So tired and fed up

[BeaTwix]

I have many threads. Sorry.

Background. I support an elderly person "the oldie". They are a Relative not parent. Always been chaotic and disorganised. Hoarder so house is full and poorly maintained as you can't get tradesmen in due to lack of access. Last decorated in 1978. Only repairs since then were emergencies and there were some crackingly bad decisions made e.g major water leak necessitating pipe replacement. Pipe found to be lead but they left the lead piping inside the house in situ as it would be "too disruptive". The oldie is now dementing we await cognitive assessment (2 year waiting list which we have only just gone on as the GP is problematic and doesn't listen to my concerns - annoying as I'm also a doctor and has mansplained me several times on my professional area of expertise). Finances a mess too due to lifelong lack of organisational ability. There is no one else left except me and my siblings.

I live 400 miles away.

I visit every 6 weeks.

I firefight the house. I've organised the most pressing repairs - next is window replacement as the existing ones are badly corroded, draughty and insecure so even if a nursing home beckons they need done so the house will be secure when unloved in while we get it ready for sale.

I've taken so much stuff to the charity shop/ tip. Usually an estate car load after every weekend visit.

I am slowly working through the bank accounts - registering PoA, moving correspondence to my house, consolidating stuff so we don't have 27 institutions involved. Opening ISAs and other tax free accounts.

I've fended off a carer who was taking advantage financially. I've put measures in place so similar issues will hopefully be apparent in the future.

I've got a reliable cleaner in to do basics, support groceries and laundry. There are other carers that do food prep.

The kicker today is that no matter how much I do more arises and the bloody elderly person seems to sabotage me at every turn.

Every time they go out they seem to buy another bag of stuff at the charity shop. They open new bank accounts despite not really having capacity to do so They agree to do simple things like get the cleaner to photograph and email me financial letters that have arrived there by accident but then they forget. So post them. But because they are confused post them to the address I lived at over 9 years ago.

I'm totally and utterly worn out. I get so cross with the elderly person for making my life harder. And I'm really angry with them that they are in this state in the first place - if they had actually made some decisions/ taken action this would all be much easier. In contrast my Father and Grandfather prepped their houses for old age. Redecorated in their 60s. Chose finishes that would wear well and be practical eg. hard wood flooring. My parents even did swedish death cleansing before it had a name and reduced the amount of stuff they kept to make it easier for us when the time came to clear the house.

In contrast the oldie just keeps adding more and more stuff to the house and asking for more and more house maintenance to be done - the latest was that they quite fancy getting the front gate painted.

I'm afraid I gave that short shrift. They could have painted it any time in the last 46 years. just because I'm organising stuff doesn't mean I need another fucking job.

I don't want to be cross with them. But I'm just fed up and feel so unappreciated.

My siblings help but the financial stuff in particular falls to me.

You sound amazing. However you have no obligation to do this. I would back off. Make visits less often and try to tie up as much money as you can so they do t spend it. It sounds like they will be in a care home before long and will be expected to find the money. You may not agree with their decisions but you can't control everything. Try to stop reacting. Don't answer the phone just ring back. Don't open their post every day either. Give yourself some time off. No chance of getting adult services? They can help with hoarding. How about a support worker? They can help with a lot of the things you mention. Remember you cannot change other people but you can change how you react to them. Your father and GF sound amazing btw!

What you are doing is amazing.

Let them know they can add things to the list but you will be working on the list in order of what keeps them safe, and safe in the future (like POAs, money simplification) as you only have limited time.

Their money is theirs of course so if they want to spend on charity goods....well, so be it. They may not need it but at least the cash in going to good causes!

I wouldn’t care much about the lead pipes - many of us still have those.
You have to limit what you’re doing; you have too far to travel, they need to pay for support including maintenance tasks.

You’re doing such a lot already. The extra jobs and garden gate incident reads to me that your elderly thinks that they now have a PA to do everything in their life, which really needs knocking on the head pronto.

I get why you’re doing tidying up and dump runs now because it helps in the long run to nibble away at these jobs when you can rather than try and do it in one massive effort. I also totally understand trying to manage another household from a distance when the occupant seems hell bent on making your life harder. I can only say what I’d say to myself if I could go back in time, and that is - stop. What is it that must be done for your elderly to satisfy minimum standards of safety and welfare. Once you have identified that, then work out who will do that (it doesn’t have to be you unless it really is a PoA job).

everything else is a nice to do job that can wait. Eg again I totally get why you’d want to tackle the windows now, but if it waits until your elderly does vacate the house would it be a disaster?

