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Original poster

'Outside' help - any advice on what's available? Also a vent, long, sorry

33 replies

bringincrazyback · 22/01/2019 12:25

Hi all. Just wondering whether anyone is in a similar situation to me. For those that haven't read any of my posts before, my parents live with myself and DH, albeit mostly in a separate part of the house. I'm 'unofficially' one of my dad's carers, thing is, he and my mum are starting to need more help than I am really able to give. My mum's permanently exhausted, looks thin and ill, is possibly starting with dementia, and refuses to see a doctor for any of these things. DH and I already do most of the cooking between us, we have a cleaner that my parents contribute towards (albeit my mum won't allow the cleaner into 'their' parts of the house, but also isn't up to much cleaning atm, with the result that parts of their rooms are filthy including the toilet - she gets tearful when I offer to clean for them), I take them to all their medical appointments (neither of them can drive any more), organise virtually all the shopping, do 'ad hoc' errands etc. None of which I begrudge doing.

But I'm gearing up for a conversation about wanting us to look into whether there's any additional outside help available. My dad's started to hint that he thinks I should take over absolutely everything (all the cooking/cleaning/shopping, this is a large 3-storey house mind you) and I think he's also hinting that he wants me to take over parts of his personal care so my mum can get more rest. (I'm completely put in the middle over this issue - if my mum gets to hear that he's said these things, she gets angry and says it's up to her how much she chooses to do, meanwhile my dad's telling me to ignore her and that she's in a terrible state and needs me to do it all). Every day is a farce of my mum saying she can cope and my dad telling me not to listen to her and me not knowing who to believe.

I feel awful typing this, but although in a perfect world I wouldn't begrudge doing these things, I'm just not up to it. I'm already at full stretch and beyond. I have my own health issues - anxiety/depression, menopause issues, a sleep disorder and chronic fatigue (and am feeling increasingly hurt that my dad doesn't seem to care about these things, I can't remember the last time anyone except DH asked how I am or how I'm coping) plus I can't afford not to work - a recurring bone of contention because DH earns a good salary and my parents have never understood why I feel any need to earn my own money, but I have business and personal costs to meet just like any adult human being. I'm self-employed and work from home, but I'm sometimes guilt-tripped about the fact that I'm not a housewife 'on call' for them 24/7/365, and I'm sure my dad thinks I should stop working and just live off DH and be their full-time carer. A part of me feels guilty that I'm not doing exactly that, like it makes me a bad daughter (no siblings to help out BTW). A part of me also knows my dad's being unreasonable - he's recently taken to getting upset/huffy at the prospect of me ever going for holidays or weekends away and leaving them alone, and over my spending much-needed downtime on my hobbies, it's like I'm not allowed a life and of course I know he is BU in this regard - but I honestly don't know where to strike the balance between setting limits and helping them. All I know is I need to tell them I can't do it all and can't cope any more with everything that's being put on to me.

Before this move took place, they assured me that they weren't going to expect me to do all the care if one/both of them became incapacitated, yet now all I seem to hear is that outside health/care workers e.g. physios, care workers that have come in in the past to help with washing/dressing my dad in the morning 'aren't worth the bother', 'you never know what time they're going to come', etc etc, which has led to a situation where my mum keeps saying she can cope, anyone can see she can't and the effort is making her ill, and every time she's out of the room my dad hints I'm not doing enough to help her.

My dad verbally fights me tooth and nail when doctors need to be called and can be very nasty (he's suffering from quite severe depression and I do make allowances, but it's so stressful and hurtful regardless). Several times I've been the only one to face up to the fact that he urgently needed (life-saving) medical attention and get it for him, but this is never acknowledged and I'm never thanked, I just get my head ripped off all over again the next time it occurs.

Also, and I'm ashamed to type this, but I've never done toileting or washing or anything of that nature, sooner or later I know I'm going to have to, and the thought of it just horrifies me. I realise this is pathetic but I never had kids and I've never wiped a bottom in my life other than my own. Obviously I will do it if/when I ever need to, but I just can't seem to make myself feel as OK about doing it as my dad seems to think I should.)

Sorry, I've segued into a vent here, but I just feel like I'm drowning. DH understands, sympathises and helps out somewhat, but seems to think all it takes is 'an assertive conversation' with my parents and everything will magically be fixed. He doesn't have a clue about the layers of denial, tears, manipulation, gaslighting and guilt-tripping that go on whenever I try to talk realistically to my parents about the future. I've had umpteen 'assertive conversations', or tried to. Every time I try to raise any of this with them, they just cry and try to make out I'm being unfair/too hard on them which I honestly don't feel I am.

