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Desperate for advice please - Carers UK Forum

Desperate for advice please

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My parents lived at home 160 miles from myself and 130 miles from my sister. Recently we moved mum who is 88 and dad who is 87 to a really nice residential home 10 minuets from my home.

Over the last four months I traveled 7000 miles back and to taking my parents for appointments, visiting each other in hospital and sorting out crisis after crisis. My sister could not take the stress anymore and under her doctors instructions stepped back leaving me to deal with everything.

The last three years there health got worse and worse. Neither of them could cope with life and my sisters and my life was spent sorting problem after problem out for them.

Two years ago we activated power of attorney for finances unfortunately they do not have it for health. I took over all there financial dealings and had all the post sent to me. Dad was getting so upset as he could not cope with anything that came by post. By myself taking this pressure off him he was less stressed.

Mum was seeing a mental health nurse at home after years of depression. Every day for the past two years she will cry as life is too overwhelming for her. It is so sad to see.

Things came to a head in January 2018. From that point my sister and I have no life. Everything revolves around mum and dad, each time we went to visit intending to stay for a few days it always stretched out to three or more weeks as something needed sorting.

Both mum and dad had two hospital stays due to falls and collapses from March to August. Again we had to stay to take them to visit each other. We were shopping for them online and in the local shops, we arrange for cleaners to visit twice a month and a gardener to look after the garden. We had milk, bread and potatoes delivered to the house.

Dad has hart failour, due to poor circulation his leg is weeping.
Dad was phoning the district nurses every day demanding home visits. He would tamper with his bandage on his leg to get them to go, they even bandaged his good leg to passify him but this did not work.

He phoned his GP everyday demanding home visits. He was phoning the chemist most days asking for medication that he was hiding then forgetting where he put it. Dad was phoning me up to five times a day.

He would demand I visited forgetting I had only just got home, he would shout then hang up and then phone again. The phone became a thing of fear for me, everytime it rang I felt sick. If I went out there were left messages and most made little sense. On top of that most days I had calls from all the professionals mentioned above, and other issues from mum and dad to deal with, it was a nightmare.

My sister and myself were being told by social services and every professional that mum and dad needed to go into care. We tried to keep them at home so organised a care company to help out.

We put into place a company that would look after all the things mum could not cope with after asking what she needed help with. The company would give out meds, put out and bring in weekly bins, carry out washing and ironing prepare meals and some shopping.

None of this worked because mum and dad keapt complaining how they could not cope to me but at the same time would not let the carer's do anything.

Mum and dad for a long time had been taking either no medications or taking too much. When we cleared the house we filled and returned to the chemist 15 bags of out of date or hidden meds.

This was a real worry, when the carer's took over dad was hiding meds saying it was his property and mum was taking lorazepan over and over as neither of them could remember taking any medication.

I bought the carer's lockable boxes to keep there meds in and had to get the chemist to take new supplies and physically put tablets in these boxes as dad was hiding them before the carer's arrived.

My sister and myself tried to find mum and dad a home in there city, it was all arranged that they would go in for respite and hopefully stay. At the last moment they changed there minds.

In August dad collapsed and was taken in the early hours to hospital. During his three weeks stay he presented so many safeguarding issues to the staff that I was told he would be discharged into an EMI home permanently.

He had a nurse sitting with him twenty four hours a day, seven days a week because he was a risk to himself and other patients.

Mum had already asked if I could find a home for her and I said that if she did not change her mind again there was a nice one near to me. While dad was in hospital I had to return home as everything was so far behind in my life.

I asked mum to come with me as she was not safe on her own and would be unable to visit dad. I explained we could visit the home near me with a view to her and dad moving in together. I phoned the hospital and they were happy to discharge dad there when he was well enough. I also spoke to dad a few times over the next three weeks and explained the situation he was in. He said as long as mum and he could be together he would be happy to move.

Mum visited the home and loved it agreeing to move there with dad permanently. Three weeks latter they moved in and have been there now for two months. Everything was going well for them after the initial adjustment. I am able to visit and was just starting to catch up on my own life.

After this very long explanation I come to why I have posted on this forum.

Three weeks ago social services visited dad, I was knocked for six when I was told based on dad being able to say he was in a home being looked after by nurses, that in her opinion dad has capacity and wants to live back in his home town. I said as both my parents had lived there for all of there lives then it's natural they would say that.

