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In a desperately sad situation .....what would you do? - Carers UK Forum

In a desperately sad situation .....what would you do?

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Hello everyone first of all I'm new on the forum. I'm in a desperately sad situation. I'm not sure how common it is and would appreciate any suggestions as to the best thing to do.

I'll try and keep it as brief as possible.

I was thrown into the role of a full time carer when my 86 year old mum came out of hospital after having broken her hip. To be specific her hip has actually healed but pre existing arthritis in her knee has led her to lose the use of her legs and she needs a wheelchair. I'm a single man..45 years old..I've given up my job and sleep on the floor as it's a 1 bed flat so as to be my mum's personal carer.

Here's the thing...my mum has OCD and other challenging behaviour ..for example she refused point blank to have an outside carer come and share the workload with me...I believe this is more out of anxiety than anything else but she doesn't actually communicate this.........but probably more to the point social services have made it clear that they can't do anything unless my mum consents to having a carer.....the same would apply to any private agency I'm sure.

I have an older brother and twin nieces (24 years old)...and my nieces actually live 10 minutes away....neither they or my brother have volunteered to do any hands on caring to help me but at the same time my mum doesn't want them to do any hands on caring in any event.....possibly she's awkward or uncomfortable about it but either way the hands on caring has all fallen to me......I feel boxed into a corner and let down by my family.

Of course I love my mum...and want the best for her....but surely it's too much to ask 1 person to do all the caring all of the time without any relief. I feel scared that this is how my life will be for the rest of my mum's life with no one willing or able to help me. I'm looking into getting respite stays but I'm anxious to know what could be done for the long term.

I have thought perhaps the only thing is to set a date in the future where I actually leave making sure alternative arrangements can be put in place at short notice and letting my mum know this.

I would appreciate people didn't reply saying "try and talk to her"....I've been down that route.

What would anyone suggest? Has anyone had any similar experiences? Also does anyone know what would social services do if I did leave or informed them of my plan to do so....(if I decided to) ie. what is the procedure taken by social services if the regular carer leaves and the person cared for refuses an outside carer to come.

Many thanks
Hi, and welcome!
Sure, you aren't the first person to find yourself in this situation, and it is very scary. I made the choice, with my family, of placing an elderly relative with dementia and complex health needs in a nursing home (against their wishes) when, after many years, it became too much to handle at home, and it was the best possible decision we could have taken and in the end, worked out very well.
I'd like to offer a few suggestions.
Firstly, your mother is being completely unreasonable by denying the possibility of other carers coming in. As such, she is effectively forcing your hand. Nobody should ever enter such a one-sided relationship without knowing their rights.
You have no duty to care 24/7, none at all. It is entirely your choice.
You can indeed phone up social services and tell them that you have decided to quit as of 1st December and hand over all responsibility to them.
And/Or you can tell your Mum in no uncertain terms that she is being completely unreasonable, making sure that you keep your other relatives in the picture.
Nursing homes are not the nicest places to live, sure, but they do offer a perfectly respectable way of handing this situation on.
Good luck, and stay in touch, because your caring doesn't finish when a relative goes into paid care, far from it: your support will continue to be very important.
PS, you also need to ensure that she has signed a legal power of attorney and a will. Without these she is consigning you to a great deal of extra expense and work. Yes it will involve some small legal fees, but it is well worth it.
From what you say, your mum should never have been discharged to this situation in the first place! Write to the hospital chief executive and ask why a Continuing Healthcare Assessment did not take place, which involved you? Head the letter "Formal Complaint". Ask them to arrange an URGENT assessment. Mum should have had an occupational therapist visit the flat, making sure she could live there independently. If she was refusing outside help, then surely they should have realised it was a one bed flat?!?! My own mum steadfastly refused to do whatever I suggested. Had she listened to me, she would have been nursed by a team of nurses, 24/7 in her own home. Instead she is ending her days in a nursing home. It was HER choice.
I'm very sorry that you are in this position, it seems no-one is really bothered by how your life is affected by this.
You have been given some good advice, I don't really know much about your situation but it seems that everyone is perfectly happy for you to carry on regardless, so for the sake of your health and well-being, any changes will have to come from you.

I think you should put your life, and what you want out of it as a priority. You don't have to be your mum's carer, you can choose it, and you can choose which bits of care you want to be responsible for. I think you're right to consider whether you want to be a live in carer, sleeping on the floor is not good for you. If you do want to live in, there are extras you can ask for along with care packages, such as the carer's grant (or your local authority's equivalent)

Perhaps ringing the carers uk helpline would be of some benefit in regards to your entitlements, and the obligations of statutory agencies (they don't always tell us carers what they can or should be doing!)

As for your mother and her refusal to have carers in, you might need to test this. Obviously you have to refuse to do the care activities you're currently doing. The point is to put the onus back to your mum and social services, they need to find the solution between them rather than expecting you to be it.
hi Juan Carlos,

And welcome to the Forum. Many of us have and do feel as desperate as you do.

No, you cannot be forced to care. If you decide to withdraw your services, Social Services would be forced to step in and most likely your mum would have to have care workers. As for family members, don't get me started. Many of us have family members who do nothing or just make themselves a nuisance from time to time.

It is a big step to take and maybe some time away from the current situation would help. Personally, I would tell Social Services that the current situation cannot continue and that mum needs urgent respite care of at least two weeks. I did this myself and was surprised how mum behaved much better for others than me! This will give you some rest and thinking time of what you want to do next.

Maybe you decide to provide no care, maybe some care. It does not have to be an all or nothing situation. But only you can decide.