Anyway, my question is this: I've tried to raise it with my parents umpteen times about letting me look into what outside help might be available, e.g. whether home helps still exist, whether my parents are entitled to any at-home care (I realise costs would be involved, but they always claim they'd be able to afford it and I have a rough idea of their finances and believe them - I honestly think it's just pride, and the convenience of having me on tap, that stops them looking into what's available or allowing me to.) They keep trying to tell me there isn't anything available and I don't believe them, but don't know where to start looking. I realise they might be frightened DH and I will put them in a home, but it's not what we want unless it becomes medically necessary, they've been reassured on that score.

Sorry about the long/rambling/whingeing, it was partly just that I desperately needed to get this out. I suppose my question in a nutshell is where do I start trying to figure out what help, if any, is available?

OP posts:
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SlB09 · 03/02/2019 14:17

District nurse here and couldn't red & run. What you are feeling is so incredibly common and normal in your circumstances and we support people with this type of situation all the time.

There is lots of help out there for both your parents and yourself as a carer as pp have mentioned. Your GO surgery should be able to signpost you appropriately to services as well and social services should offer you a carers assessment in which you can discuss all of the above, entitlement to benefits etc. Your parents need help yes, but they are also adults who have to accept that they need help and most of the time the lashing out and tears/manipulation is coming from the fact that they know they can't do these things and are perhaps scared of the future and frustrated/sad at the independence they are loosing - unfortunately this all comes down on you. Your right to have a frank chat with them and usually once arrangements are in place everyone is much happier. But you need to stick to your guns and have a firm line that you hold to in respect of what you can and cannot do. If your parents can afford it, a private carer often works out really well as they have the same person who you have more scope to get exactly what you want/need and they may feel more control in that sense and be more likely to accept the help.

You are doing such a hard job and doing so well to keep going but everyone has a tipping point, you need to look after yourself so you can continue to look after them. Hugs xx

IamTheMeg · 03/02/2019 13:58

Bloody hell crazy, I could have written this email myself! I'm sorry sorry you're suffering too. I've told my parent how I feel and also taken a step back.Sad

I think we can all only do it all for so long!!!!!!

MereDintofPandiculation · 31/01/2019 16:07

That’s the shift to make which they will not accept- you are now the adult / parent. That's true in another sense. They're lashing out at you - try not to take it any more seriously than if it were an upset toddler speaking.

I'd find it very hard to accept being told what to do by my children. And I expect I will find it hard to understand they're doing what they think is best (especially as it will be clear to me that they don't understand the situation)

Grace212 · 30/01/2019 18:01

bring hugs, so sorry you are going through this.

thesandwich · 30/01/2019 17:42

That’s the shift to make which they will not accept- you are now the adult / parent.
You have the power. Struggled with that one but it’s true. 🌺🌺

Original poster
bringincrazyback · 30/01/2019 15:41

Thanks @thesandwich, doing my best. wobbly smile

I think what hurts is being treated like a naughty child who's just trying to hurt them, when all I'm trying to do is keep them on the planet as long as possible and do what I can to grant some quality of life. Unspeakably painful.

OP posts:
thesandwich · 30/01/2019 15:28

Oh bring I am so sorry. 🌺🌺🌺 step back, do your research and look after yourself. 🍫🍫🍫🍷🍷🍷

Original poster
bringincrazyback · 30/01/2019 14:58

I was wrong when I said I thought they were finally listening the other day. I'm too upset to paraphrase so I'm going to paste in bits of what I just emailed to DH:

[...] there's been an almighty bust-up this end, my dad's being downright nasty because he's fed up, won't take his blood pressure or let me do it, says he doesn't feel well but won't let me ring the doctor, and I snapped today and told him I couldn't take any more. I've had the usual tears/victim stuff from my mum, nothing from my dad because apparently I don't even deserve words when I tell him how much he's hurting me and that my depression is worsening because of it. Not asking you to get involved or to post-mortem it with me later or anything like that, just asking you to understand that I might still be upset tonight. (Of course, he'll be all smiles if he happens to see you, but according to my mum 'that's just how it is' and I'm not putting up with it any more.) And of course as usual it's me that's stuck with the guilt in case he now gets upset about what I've said and takes a turn for the worse, and because my mum's used her usual non-existent coping skills and just gone off crying to smoke as per fucking usual.