I was told I should not have moved them and should not have sold there house. My sister and myself have power of attorney for finance and property, we have taken legal advice and have been reassured that we have acted within the law.

The house was sold to pay for there home fees as you can imagine paying for two is extremely expensive. As far as my sister and myself were concerned they were now living in the residential home, there was no point leaving there old home empty with winter on its way. If the house had any burst pipes or vandalism it would not be covered by insurance.

Neither mum or dad have been diagnosed with dementia or to my knowledge even been assessed by there GP. I was told in March by dad's doctor that he had dementia but it turns out know that she did not record this. Mum most definitely has early onset as her short term memory is zero and she as no capacity regarding her needs or safety. Dad has all the classic symptoms and has not got capacity regarding his needs or safety.

Dad has always mentally bulied mum, that is why she has terrible depression. Dad has always deflected anything he does not want to do onto mum saying it's her that does not like something.

He is telling me and mum is telling me that they are very happy in there new care home and want to stay here. But social services are telling me they want to go to a residential home back in there home area. It's all very distressing and confusing , I believe dad as always is telling mum what to say, with her poor memory she is getting very upset not understanding what is happening. The staff at the care home have recorded mum stating that she wants to stay where she is.

More worryingly they are telling social services that they are missing there friend's and don't get any visits. I am visiting every week mostly twice but they don't remember, my sister comes up every four weeks to stay with me and visit.

I can't seem to get social services to understand that dad has always been a loaner and has no friends. Mums friends obviously are the same age with the same medical problems.

One has just moved into a home another is going too soon as the family are looking for a suitable home. Mum only has two friends now who are house bound and will not be visiting. Also how long might they live due to there age.

On ballance surley it's clear mum and dad are in the best place near to family. Can I stop social services moving them?

If they make a decision to move mum and dad can I tell them as I strongly disagree with there poor decision that they will have to take full responsibility and have to arrange everything.

When I say I am suicidal I mean I am actually at such a low point I can see no way out of this nightmare.

I have no strength left to organise the move and set up anything that needs dealing with other than looking after there finance's. We have already tried everything and none of it has worked. I know when mum and dad realise no one is going to visit them including my sister and myself they will be so upset.

Any advice would be a great help.
Oh Ron, what a mess. It's a wonder you have coped as long as you have. This is way beyond anything my family has dealt with, but I am sure when forum members wake up there will be people who can start to suggest ways forward. For the moment, well done on getting the legal advice about the house. There will be help here soon.

Welcome to the forum. I too have had many battles having had four disabled parents/in laws, all now passed away.

Don't ever believe a social worker. Ask them to communicate via email in future, so you have evidence. Put your phone on answerphone, and take control of your life once more.

How old are your parents? Has the house sale gone through?

You have done all the RIGHT things, but reached what I call Clapped Out Carer stage, you have done so much for so long that there is nothing left for anyone.

You need a SPECIALIST solicitor to deal with this now, and then tell SSD that the solicitor is dealing with everything from now on.

Go and see your GP, explain the situation, and ask the GP to write and say that you are so exhausted you can't do anything more to help.

Most crucially, you said that in hospital dad had a permanent "guard". Did the hospital do an NHS Continuing Healthcare Checklist?

Next, check that the social worker is qualified. Go to the HCPC website and check.

Ask the GP to make arrangements for dad to go to the Memory Clinic for a formal dementia assessment.

Of course mum and dad want to go "home" but the sad reality is that the "home" they are thinking about probably doesn't really exist any more, their friends will either have died, or become frail themselves.
Hi and thank you for taking the time to reply.

I am retired with limited savings I can't afford to seek advice from a SPECIALIST solicitor.

I have had a NHS Continuing Healthcare Checklist Carried out three weeks ago where mum and dad are now. I wish I had not done so as it was because of this social services got involved and dad did not qualify, what a supprise!

I have already made arrangements for dad to go to the Memory Clinic for a formal dementia assessment through the GP and waiting for an appointment. At least you have reassured me that I am going about this the correct way.

Much appreciated,
Hi Ron,

This is dreadful.

If your parents are incapable of looking after themselves the Continuing Healthcare should be granted. You say there was an assessment done three weeks ago - who said he does not qualify? If there has been a decision made jointly with social services and NHS and your input, then you should appeal. Easily said, I know.
I can understand it's a problem with social services involved, but I don't think you can go on as you are without social services being involved.
Just two minor points. I really feel for you and understand everything you say about your parents needing to be near you. No doubt social services in your area would do a lot to get your parents removed elsewhere just to protect their own finances.
CHC / NHS Continuing Healthcare ?

