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

(34 Posts)
bringincrazyback Tue 22-Jan-19 12:25:03

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?

Solasum Tue 22-Jan-19 12:29:02

I can’t advise where to look, but just wanted to give a bit of solidarity.

I’d also be extremely blunt with them. Either external help starts now, cleaner for starters, or they will need to move into sheltered housing.

CMOTDibbler Tue 22-Jan-19 12:44:05

I hate to say this, but the only way things will get better is by you stopping thinking of them as the ones in charge and start parenting them yourselves. Its a really hard change to make, but when I stopped expecting anything back (I literally think of myself as a call centre to dad now) and started laying down the law things did get easier.
And it wasn't easy - I had to sit my dad down and tell him that either he accepted that they needed cleaners and carers or mum would have to go in a home. His choice. He cried, and I stood firm.

So, my parents have:
carers 5 days a week to help with laundry, supervise mum in the bath, generally keep them personally clean and dressed and keep an eye on things
cleaner 2 days a week
gardener once a week
handyman on demand
volunteer car service to appointments
Eat out every lunchtime, carers leave sandwiches for tea
They also have district nurses every day.

When things go wrong for health reasons, they have agency carers 3 times a day, every day, but their normal ones are independant and fabulous. We found them through the district nurses, but other places to ask are local vicar (they see and hear all!) or asking other elderly people who may have used or heard of carers.

So there is loads of help out there, you just have to hold firm that they need it and if they don't let them in then you will have to Talk to The Doctor.

IrmaFayLear Tue 22-Jan-19 12:57:05

You are not alone. I think many, many elderly people become like this.

Unfortunately the street is one way only. There is no reasoning to be done. You have to be either extremely fierce and tell them what is going to happen, or accept that you will be drawn in to being a full-time carer.

The pil ended up going into a home because they would not have any help. Mil was doubly incontinent, yet carers were sent away. They could not cook, yet my Wiltshire Farm Foods set up sent fil off on a rant that he wanted things to go back to how they used to be. He was adamant that if only mil could get well (from dementia - I think not!) then they'd be back to going to John Lewis and garden centres etc etc.

As for help, I think the doctor is a bad idea. In my experience, if you are self-funding (which I assume they will have to be) social services aren't interested in the slightest. I would seek out a reputable home care company which offers a range of services. I would ring and ask an (expensive private) care home for recommendations.

bringincrazyback Tue 22-Jan-19 13:27:04

Thanks peeps... I'm still processing and will probably have some questions at some point, lol but even just feeling 'heard' and understood, and hearing how others cope, is helping.

wigglypiggly Tue 22-Jan-19 13:41:24

You need to sit them both down and tell them what you and your e.h. can do to help, set boundaries and say you will not e able to be full time carers, you need time to yourselves a d don't feel its appropriate to be offering personal care if you don't want to. If they wont see a doctor maybe they would see the nurse, some surgeries have tracker nurses who keep an eye on the elderly, she might assess their needs and speak to them, also there are social services and community ity occupational therapists who could visit them, do a care needs assessment and look at any adaptations in the houses that might help. Are they claiming attendance allowance and carers allowance. Age UK, The Red Cross, Dementia groups all have info in their websites.

FaithFrank Tue 22-Jan-19 14:08:41

If you want to start looking into what help may be available, Age UK's advice line might be a good place to start. When we were going through similar with my PIL, it was helpful to talk things through with them.

They will both be eligibile for needs assessments from your local adult social services. You will also be eligible for a carer's assessment. The council website will have info about these.

thesandwich Tue 22-Jan-19 14:12:30

Great advice from some seasoned wise ones who have been there..... I would emphasise applying for carers allowance with the help of carers uk or age uk because they know how the forms are read. Non means tested. Order hard copies by post then they are date stamped and payment dated to the date- dm got £300 that way.
Your mindset is key- YOU have the power now. Choose.And be firm. Facilitate, arrange, but limit what you do. Great suuppport on the long running elderlies board who will listen and help you be strong!

FuckOffMeadowSoprano Tue 22-Jan-19 14:16:55

I've never done toileting or washing or anything of that nature, sooner or later I know I'm going to have to

NO YOU DO NOT HAVE TO.

You can draw a line and say no. You will not be doing any personal care. Tell your father that if he is concerned about your mother's health then he will agree to you bringing in outside carers. Tell him very strongly that you absolutely will not do it.

It sounds like he is very accustomed to being able to bully you, and you are used to being bullied so you do not feel that you have a choice. You do have a choice. Tell him no.

Spudina Tue 22-Jan-19 14:37:46

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.

MereDintofPandiculation Tue 22-Jan-19 14:41:53

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")

Twillow Tue 22-Jan-19 15:07:25

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?

thesandwich Tue 22-Jan-19 17:03:15

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

bringincrazyback Tue 22-Jan-19 19:24:21

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.

CMOTDibbler Tue 22-Jan-19 19:37:20

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

thesandwich Tue 22-Jan-19 20:46:43

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.

Twillow Tue 22-Jan-19 20:56:52

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!

IrmaFayLear Wed 23-Jan-19 09:11:48

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.

MereDintofPandiculation Wed 23-Jan-19 09:30:59

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.

bringincrazyback Mon 28-Jan-19 15:06:38

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?

CMOTDibbler Mon 28-Jan-19 15:29:34

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.

thesandwich Mon 28-Jan-19 17:38:30

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.
🌺🌺🌺

Grace212 Mon 28-Jan-19 18:26:28

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.

bringincrazyback Mon 28-Jan-19 19:11:26

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.

Grace212 Tue 29-Jan-19 14:26:53

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.

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