Stress of being a distant carer

Hello, I’m new to the forum. My dad has Alzheimer’s, diagnosed in 2014, he is 84, turning 85 soon. My step mother abandoned him last year (March 2021) after 50 years together and suddenly my two siblings and I became carers. We have applied LPAs for both Finance and Health (waiting as it takes a while) and sorted out care assessment and had a local carer who did an excellent job until he left the country last July. My dad lives in North London, my sister in Hertfordshire, my brother in Putney and I live in West London. We all work so it is not easy to provide additional care for dad. He recently had a review by the adult social services and they increased the hours allocated to carers, unfortunately this change is a nightmare situation, my dad is very strong minded, refuses to let the new carers look after him or give him his medicine. He lives in a sheltered accommodation and scheme manager is sometimes able to intervene when she is around but she is not always there. I contacted the GP who referred him to his Psychiatrists and we are waiting for an appointment for over a month now and GP cannot recommend/change his medicine, the specialist should do this. In the meantime, my dad is losing weight as he is not eating much, not taking his dementia and heart medicine and difficult with “strangers”. I was with him on Monday and took his blood pressure reading and reported it to the GP who was happy with the readings; considering he stopped taking his heart medicine. He is fine with us but we cannot be there with him during the week to give him his meds in the mornings and evenings. The carers keep calling me whilst at work to talk to Dad, my dad refuses to talk to me in that environment and doesn’t even recognise who I am on the phone so I tell the carers to leave as I don’t want him agitated especially when he is not taking his heart medicine. I’m at lost what to do… We (all 3 children) have no space to move our dad to live with us and there would be a difficulty there for my sister and I as dad sometimes thinks we are his wife and has fits of jealousy with our husbands so that won’t work! What else can we do for him to accept the help from the carers??? Anyone has tips? We have taken photographs of the two main carers so that he would recognise them but he is adamant! Any suggestions will be appreciated .

Hello Beatrice and welcome to the forum
I’m sad to read you are in this difficult and heartbreaking situation. My late husband had vascular dementia and other health issues including strokes. He was in a nursing home.
Could you tell us a little about your dad’s finances? Others will be along to explain how the finances work.
I feel your dad may settle in a care/ nursing home after a while. He would be cared for 24/7 you and your siblings could visit and check on his well being. I know it’s difficult to think of placing loved one into a home but needs take over wants sadly.
Maybe tell him he is going for a little break. I understand he may forget what’s been said but repeating at the appropriate time is the only answer.
My heart goes out to you.

I’m afraid the time has come to consider residential care. Dad is clearly going down hill fast.
You need to write to the Carers Manager and tell them to STOP calling you at work, immediately. If the carers are having problems they need to talk to their manager. Turn your answer phone on.

I don’t have first hand experience but I know of a couple of friends who had a loved one taken into a residential home due to their aggressive and violent behaviours with alzhiemers/dementia, both were taken in on a crisis/emergency situation. Both had a slow build up/decline and then sudden change to aggression and violence and had to be taken into a home.

It seems your father needs an assessment and it could be more a case of when and not if.
The when being when you decide on which home/where and when there is a room for him.

They are being paid to care for and manage your father but is it just for normal care needs or for dementia care?
Double check the care company to see if that is something they provide before raising issues with them and the residential arrangement he has, I have heard that some places have the proviso that they are there as long as they can manage and if they need to be managed they leave.

BEWARE if alzhiemers care is not something they provide they could end the contract for the safety of their staff.

They or their manager or the residency manager could call the soc svs to have him placed in a care home if it gets bad and I am not sure how effective a POA/LPA will be in such a case, the authorities might have the trump card but you would have the say on which home he went to if you have the health and welfare one and you might be able to have him moved to a home nearer to you/one of you.

There might be a few complications in your situation.

You say step mum abandoned him last year.
Are they now separated or divorced?
Was it because his behaviour was declining?
You need to establish her legal status as it may be she wants to be involved in some way.
If dad has a solicitor then get him/her involved asap, to be funded ultimately by dad.

When dad signed the Power of Attorney, was dad of “sound mind”? If not, I’m afraid it may not be valid in any case.

It is now absolutely vital that you and your siblings have a “family conference” and decide what you want, long term.
Especially find out about EMI (Elderly Mentally Infirm) homes, somewhere between you and your siblings.
Details should be found on the CQC (Care Quality Commission) website.

Does dad have any friends where he lives?
Does he own or rent where he lives?
Does he have over £23,000 in savings? (The rough cut off for Social Services support).
Is he claiming Attendance Allowance?
Is he claiming exemption from Council tax due to Severe Mental Impairment?

If you do not know much about his financial situation, then it’s absolutely vital you find out as soon as possible.
I always suggest having a large ring binder and putting all important documents, bank statements, etc. in one place.

I live in the New Forest, so have absolutely no idea how things work in London.

I know that’s a lot of questions, they are things for you and your siblings to consider, you don’t have to share anything here unless you are happy to do so.

Feel free to ask anything. Sadly my mum, mum in law and sister in law ended up in residential care at the end of their lives.
No one wants residential care, but sometimes it’s the only way they can get the care they NEED.