Waiting till I've cooled down a little before making this decision, but at the moment I'm sorely tempted to book my week away for next week, tbh the only thing stopping me right now is [something social that's happening].

Going to be using the weekend to do a bit of research online to find out what sort of outside help is available, because if things carry on like they are now, I'm taking a step back so they can get a sense of how things would be if I wasn't here as their fucking unpaid servant.[...]

I'd be sitting here sobbing my heart out, but the pain goes too deep for tears.

OP posts:
PearsandWine · 29/01/2019 14:58

You are definitely doing the right thing by drawing your boundaries OP. If you push beyond them you will come to resent your parents and will only overstress yourself.

Having been through this with my mum, I also agree with the "tell don't be told" approach. If the house is not clean and they need personal care then they need to accept carers now.

My mum was very resistant and I had to say the carers were coming at 9am on Wednesday and that was that. Somewhat to my surprise she accepted them with no trouble at all and actually looked forward to them coming for the company as well as the care.

I googled local care agencies and struck lucky with mine. It was locally owned and we had the same two carers throughout, splitting the week between them and coming in three times a day. They did a bit of everything, cooking, cleaning, personal care, tea and a chat. They were fab and I cannot thank them enough. They definitely enabled my mum to stay in her house 4 or 5 years longer although she continued to deteriorate and did have to go into a home eventually.

You should probably also think about having a needs assessment by adult social services to get your parents on their radar (though our local ones were bloody useless - that's another thread)

Grace212 · 29/01/2019 14:26

OP I think the other thing for me is being single

I never wanted to be even partly responsible for someone else. Responsible in the sense that sometimes your friends get ill, have surgery, whatever, and you take care of them - sure. But an elderly parent feels a lot different than that. When dad died, I said on the main board, I feel like I've suddenly been given a child to look after with mum (though bless her, she is trying really hard to toughen up).

I never really imagined this stage, partly because we were told dad didn't have long about 20 years ago - you will be pleased to hear he enjoyed good quality of life most of those years - and also mum is so very fragile, I couldn't imagine her reaching 80, but here we are.

I grew up in the days when 3 score and 10 was considered impressive - so again, even without ill health, never really imagined this. i thought myself lucky to still have parents on my 40th birthday.

Original poster
bringincrazyback · 28/01/2019 19:11

Thanks ladies. It really does help to get some feedback from people who've actually been there.

I am childfree by choice and I've often thought the elderly parent thing might have been easier if I had wanted to have children - or indeed if I'd been more of a people person. I'm a solitary soul, is the reality - my mental health really suffers with too much people interaction.

@Grace212 I could have typed this word for word, I'm exactly the same and no it doesn't make things any easier! So sorry to hear about your dad.

@thesandwich yes I definitely need a mental rewire! Still going to pursue the counselling, though not had time to do anything about it yet. Definitely need to, though.

OP posts:
Grace212 · 28/01/2019 18:26

I think what you've done is amazing - they live with you and you have given them so much!

I am childfree by choice and I've often thought the elderly parent thing might have been easier if I had wanted to have children - or indeed if I'd been more of a people person. I'm a solitary soul, is the reality - my mental health really suffers with too much people interaction.

I don't think it's selfish at all that you don't want to do those particular things for your parents. I think what you are doing is more than enough - not that I even have a bar set really - I don't think anyone is responsible for their parents.

as a point of interest, my mum is 80. My dad died 3 months ago. One of mum's neighbours, in her 80s, actually said to me "don't forget it's your mum's job to look after you too - you are her child". That's the kind of thing you forget at 43, and tbh I'm still not sure how i see it, but it was interesting to hear that from another person in mum's age group.

I don't think my parents would have expected or wanted me to do that type of care. At least, I really hope my mum never expects it of me, but I have said to her that if she needs that type of care, she will have to get it from an external agency, and much as I love my mum to bits, I feel no shame in saying that. I am not a trained carer. My belief is it is a very skilled - and horribly underpaid - job.

thesandwich · 28/01/2019 17:38

You are NOT being selfish. You are enabling them to live as independently as possible and being a daughter not a carer- respecting their privacy. Please think about counselling- or speak to carers association etc.a bit of a mental rewire needed here!! To be any use to your parents you must be well.
🌺🌺🌺

CMOTDibbler · 28/01/2019 15:29

You are not being selfish at all. In fact, you are doing the opposite by making sure that they are able to stay at home longer by getting the right help, rather than ignoring it all until it falls apart. And also by ensuring you are able to have a marriage and a career rather than ending up running round after them all the time.

