Overwhelmed!

[TheRemainsOfTheDayCream]

I'm trying to help my 82-year-old aunt who is alcohol dependent and has dementia. She is also recovering from cancer. She was living with a friend who supported her but the friend fell ill and was moved into a home a couple of months ago.

I visited my aunt six or seven weeks ago and found her in a terrible state: living alone, confused, surrounded by mess and wine bottles. Think hoarder's house. Every surface in the kitchen was covered with stuff. When I opened the fridge, flies flew out. It was full of out-of-date and mouldy food.

It was obvious that my aunt's 'mild cognitive decline' had significantly worsened. She showed signs of severe short-term memory loss and was unable to manage her environment or her self care. She'd stopped leaving the house and had no fresh food in.

I immediately contacted her GP and submitted an online form to social services flagging my aunt as a vulnerable person. I had two phone calls from social care - one to acknowledge my concerns and one to suggest I order meals on wheels for her. Then - nothing.

Her condition continued to deteriorate. The meals piled up in foil trays, uneaten. Social care didn't respond to calls or emails. Eventually, the nurse at the surgery called an ambulance. My aunt was taken to hospital where she was treated for a chest infection and malnourishment, as well as alcohol dependence.

She arrived back on Friday. I live 90 miles away, but I came down to welcome her home and settle her in. The discharge team had arranged a care package covering three carer visits a day. Unfortunately, my aunt was scared of the carers and needed a lot of reassurance from me.

I had to go away over the weekend, but believed she would be looked after by the carers. I couldn't contact her because she can no longer use the phone (I tried ringing). When I arrived back yesterday, I discovered that she hadn't had a single meal or Fortisip (she's meant to have three a day). I'd left her with biscuits too - all untouched.

At this point, I have lost all faith in the care system. I feel overwhelmed. I live a long way away and have work and a family to manage (two children with special needs so at least I'm somewhat experienced at dealing with stuff like this). I have already had arguments with the hospital discharge team explaining that no, I can't do my aunt's shopping because I don't live here. The assumption seems to be that family will manage, but my aunt doesn't have any family nearby.

I'm wide awake, worrying about next steps: complain to the care agency; chase social care for a care assessment; organise power of attorney; chase the memory clinic; ring the GP surgery about a blood test they're requesting re cancer checkup.

My aunt has to move out at some point because the house is not hers and will be sold. She wants to go into a residential home, but has no funding. I'm worried that social care will argue she can cope independently or with carers.

Any advice or wise words would be so appreciated.

It maybe too late for POA - in your aunts situation it might be better to leave this as she has to have capacity to sign it, it’s sounds like in many areas she doesn not.
Maybe you need a clear repeating message? Eg I cannot care for my EA. I live too far away. She has no close family. And repeat.
Join onto the thread about elderly relatives - cockroach cafe I think it’s called. Lots of good advice. Also age concern for your aunts areas maybe helpful.
I have had a similar experience with social care - it has been months since my parents were on the list to be seen by a social worker.

Personal experience:

the alcohol dependency really reduces appetite.

my mum was in a similar situation and only cut down her drinking because the dentist told her she might lose her few remaining teeth. While she was drinking heavily she had basically no appetite.

if your aunt is scared of carers it’s possible she is refusing to let them in. If she does this a lot then the care agency will keep trying for a bit but ultimately they won’t keep going if she refuses to let them in week after week

memory clinic was pointless.

Thank you for your reply @Ritaskitchen. I realise it may already be too late for poa, sadly.

I'll have a look at the Cockroach Cafe and Age Concern.

I'm sorry to hear that you have had similar issues with social care. I'm shocked at how bad things are with them. I dread to think what would have happened to my aunt if I'd left her to social services.

Thanks @Octavia64. Sorry, I missed your post. Was trying to get back to sleep, but I've given up.

My aunt's stay in hospital means she's been off alcohol for three weeks now, but perhaps she's still suffering the long-term impact on her appetite. She's only picked at the meals I've made for her.

I'm not sure ifshe can lock the carers out, but I'll check when I go round this afternoon. She won't eat or be able to take her pills safely without carers.

I worry that her refusing care will have a negative impact on her care assessment.

God - nothing is straightforward.

I'm so sorry @TheRemainsOfTheDayCream that I can't be of any more help to you, than to say that you must stick to your guns, and just keep on telling them that you live nearly 100 miles away, so no, you definitely can't do her shopping for her, or anything else practical - or financial if that is brought up. If they then say to you, well could you do her shopping once a fortnight, or even monthly, the answer is still no. Don't try to be helpful in any way, just keep on saying to them that it cannot, and so will not, happen.