Thank you. Sorry for taking a day to reply I’m not that technically minded and was figuring out how to reply. His finances are under £10,000, he hasn’t got much savings. Yes, it is a very tough decision for us.

Thank you for all the tips. Will take them into consideration.

Thank you. My step mother will not interfere, we have tried to reach out to her and she doesn’t want to be involved in any shape or form. I didn’t know about the EMI homes. I will research it. My dad’s mental state was much better when the LPA was signed, even the social workers recognised it. Dad doesn’t like to socialise with others, he like his privacy and majority of his friends have passed away. His savings is under £10k. He has attendance allowance and pension credit and I’m not sure about the tax cut; as I didn’t know about that either. Yes we have a ring binder with all his documents and keeping records up to date

Don’t take it for granted that she doesn’t want to know.
She might have a change of heart with thinking about divorce or the will.
Hence Bowlingbuns excellent advice above.

Have you had a look in other forums as well eg dementia and alzhiemers? You might find some useful information in those as well.

Your fathers liking of privacy will be an issue and I don’t have any answers, the residential homes might do and/or Soc Svs in getting him to go to one.

If dad rents his home and has under £10,000 in savings, then Social Services are responsible for his care fees and which home he goes to, so talk to your siblings about the area you would like him to be for ease of visiting, and talk to Social Services as soon as possible.

Heya. Talk to the local council social services team. See if you can arrange for a licensed qualified social worker to conduct a entire care needs assessment pronto. Discuss goals and everything else. Interview a few different local recommended but fairly reputable care agencies too. Good luck. Make some different brief summary notes.

These things are already done/in place as stated in original post.

If your father owns his own home, then his wife if they are not divorced, is probably entitled to half if it has to be sold to fund his care? I think then that she has to become involved. I do agree with the other posters that it looks as if you really do need to think about residential care. If your father does ‘lash out’ then the Care Company may well terminate the contract for the staff;s safety?

I do realise how hard this is as you and your siblings obviously care for your father but it is his safety that really matters now. It really does sound as if it is the time to start looking at residential homes but I am not sure who is responsible if your father owns his own home, even if there is a ‘lean’ on it from your stepmother?

To follow on from Helena’s comments, regardless of how much money someone has Social Services has a duty to make sure a vulnerable adult is safe, and pay for that care if relatives cannot or will not pay. SSD can then go to court!

Thank you this is a really tough decision to think of resi-care… but I appreciate every comments provided

No one wants residential care but it is often the only way someone’s needs can be met. My mum, mum in law and sister in law all ended up in residential care, after all else failed.

Think of it as giving your dad the care that he needs, doing the best for him.
Yes there are a lot of emotions attached to it but you have to be pragmatic and do what is the best for him or leave it until the care company cancels the contract and then what?
Not a great prospect but it is looking after him.
What would you advise your best friend to do in your position?

What you want to avoid at all costs is having to make a decision in a crisis, or even worse that decision being made for you by health or social services.

One of my family struggled to care for his wife, who had dementia. I urged him to consider one of the two nearby homes that could have happily cared for her, one just a few hundred yards away from him. He ignored my advice, but was in tears more than once, telling me what a struggle it was.

One day she fell, and was in hospital for a long time.
As Christmas approached, I spoke to staff who said they most definitely would not be discharging her before Christmas.
(I dreaded Christmas, my own mum was housebound and disabled and my son with severe learning difficulties would be home for nearly 2 weeks.)
Then the weather became icy, people fell and broke limbs. My relative had a phone call “your wife is coming home to you this afternoon”! We managed to get that put back until the next morning, to give us time to move a bed downstairs. No consultation, no care plan, nothing. After one terrible night, she needed residential care, immediately.

The only bed was 18 miles away. Her husband didn’t drive any more, so we had to drive him back and forth (too mean to get a taxi).

Don’t let this happen to you,
I know residential is difficult, but you can’t bury your head in the sand. He is going to need more and more help until he dies. You cannot stop this, but have to accept it, and plan for it. It will be so much better if YOU and the family find the best home in the best place so you can all visit.
Otherwise he may be miles away in a home you don’t like.

Think of your role as like his parent now.

One of the hardest things to do is to make a life-changing decision, and most of us put those off “until we have to”. Trouble is, choices are usually more limited then. My wife and I took the decision to get our disabled son moved to independent living before a crisis struck and left us unable to choose. Luckily we did: a few years down the line my wife suffered a spinal cord injury that left her using a wheelchair. If we’d left the decision until that point, our choices would have been far more limited and our son would not have the life he does.

With my Mum, we knew the time was coming soon but she still had the capacity to say “no.” Then she had a long spell in hospital during which time the dementia took away her mental capacity to choose and we had to find a home that met her needs and didn’t have any covid cases at the time. It is about 4 miles away, so as long as I’m ok to drive and can afford the petrol we’re fine, but there are two homes in stone throwing distance from our house that might have met her needs if we’d been in a position to choose.

Thank you. I hear you.