Good luck, and we will be here to listen and do a bit of virtual hand holding whatever you decide.
Hi Juan. You cant possibly carry on like that.
You must contact social services. Did they realise that you were sleeping on the floor?
You are going to have to plan what you are going to do, because at the moment you dont have anywhere to live and you dont have a job, so you must sort out your finances.
Then you must consider how much care you can give. Even if you decide to care for her during the day so that you can claim carers allowance you will need care workers coming in. I know that your mum is resistant to this (arent they all?), but if you tell her that its either that or you wont be able to care for her at all and maybe will have to go into a home, then perhaps she will see sense.
Be prepared for a lot of emotional blackmail from both your mum and from social services and make sure you stand your ground.
Hello, and welcome - everything you say echoes so much with so many of us here!

So many of us are 'surprised into becoming carers' - one day we're not, and then something happens, and lo and behold, we've been transformed over night into carers! It sounds like that happened with your mum being taken into hospital and then the 'old way of life' (her living indeendently) couldn't continue. (With me, just to plot you in, it was a phone call just over a year ago from my very independent MIL that she 'couldn't face' another Scottish winter!)(so I 'rode to the rescue')(sigh!)(it's OK, she's now, finally, in a Home near me)(hurrah!)

I think you are discovering that what we can cope with 'short term' around an 'emergency' like a hospital admission, is NOT somethingthat can be sustained long term. You've done the 'emergency response', but you don't need me to say that spending years of your life as you are now is not something that is sustainable.

As the others have said, you have no legal obligation to do anything for your mum (as your brother has realised!!!!!), and if you walk away SS has to step into the breach.

Legalities apart, however, tackling your mother is really the first thing, isn't it? She has, again as others have already said, got you 'cornered'. She's turned you into her nurse, servant, housekeeper, chef, etc etc etc - and not even giving you a day off!

Re outside carers - I'd say just about everyone here can echo the 'he/she doesn'twant outside people coming in'! Well, no, I'm sure they don't. But that doesn't mean it isn't going to happen because adult children are not nurses, servants, housekeepers, chefs etc!

May I suggest a possible 'sideways' route into getting her to accept outside help? Hire someone yourself, for yourself. You say that the person is coming in to give YOU a hand! They are there to help YOU, not her. Be there completely with the first few visits, so your mum gets used to them, and then 'back off', first of all just, say, into the kitchen to make some tea, or dothe washing up, etc, so your mum knows you are still in the flat, but the carer is with her in the living room/bedroom. Then, 'pop out' for a short while, eg, the newsagent, shop, walk around the block, etc.

This is the technique that most new mums adopt when introducing their baby/toddler to a nanny, and it does seem to work. It's a matter of 'acclimmatising' your mother to the new person in their lives.

Secondly, and this is very important, do NOT wait for her to 'agree' to this. She won't! She'll try and 'rope you back in' (through a mix of selfishness and fear of abandonment). But from now on, one of the 'new truths' in your life is this - you no longer 'ask' your mother, you 'tell' your mother. Nicely, kindly, but firmly. 'This is the way it's going to be now, or else I won't be able to cope and I will have to leave you alone' etc. Remember, bottom line is you can tell her - if you don't accept external carers I'm out of here! (Ignore Guilt - that's another whole issue!)

When you do move back home (!), then again I would suggest withdrawing 'gradually', spending just one or two nights away, then some more, until finally maybe you are only spending one or two nights with her, if at all.....

You mention OCD, and whilst only having it very (very!) mildly myself (I think!), I would say it is all about Fear, and all about Control - we FEAR the future (disasters happening!) and we seek to CONTROL outcomes in our favour by going through our 'precautionary rituals'. OCD, as you know, feeds on itself, and can become utterly dominating of the victim's life, and it would seem that your mother might well want to 'control' you bcause she 'fears' abandonment?

All the best to you - here on the forum you'll get some excellent practical advice re what is available from SS etc, and also pyschological encouragement as to where todraw the boundaries you need to draw between your mother and yourself, so she is 'happy enough' and so are you! (No reason why she should be as happy as she wants to be at your expense!)(ie, you BOTH have a right to some happiness - you don't have an obligation to sacrifice yourself completely for her!)

Kind regards for now, Jenny
Come back to us on the forum as often as you like. In the past I was repeatedly taken for granted that in the end I developed a very serious health issue, attributed mainly to my caring for so many people - up to 5 at one stage. Feel free to ask us anything. There are so many people here who have direct experience of the trials and tribulations of caring for elderly relatives. Many carers say that the worst thing of all is not actually caring but dealing with "officialdom". With severe financial restraints on hospitals and social service department, it seems that more and more people are not being given the whole story. Hospitals want their beds back, so they discharge patients with problems which then become the responsibility of Social Services instead. Sometimes, they seem to forget that their actions are severely affecting the lives of others. I will always complain in the hope that someone else isn't going to experience what has happened to me. Unfortunately, I seem to be doing a lot of complaining right now, when what I really want to do is sit in front of my sewing machine all day!
Hi and welcome
You have been put into an impossible situation. Without repeating what has already been said I would urge you to contact SS and clearly state the circumstances you are in and that this can not continue. No matter how much you love your mum your needs are just as important. As for you sleeping on the floor that is just unacceptable and detrimental to your own health. Don't let anyone make you feel guilty . This has absolutely nothing to do with how much you love your mum. Your family has already shown you by their inaction that you can decide if or how much care you are willing/ able to give your mum . SS said that they can't do anything until she consents. It's amazing what they can do when you force their hand. I think they tend to play on the family members emotion and guilt. Decide what you need/want and stick to your guns..
As already mentioned there are benefits that you are entitled to, careres allowance and possibly your mum. I know age concern have a lot of info and possibly could help .
Please come back to the forum and let us know how you get on and take care of yourself