. If they need more care they need to find someone else.

Repeat over and over every time they mention it. You’ll have to have very firm boundaries in place.

In your case, you need your MIL to understand: you're four hours away, you cannot and will not provide this level of care. If she sends the carers away, she's doing it herself or finding someone to do it who isn't you. And mean it.

Vent away, plenty of people do have experience or empathy of what you’re going through here.

Not at all. Plenty of us get it - don't worry.

Unfortunately they all seem to say no to everything. I've been there and you just can't win. Often it's a matter of waiting for a crisis before they accept help, and even then it's challenging.

This is a place where you should feel safe to vent as caring for elderly parents, no matter the circumstances, is bewildering and frustrating.
At some point, they become like children at times, and you end up becoming the parent.
I appreciate some elderly parents are independent until the end, but my experience of speaking to every friend I have who has had to provide care at some level is that they are demanding.
It is a real point of pride for them to say to someone ‘oh we don’t need anything our son does it all’ or ‘no you can go my daughter does everything!’
I am without both my parents now and don’t know how I got through it. My late DF would bat away everything. I lived five minutes away and when I wasn’t there he was calling me.
Can I end on a lighter note to just reassure people they aren’t going mad?
Took a phone call one whole day when I couldn’t be there and DF said there was hardly anything in and he was too ill to feed himself. I persuaded him to make some toast, rang my DP, who said he’d call in after work and cook dinner at around 6.30 pm
DP was early. Let himself in and there sat my dad, with a full fry up on his lap, watching ‘The Chase!’
They will literally have you every which way but loose…

PP said
also are you getting the 25% on council tax for him? as he has SMI, if not check out how to get it or ask
People with serious mental impairment get 100% discount and a GP or other HCP has to sign a form to confirm when SMI started. The discount is backdated to then. Councils do not make this obvious but there will be a form somewhere on the local authority's website. This also means if it is a 2 person household the 2nd person is eligible for the single person 25% council tax discount as the other person is not counted for council tax purposes. I know this because I got it backdated 2.5 years for my mother INFO HERE https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=www.gov.uk/council-tax/discounts-for-disabled-people&ved=2ahUKEwik2Laxhc-HAxW0Z0EAHfVyDpsQFnoECAoQAQ&usg=AOvVaw0bJiH9p6NmQa_EcNbQm2V-

This is such a common situation. Everyone with elderly parents will have been in the same boat. No one wants help or carers.

You have to lose the anger and just respect their decision. Of course they will struggle and at some point be it 6mths or 2yrs you'll have to revisit the home help situation.

Until then, visit when you can, rope in any family for welfare checks and take it from there. Don't be angry with them though.