Original poster
bringincrazyback · 28/01/2019 15:06

A bump and an update. I finally managed to say my piece about the lot of the stuff that's been bothering me, including the 'personal care' issue. They listened (which isn't always a given), didn't really say much (except to repeat their claim that if there were ever things they couldn't do for themselves they were willing to pay for help), but I don't mind that, because I mainly just needed them to listen without invalidating or guilt-tripping me/resorting to tears/making me out to be the bad guy which tends to be their usual MO, so they can think about it in their own time. The non-reaction is making me a bit apprehensive in case the other shoe is going to drop later in the form of a tearful or angry outburst of some sort (also something that tends to happen), but at least I feel I was heard for a change.

Which feels like a relief in some ways, but the guilt is kicking in now and I'm worried I might have made them feel like a burden, or otherwise bad about the living arrangement in some ways. Feeling like a bit of a rubbish daughter even though all I've done is state a few boundaries/limits. Bottom line is I'm ashamed of my unwillingness to engage in personal care on a day-to-day basis if the time comes, I guess, even though I have made it clear I will do it if there's ever an immediate issue. Can't seem to shake the feeling that an unselfish person/truly mature adult would be happy to do whatever was needed, however often it was needed, in the spirit of 'they've done so much for me, the least I can do in return is a bit of bathing/toileting' or whatever. As in 'what kind of daughter makes her own parents pay someone to wipe their bottom?' Sad

Truthfully, I feel like I was too selfish to have children and now I'm too selfish to even say I'll handle my own parents' personal care. In a bit of a 'self-loathing' kind of place which I know is partly my depression talking. So I'm partly posting for support, I guess. Does it sound like I'm being selfish about this?

OP posts:
MereDintofPandiculation · 23/01/2019 09:30

finding my dad drying out incontinence pads My dad does this! Puts them on a radiator. When challenged, he says they're waiting to go in the bin.

bring Yes, prioritise counselling. You can't do anything for anyone else except from a position of strength.

IrmaFayLear · 23/01/2019 09:11

A note of caution about when elderly parents live with you:

My aunt looked after my granny, albeit in a type of annexe. She has said subsequently that although she was glad to do it (even though in the end my granny did have to go into a home as she needed to be lifted with a hoist and my aunt was 75 by that time), she would advise anyone and everyone not to.

She said her home was not her own. She had to let carers/doctor/cleaner/relatives in, at no set times. Carers could come between 7am and 11am and the "evening" could be at 4pm - there was a long time after this that care such as toileting was needed. My aunt tried to do everything herself, but as my granny became more frail she found herself only able to dash out for the briefest amount of time to the shops etc in case there was a fall/needing to go to the loo etc etc. She couldn't go out for the day.

Relatives would turn up and make suggestions/criticisms and she said she'd be screaming inside as she served them cups of tea and cake before they trotted off again and appeared six months later.

Twillow · 22/01/2019 20:56

Really good idea to get counselling for yourself. And make sure its a solution-focused one, not a winge about your feelings type (though that can have its place, you don't need validation of what you already know, you need to be supported in personal growth and problem-solving.
Can I also recommend books like Co-dependent No More for helping to break the FOG cycle - Fear, Obligation and Guilt!

thesandwich · 22/01/2019 20:46

Great post cmot.
Bring, so glad mn is helping. Please prioritise counselling for yourself- as an investment to enable you to be any use to anyone else. And you deserve happiness.

CMOTDibbler · 22/01/2019 19:37

I'm glad its helped to talk about it all. Without the ladies of the Elderly Parents board I would truly have lost it by now as no one else I know is supporting parents in this way and sometimes I'm ashamed to tell someone who doesn't get it about having to up carer visits as mum is going out wearing pyjamas, or finding my dad drying out incontinence pads. Wheras here you can laugh at things like the episode of my mum and the dead cat, or have a cry about the point they no longer know your name, who you are or that they have a daughter and they just get it.