I struggled for a long time because my mum had such high standards and I wanted her to have the best. It’s unsustainable though, and when I realised she didn’t care any more if the carpet was covered in broken biscuit, I thought - well why should I care then? She had a cleaner and stuff like that had to wait until their next visit.

now I’m in the position of clearing the house and have a list of essential maintenance that will need doing before the house goes on the market. I don’t think it would have made any difference if it had been done when she was still in residence, and in fact will be easier because the house will be emptied.

@kiwiane I'm not touching the lead pipes.

I was just using it as an example of the madness that has gone before.

And there is lots of it.

A private pension unclaimed. Supplying power to all the garages in the neighbourhood and never taking money etc. etc.

But yes. Minimum standards is a good mantra.

Well it doesn’t sound like this person is one of your parents/grandparents so you do know you can walk away without any moral obligation?
Okay I know that sounds harsh but I would be investigating a care home for them and if they refuse leave them to it.
You do know you don’t have to give up your life for someone else don’t you?

That’s a lot OP, goodness.

When my 85 year old mother declined (though to be fair she has always been lazy and did nothing to prepare or sort anything) I spent 1 to 2 years doing or organising several bigger jobs in her flat, as well as minor ones.

After 18 months I was exhausted and now I do the basic minimum and that is my rule. Admittedly, the major jobs are completed. However I don’t bother myself over her mess or refusal to organise stuff. I simply leave it, working on the principle that if it becomes dangerous then she will most likely need to move into a care home of some kind. I live 3 hours away and literally can’t do anymore.

However, though my mother has some cognitive decline she hasn’t got Alzheimer’s yet at least. So she is not opening random bank accounts without my knowledge. I don’t know how you would deal with that, tbh.

You are truly wonderful, and kind, to organise all this. You can only do your best.

Definitely don't do unnecessary jobs like the gate.

You could have a holding phrase such as "yes, I'll be looking into that soon" to keep them happy.

You don't need to get round to it ever, just as they didn't.

Why are you doing all this? I think you are going completely OTT here.

how much care does the oldie actually need? They have carers so presumably they are fed, watered, take any medication in time, etc. Do they get help to shower, dress, toilet etc? They have food in the fridge and basic cleaning done. Surely the basics are covered.

many, many people live in cluttered, dirty, falling apart houses. Many people make unwise financial choices. Why are you killing yourself to deal with that? Are any of these things that you are so frantically trying to address actually harming your oldie?

You don’t have to do this. It’s their house and money. Let them spend it as they wish. Step back and let carers take over. You need to think of your own health too.

Just stop. Tell the GP and Social services that you're not coming back any more. You're never going to get this sorted.

@BeaTwix if you wish to continue to act as attorney under the LPA(s) that appoint you, you are not personally obliged to undertake all the legwork yourself and there will be local agencies that specialise in supporting hoarders to deal with the accumulated items (essentially decluttering if necessary then holding back the tide of new stuff.) You are empowered to use the donor's funds to pay for the professional support they need (ie things you are unable or unwilling to do personally.)

Local adult & community services will be able to give you details of the contractors they use.

If you have had enough, and want to cease acting as attorney, you can file a LPA005 disclaimer with the Office of the Public Guardian (forms online.)

If Relative lacks the mental capacity to make decisions about financial matters and about appointing a new attorney to replace you, a Deputy can be appointed by the Court of Protection. (Hoarding disorder can cause someone to lack capacity but it's a question of individual assessment not diagnosis.)

If stepping down as attorney you can refer Relative to social services and ask the Local Authority to apply for deputyship (only covers finances as the court rarely grants a welfare deputy order these days.)

Alternatively, and probably more swift in terms of a handover, is to Google the OPG Panel Deputy (or deputies) for the area where Relative lives and contact them to see if they would agree to apply to be appointed as Deputy upon you stepping down. If Relative has income/assets that mean they can pay for a professional deputy this could be a viable option.

Do not keep setting yourself on fire to keep
someone else warm. Drop the rope now before carer burnout really sets in.

Why do you feel so obliged to this relative when in any event you can only visit every 6 weeks?. Put your own self and family first now.

As you have PoA, register it with the credit agencies and get a marker put on cared for's file that they lack capacity to open new accounts.

It can be very frustrating caring for an elderly relative. I find weekly meditation helpful.

Agree with @unsync- you won't need to keep chasing bank accounts.

Also - do you have access to the older relative's address book and could you strike out your old address and write your new one in?