https://www.cheshireeast.gov.uk/counciltax/reductions/council-tax-reductions-for-occupied-properties.aspx#disregards this show the link for disregard for SMI in my area
As long as attendance allowance is claimed which PIL will be eligible for he will get disregarded for council tax People with severe mental impairments which appear to be permanent
You might be able to pay less Council Tax if someone in your household has a severe mental impairment. The reduction you can get is set by the disregard rules.
For the purpose of the reduction, a person is classed as severely mentally impaired if they have ‘a severe impairment of intelligence and social functioning (however caused) which appears to be permanent’. This definition applies only for Council Tax purposes and differs from that of the Mental Health Act 1983.
To get a reduction, the person must be able to get one of these benefits or allowances, even if they don't claim it (for example, because they are of pension age):
Severe Disablement Allowance (SDA)
Unemployability Supplement
The disability element of Working Tax Credit
Disability Living Allowance - higher or middle rate care component
Attendance Allowance (AA)
Constant Attendance Allowance
Incapacity Benefit (IB)
Increased Disablement Pension for constant attendance
Income Support that includes a disability premium
Employment Support Allowance (ESA) (Limited capacity for work related activity)
Personal Independence Payment (PIP)
Universal Credit (with a limited capability for work or work-related activity element)
How to claim a Council Tax reduction for someone with a severe mental impairment
There are 2 steps to claim this reduction in your Council Tax.
Step 1 - the medical declaration
You will need to download and ask your doctor or medical professional to sign and stamp the medical declaration form (PDF, 173KB) to confirm the impairment.
The doctor must be satisfied that you meet the definition above before signing the declaration.
If the doctor needs more information they may speak to medical colleagues, or carers who know you and understand your condition. If they are still uncertain that you are severely mentally impaired, the doctor should not sign the declaration.
A decision about the presence of severe mental impairment will, in all cases, depend on the doctor's clinical judgement. In the event that the doctor is unable to sign the certificate you may choose to approach another doctor.
Step 2 - the application form
You will need to upload:
the completed medical declaration signed by a medical practitioner and one of the following
proof of when your benefit entitlement began or
proof that you have now reached pensionable age, if you are not claiming any benefit, for example a copy of your birth certificate, driving licence or passport
You can submit the application before you send the medical declaration form and without evidence of your benefit eligibility, but we won’t be able to assess your claim until both the declaration and evidence have been uploaded.
Apply for Council Tax reduction1
Associated Reductions
If your property has any features to accommodate the needs of the severely mentally impaired person, you may be eligible to claim disabled band reduction. See the People with disabilities option for more details.
If someone living in your property provides care for the severely mentally impaired person, you may be eligible to claim a carers reduction. See the Carers option for more details.
Long-term hospital patients and care home or hostel residents People with disabilities Child Benefit is still being paid for 18 and 19 year-old Carers Care leavers Care workers Apprentices and youth trainees People in detention Job-related second homes and Armed Forces Everyone is under 18 years old Annexes lived in by relatives Members of religious communities Partners and dependants of overseas students Foreign Diplomats Members of visiting armed forces, international headquarters and defence organisations Property held as living accommodation for UK armed forces
What happens after you apply
We'll get back to you once we have looked at your claim. This can take up to 20 working days. It might take longer if we have to visit your property or need more information.
You must let us know straightaway if anything you have told us changes.
Reductions will show on your bill as for the whole year even when they are only for a fixed time period. We will send you a new bill when the reduction is coming to an end.
Reduction Reviews
We review claims regularly to make sure that our records are up-to-date and to help identify fraud. You will need to quote your Council Tax account number when completing the review form which will be located on the email or letter you have received. Cheshire East Council Tax account numbers are eight digits long and start with a 6 or 7.

Everyone with elderly parents will understand. This is really common and I understand what you are dealing with.

Step back.
Mind your health.

I would recommend you invest a bit of time in finding out what went wrong with the carers and encouraging them to accept them to come again. Maybe worth being there with them for just the first few visits. We wouldn't be so harsh with a kid going to nursery, we would gently help them get used to it. This investment in settling them in with the concept of carers and smoothing over the first two or three visits could reap rewards as they then get comfortable with it and you can step back.

I think leave your current plans in place. If your DH can't face up to his mother then he will have to live with the worry - he has the solution (I know it's hard to turn off the guilt). Maybe in a few weeks MiL will be more agreeable to accepting help - start with window cleaner/gardener, build up to cleaner/help with bed-changing/ironing. An annual boiler service might lead to some other house maintenance. It's difficult for everyone but hold firm.

I would let DH deal with it tbh. He needs to be firmer but if he doesn't want to be, let him pick up the slack and do the running back and forth and helping out. I fully understand why you would be tempted not to visit for 6 months - nothing stopping your husband visiting. I think you need to stand firm - although I know it's easier said than done.

Your PIL need to be left so that they can assess for themselves their growing care needs.

Visit once per month, as planned, and voice opinions on the cleanliness of the bathroom, state of the garden etc. and that they are clearly needing to look at moving into care because they are not coping.

After some realistic awakenings they should see that carers who attend their home are a great solution.

My mother would literally rather die than to be a burden like this.

They can afford to get carers. It is their choice if they don't.

They are adults and have been given the options and chosen to turn them away. Unfortunately sometimes with quite elderly people they are like toddlers and push the boundaries and expect the world to revolve around them.

Stand firm and don't let these 8 hour round trips impact your mental health. It sounds like you visit a reasonable amount.

The UK has a very interesting mentality when it comes to this, especially towards daughters and daughter's in law.
There's a lot of shaming and guilting people for not laying their lives down and I find it bizarre.

Do what is best for you and your family and keep repeating that you are happy to get the carers back around of she agrees to let them actually help.