It is almost 20 years ago when I last had dealings with adult social services, firstly about my very dear, but now sadly long departed, Mum, and almost 18 years ago since we had to be in similar contact with them about my Dad. However, the thing I find most depressing, is that my Mum had to be very disciplined with a similar department in the late 1960s, early 1970's, in connection with her elderly parents, and it nearly broke her heart having to keep on saying no to whatever departments they came under the flag of in those days. That there appears to be little, to no improvements, in the care of elderly adult care in the last 60 years is both disgusting and soul destroying.

In fact, in reality, and despite all the developments in communications, in technology, and in what is now a massive improvement in what is considered acceptable behaviour these days. I truly believe that things like our social services, the NHS, and the ability of our police forces to do any safeguarding of our citizens, or the protecting of our often damaged properties, have gone massively, and exponentially, downhill...

Hopefully, someone will be along soon to give you much more up-to-date, and useful, information. 💐

It sounds like she needs an advocate to get the care she needs? What county is she in?

Yeah it was probably a couple of months before my mum was really eating again (although she still has a small appetite) but at least she does eat solid food now rather than tea and wine!

@TheRemainsOfTheDayCream, sorry, I meant to add that you should send the ASS a hand written, witnessed by an unenvolved third party, and copied, letter, that states unequivocally that although you care about your Aunt very much, you are not, and never have been, legally responsible for your Aunts safety and well being.

You should add that your letter is to be taken as your notice that the Adult Social Services - so themselves - are totally responsible for the safeguarding, and welfare of your Aunt. If you could have such a statement written and endorsed by a fully qualified solicitor, that would be both the preferable, and wisest, outcome. Good luck OP xx

@PlayingDevilsAdvocateisinteresting - it's so depressing to hear that things have been this way for so long - and are possibly worse. I do keep wondering what on earth would have happened to my aunt after I reported her situation to social services if I hadn't continued to push for help. I'm not convinced they would have acted in time to help her.

I'm sorry you went through this with your mum and dad.

@AmITotallyBonkers- she's in Essex. That sounds like a good idea.

@AmITotallyBonkers - I've found an advocacy service in Essex - VoiceAbility - and will contact them. Brilliant idea - thank you!

Good luck with voiceability.

P of A is not applicable now and you really do not want the heavy weight of that legal responsibility of that on your shoulders.

Have firm and consistently applied boundaries re your aunt also along with making it clear to others what you can and cannot do. You've already done the latter so that is good.

The only person however, who can help your aunt now is her own self. You can and did reassure her re the carers but it is down to her to let them in. You can only do so much from a distance and you have a family of your own. She cannot and should not rely on you alone and she has not been eating anything you have yourself prepared.

Do not set yourself on fire to keep your aunt warm. Carer burnout is a real problem and you have more than enough to deal with as it is. How is it you got involved with her to this level now?. I presume your aunt has no family of her own (or you are the last one left) so you've felt somehow you had to step in to help. Help can end up as enabling her which neither helps you or your aunt. Ultimately you're going to have to step away for your own sake.

Hello @AttilaTheMeerkat

In answer to your question about how I am so involved: I am my aunt's only surviving close relative aside from her older sister - my Mum - who has her own health issues. I'm determined to protect my Mum from this situation. My aunt had a son, but he died many years ago.

My aunt's dementia is so bad now that she is incapable of helping herself. I have many years of experience dealing with navigating systems for my sons, so I am equipped to manage the admin side and don't mind doing that. But I have made it very clear to social services that I live a long way away and can't manage my aunt's shopping, pick up her meds, manage the house, etc. Their assumption always seems to be that there is a family member available to do these things - well, there isn't.

I spoke to the carer manager earlier: my aunt has been refusing to let the carers in. I hope I can use this as evidence that the plan isnt working. I wish she could be moved to respite care instead.

https://www.ageuk.org.uk/essex/our-services/ Hopefully something here to help!

I can't believe what's happened.

I reported my aunt's situation to social care on Monday morning - said she was refusing to engage with the carers and as a result she went without food and meds for 48 hours.

I was with her when the phone rang on Tuesday morning. It was the social worker. After a brief conversation, she said she thought my aunt should go into a short-term placement in residential care with a view to making it permanent.

She visited an hour later, spoke with my aunt then said she hoped to get her into a home by the weekend. My aunt was very pleased with this and said she'd feel safe in a home.

I had to travel back to my own home after that and was hoping to leave the move to my mum, but had a call later to say she'd had a bad fall and is very shaken and bruised. So I think I'll be going back up on Friday.

I'm astonished and grateful that the social worker made the decision so quickly. I've been so worried about the upcoming battle to move my aunt to a residential home, especially after hearing so many negative stories. I think the fact that she ended up in hospital with malnourishment recently and shows clear signs of confusion must be a significant factor.

Oh that is good news! Hopefully the transition will go smoothly for your aunt and she will settle quickly. It will be such a weight off your mind to know she's being looked after 💐

Thank you @whippersnapper55. It already feels as if a weight has lifted.