Is there any way you could get this person registered with a new GP since the current one seems to be extremely unprofessional?

I agree with all the posts suggesting various social services and agencies - however, I'd hazard a guess that most are overstretched. Additionally, it might be confusing and upsetting for this older person to end up dealing with a lot of different people. I think you might end up becoming the contact person and putting out a lot of fires over the phone - for instance, if the person wants to end the services because of confusion or nose out of joint, doesn't believe they need help with the hoard, doesn't approve of the pink hair of a carer, etc.

If the relative is continent, able and willing to bathe, is mobile, and can dress daily, what is the likelihood of needing a place in a care home?
I understand that the hoard is probably extremely hard to cope with on a personal level for you, but as long as you continue to chip away at it and make needed improvements to the house, you are basically putting off the day when social services will judge this person unable to function alone or judge the house to be a health hazard. Making the house liveable might backfire on you.

I'd continue to deal assiduously with the finances, continue to make your visits, but stop working on the hoard, and only deal with actual health hazards in the house. I'd keep paying the cleaner/ housekeeper, and maybe instruct them to gather the post and send it to you themselves (bypass the older relative completely if possible). If this cleaner is trustworthy, do your utmost to keep her.

Try to take an emotional step back and leave mental space currently occupied by your feelings of frustration and give yourself the mental.space you need to stick to a practical agenda. This person may well be ND with executive function problems, or may have been depressed at some level.for years, and while the net effect of whatever the problem might be is distressing for you, not all the symptoms of the problem can or should be addressed.
It's very important to keep track of the money.
It's very important that this person is supported to bathe and eat and wear clean clothes.
It's very important that utilities are paid up.
It's very important that infestations are dealt with.

The hoarding is not something you can cure or stop.
The disorganization is what it is. You can't do anything about it. "There but for the grace if God," etc... Comparison with your own life or the lives of others is a waste of energy. Focus on what is important.

@unsync great knowledge re: credit reference agency

@AttilaTheMeerkat I feel obligated as my siblings and I are the only person they have left. I also love them too - I've always seen a lot of them and benefitted from their love and attention in the past so I guess I regard this as payback time. It's just that as an adult I realise how impaired their social functioning is vis a vis "adulting" and as they are declining they are becoming less aware of the impact of their actions. I only visit every 6 weeks because they live 400 miles away from me! I actually think this is helpful as it limits the amount of time I spend on this and I do have a network in their city which makes getting tradesmen recommendations easy!

@mathanxiety I think you are right - I have to accept minimum standards and think about what keeps them safe (and me safe from accusations of neglect!). I worry that professionals entering the house might think it's in the state it is in because I haven't been doing my job as PoA properly but actually things are loads better since I got involved. And tonnes of people (neighbours, her friends, my siblings) know the the house has always been a neglected hoarded midden.

As an example - all the lights work now. When I got involved last year & stopped believing the protestations of "everything is fine" there were only functioning lights downstairs in the living & dining room (think 1930s semi so no lights in vestibule, main hallway, galley kitchen or lean to extension at back of kitchen, or crucially on the staircase) so oldie had been navigating around with her three wheeled walker downstairs / zimmer upstairs in the dark (or with a torch if she could find one in the hoard). EEkkk!

I have no idea how she passed an OT assessment the last time she got out of hospital!

I've assembled a list to remind myself what I've done which helps too. I've got support in place now for her that isn't me - the care reassessment recommended an increase which is being actioned.

She is fed, the fridge emptied regularly of out of date food, she gets her medication, her clothes get washed and repairs to the house get organised to keep essential services functioning and hopefully stop it falling down. I've very nearly got a handle on her money and can certainly access enough in the short term to cover any important expenses.

Her inability to do all of the first load of tasks and worsening confusion is why a nursing home beckons. I'm slightly terrified about where we will end up with the worsening confusion despite her mobility difficulties she does love to get out and about (as her £1000 taxi bill last month testifies). I'm concerned she is going to get lost. But she loves going out and gets a lot out of the activities she does so for now the risk-benefit is in favour of letting that continue.

On the upside pretty much every taxi driver in the city must know her which will help if she does get lost. Or can't remember the address.

Re: carer burnout - I've taken carers leave to supervise the window replacement. This is necessary for her and my sanity. I'm lucky that I can afford to do so and this preserves my annual leave for a proper holiday to recover. My siblings have also realised how broken I am by the whole thing and have taken on a more stuff/ changed things around to make it easier for me e.g I can now borrow a car locally.