I sympathise - my father expected me to give up work and move in to look after him- not practical or financially viable!
Do you have POA?

At the risk of sounding cold-hearted, I would personally completely detach yourself from this. You're working and looking after your own household etc. Your husband is retired. He should be ashamed to be leaving YOU making all these arrangements, and suffering all of this worry and stress for HIS parents.

Leave everything to him, and save yourself the stress. Honestly, these men are useless and just see their wives as "carers" because they're women, and it's "women's work", in their view.

You've tried your best OP, now you need to handover completely to your husband.

Not all carers are the same. it might be they didn't like who came.

We had to try three different companies before we found the right one for DM.

Once you get the right fit, it's like magic.

Not callous at all , possibly the shock the PIls need to make them realise they need some help, otherwise where does the family draw the line? they cannot be expected drop everything the moment PIL call .
I had to take a similar approach with an elderly relative (who i loved ) she quickly changed her mind when i pointed out that it was her choice to cancel the help.
Apart from caring for her i had a demanding job, 3 kids ,a husband ,pets ,a life !!
It's really not fair on anyone when elderly people cancel carers without thinking about the effects on all those concerned.

Also offering moral support. I’m sitting on train to visit elderly parents. Sister lives two hours away, I live a three hour flight and train journey. Dad in hospital atm. Since a fall in February we have had carers first four times and now twice daily. I understand the dilemmas.

my question is how did you get the carers? We had a list of providers from social services - it was a very long list but we narrowed it down by looking for somewhere local. They also have a few patients in the area. We interviewed two and chose the one that sounded the most flexible. Parents were not enthusiastic, but they took part in the interview. We went into details about what they wanted the carers to do. We get frustrated when mum says her feet are hurting but then won’t ask the carers to do the washing up. She is getting used to them though - and now three months later is not questioning that we have not cancelled even though dad is back in hospital. Maybe if your Dad is involved in the interview he will be more accepting. The other thought is if he is being rude to carers, is that out of character? Is it evidence of total confusion over the changes that are taking place and not in his control? Is it cognitive decline?

Our solution is that sister and I are taking turns to visit for a week every month. I am semi retired so have more time - but I have responsibilities (back home) to my daughters, nephews and some part time work that is rewarding. I would not go over the week unless there is a clear reason. This month it is that mum cannot get to hospital on her own - so I will stay longer. My choice because Dad is very frail.

There is great regret that they did not move nearer to one of us when they were in their eighties, but they were active with a good set of friends around.

Keep your resolve, you cannot be help to anyone if you drive yourself into the ground.

@StopGo you said Had to go down the capacity route with help from social services. I had Power of Attorney and was able to use it.
I think I'm a bit dense but I don't really understand how poa,Health and\ Welfare ,gets a stubborn ,confused old person to co operate .
what was your experience ?

It depends on how much day-to-day care they need.

If they've sent away one carer, there's scope for trying other carers from the same care agency. The best agencies will bring a carer to the client to introduce the carer to them and decide what help they need.

Or maybe you will need to try another care agency.

If they need help and are refusing it, you may need to get social services involved.

If you live several hours away, it's not feasible for you to visit very frequently. Arranging care remotely is what you can do to care for them.

With this entitled attitude you will absolutely not have more "love and attention" in your 80s.
Adults should organize their own life and once they cannot cope accept offered help.
Demanding that your DIL moves and starts revolving her life about your bum and piss is utterly ridicilous.

This is Elderly Parents topic not AIBU.

Its supposed to be somewhere people can vent a bit as well as ask for help on the labyrinthine hell which is "health" and "social care" for the elderly, parents struggling to accept traumatic and permanent life change and being (usually) women doing the heavy lifting at the sandwich stage of life.

OP: this popped up in active which is probably the source of some of the simplistic and sillier replies.

I think the advice to try and start with a cleaner might be a good one, DH has to step up - you can't do this for him and neither of you can care for someone 4 hours away. A cleaner might help with the transition period of coming to terms with needing help instead of being independent or a giver of help. Does DH have PoA for health and finance for his father or is that with MiL?

If you have regular contacts in the area it can be worth looking for a local independent carer rather than an agency as this can give better continuity of care with more flexibility in services. That flexibility can help with acceptance.