Main thread with the full sp on both :

https://www.carersuk.org/forum/support- ... inks-32532
Hi Ron
I am wondering if the main reason behind all this is that Social Services are worried they will have to pick up all the funding once all the money from the house has been spent on care home fees. If you had gone through the financial assessment route with social services they would probably have put a charge on the property to reclaim their money once your parents ahd both passed away, and in the meanwhile would have placed your parents in a lower priced care home.

Another reason may be just that the social worker has been on a training course on capacity and it is such a hard thing to prove or disprove. My dad had Vasc dem so his memory and to a certain extent his basic wants were never in doubt, that is until the last few weeks when "wanting to go home" referred to a childhood home of over 70 years ago.

What exactly have the Social workers asked for in veiled threats? How do they think he can home if it has been sold? Is he near using up all the funds from the house? Are they shouting safe guarding concerns? Are they hinting or acusing you of doing something wrong? When you are at "clapped out carer" stage any flippant remark from SS can play havoc with your head.
Ron, I was not suggesting that you spend your own money.

As you have POA for finance, and your parents have money, then it is THEIR money not your own, which you should be using. Make sure you keep a list of all your expenditure and reclaim it at the end of every month. Presumably you have a debit card for their bank accounts?

I expect Social Services became involved because DOLS (Deprivation of Liberty) are currently "flavour of the month". (Google for info). The rules are soon changing again!

It is normal that CHC applications are first refused I'm afraid. Were you involved in the assessment and given a piece of paper with their scores afterwards? If not, ask for it to be done again, properly this time. Have a look at "Care to be Different" and also the Grogan case for CHC, which involves someone with dementia.
It's extraordinary, isn't it? Here are your parents, FINALLY safely settled and happy in a care home near you (as happy as either can be)(your dad sounds a really horrible tyrant - your poor mum!) (and poor you and your sister as bullies don't usually have just one victim).....and now interfering SS want to muck them about again!

Honestly, it's insane!

As others are surmising, the only POSSIBLE reason that SS are sticking their noses in is because they fear they will have to pay for the residential care once the self-funding money runs out.

AND, another thing - YOUR local SS (ie, where your parent's residential care home is) basically want to ship your parents back to their 'place of origin' (where they used to live) so that WHEN they run out of self-funding money, they will have to be paid for by THAT local council!!! I'll bet that's what this nonsense is about!

Can you run the numbers to work out exactly how long the money from the house sale will last your parents in self-funding? That at least gives you a timeline.

It's completely daft SS getting antsy about this - your parents will be self-funding wherever they live in a residential home!

And when they run out, the council (whichever it is) can insist they move to a cheaper care home anyway!

By the way, one 'ally' that you will have on your side is the manager of the care home they are in now! To him/her, your parents are 'valuable customers' - TWO residents both self-funding! Talk to the manager, get them 'on side' as the manager will definitely want your parents to stay (that is, alas, unless your horrible father is making life a misery for them and all the other residents as well as his poor wife). Care home managers 'know the system' and know how to 'play it' - they know what to say to SS and how to deal with them, etc etc.

To be honest, I think, if this cannot be resolved and the stupid SS simplyu backs off and leaves your parents alone (as thye damn well should!) that you and your sister should simply 'wash your hands' of your parents affairs completely. Resign your PoAs and let SS do whatever they want. Just 'walk away'.

Neither you nor your sister have ANY legal 'duty of care' for your parents, and SS know that.

To be honest, the only person I have any sympathy for here is your poor mum - not your dad.

But really, as if SS hven't got anything better to do than mess arouind with people who don't need their help and didn't ask for it! There are SO many people desperately waiting for SS to pull their fingers out and get things done - and your parents are NOT!

No wonder everyone hates social workers - they're not there when they're needed, and they stick their noses in where they are NOT needed!!!!!!
Also make sure mum and dad are claiming Attendance Allowance and the "Funded Nursing Care Allowance". The manager of the home will know if they are already being paid this, in Hampshire this is paid automatically to nursing homes, but that may not be the case where you live.

Has the "boundary" issue raised by Jenny been mentioned by the SW?