Hope you find a way forward, but either join the long running thread, update this one, or start new threads when you need the support. Its like having the mental image of a support crew when times are tough

Original poster
bringincrazyback · 22/01/2019 19:24

Thanks again, folks - this is all really helpful stuff and lots for me to think about. They've been OK today - I often feel like they sense when I'm getting to the end of my tether and their behaviour towards me improves laughs wryly but I know that doesn't mean anything's 'fixed', it's just a better day. There are definitely some big decisions ahead. Really glad I posted, even just getting some perspectives on this has helped me a lot. I'm on the long-running thread, have only got around to posting once on there so far as I've been feeling a bit overwhelmed, but will keep everyone posted.

I think that sadly it is true, as one PP has mentioned, that on bad days they adopt a bullying posture towards me. I honestly don't think they mean to at all, and it's not been their default behaviour over the years, but controlling behaviour has definitely been used towards me my entire life, and yes sadly it can tip over into bullying, I'm not going to make any excuses for them on that score. I have all the sympathy in the world for their position, that's why I do so much, but the dynamic definitely needs to change as a few people have pointed out. They are damaged people themselves IMHO (what I mean by that is that I don't feel either of their upbringings were emotionally healthy, my dad's in particular was quasi-Victorian and very tied up in notions of emotional control and containment) and their parenting of me when younger was somewhat clumsy in emotional terms. They basically only have two modes - denial mode and 'outburst' mode, and unfortunately illness/tiredness/stress have exacerbated this to the point where it tips over into a verbally bullying stance at times. I'm 51 and I still end up feeling about 6 at times. sad face

As well as the practicalities that will need to be sorted out over time, I've kept meaning to try and seek out some form of counselling for myself, as with my depression I can't process all of this in a healthy way without some form of guidance. I must get around to doing something about that, just so busy and tired every day that it has drifted somewhat, along with a few other facets of my life. It definitely helps to get some advice about the practicalities from people who have been/are going through it, too, so thanks.

OP posts:
thesandwich · 22/01/2019 17:03

I also found the count6 council website had lots of useful contact info.

Twillow · 22/01/2019 15:07

Ring Age UK - they can send someone to help you fill in the paperwork for Attendance Allowance. As someone's said, it's not means tested. You - or rather they - can spend it as they like: for example on anything they are no longer able to manage. That could be a cleaner/care/gardener etc. Remember to fill in the form using THEIR WORST DAY as a typical day - it's not going to get better, only worse, sadly.
The agencies can be awful, not because of the carers, but because of the impossible time demands that are placed on them by their agencies. For example, they are not paid for travelling time or fuel, and given 15-30 mins to wash and dress client, prepare food and feed them. The best option for us was a private carer, who initially worked for an agency we used but left them. If you ask around there will very often be someone with recommendations. We managed to keep my mum in our home that way, with me doing occasional physical care (but I was willing, and she was not objectionable! However, even in these circumstances it was a very saddening experience to see the frailty and incapacity of a formerly strong, active parent ...)
Why don't you start with the cleaner - gently, gently, just a hoover and a chat first? Or take them out for a garden centre tea and have the bathroom done over while they're out?

MereDintofPandiculation · 22/01/2019 14:41

As others have said, you need to stay firm. It's OK to say you can't do more. Don't allow yourself to be guilted into it. (It would in any case be a stop gap - the care would soon get too much for one person, even someone in full health)

They have two options:

  1. they get carers in
  2. they go into a care home.

There isn't another option, of you doing everything.

So maybe if you present carers as being a means of keeping then out of a care home?

And perhaps get DH to have a few "assertive conversations" and protect his wife?

(Oh, and don't do toilet care. It's every bit as bad as you imagine. There was someone on here the other day talking about cleaning up their Dad with their head literally below his testicles just praying he wouldn't drip on her hair, and I was thinking "whenever I've done the cleaning, I've always done it from behind, with my nose up their arse")

Spudina · 22/01/2019 14:37

Bless you OP. What a horrid situation.You need to explain all of the above to your GP, as your health is at risk too. They and the District Nursing team can help you start getting things in place. In your shoes I would make accepting help a condition of them continuing to live with you. You have to be assertive, as if you go under, their lives and options get considerably worse. The Carers Trust are also good. Re carers:Carers tend to be easier to arrange during daytimes, when you can get them generally four times a day (unless you are paying for private 24hour care) Night time provision is less easy to organise, though hospice sitters can be used in an End of life scenario. It's tricky. I can totally appreciate that you don't want to do your Dads personal care, in which case I think them staying living with you indefinitely isn't going to work. Are you getting attendance allowance? Social services could help with some day centre relief for you all. Also, look into transport from the hospital for some appointments. You don't have to do them all. Good luck.