Really struggling with disabled parent.

[Duchess379]

I don't actually know where to begin. I'm 45yrs old, an only child & am the sole carer for my mum, who, in 2017 suffered several strokes which culminated in heart failure & she needed a triple heart bypass. Whilst recovering, she got a blood clot on her lung. Since that time, her mobility has got so bad, she is constantly falling over, causing her more injuries.

She was hospitalised last month because she was complaining of chest pains. She ended up in hospital for 4 days. Dr's noticed her mobility was bad & arranged physio & zimmer frames to help her move about. When she got home, we had nurses come around for 10 days to help her wash etc & she was supposed to have a physio attend. He came once & said he's going to his sister wedding in India for 3 weeks so someone else would fill in. No-one has come back.

Now mum's mobility is non existent. She is literally dragging her right leg. And then her knees buckle & she drops like a sack of potatoes. She isn't a small person & I struggle to get her back up again. In the past 2 weeks she's crashed into a TV & mirror wardrobes, smashing them to smithereens. She falls over every day somewhere in the house, in her bedroom, the bathroom, the landing. She's covered in bruises & is such a dead weight, it's impossible to help her. If I try pulling her arms, she screams like a little girl & cries that I'm hurting her. I nearly had to call for an ambulance a few nights ago because I couldn't figure out how to get her back up.

When we finally have her on her feet, she can shuffle towards the sofa or her bed. Then we eventually get her on the bed & I think she's settled, she wants to get back up for the toilet. It takes her so long to get back up that sometimes she doesn't make it & wets her clothes. So now I have to strip her & get clean clothes. I get her back in bed again & 20 mins later I can hear her clonking about with her Zimmer frame, then 'thump', she's fallen over. Because she wants her hairbrush. Or her massage wand. Or something else. She's not comfy. Pillows are too hard. Bed is uncomfortable. It goes on & on. I literally don't have any time to myself.

And it's almost like she doesn't want to try. She gets close to the bed/sofa & just collapses.

I'm just finding it all so hard & was wondering if anyone else out there in the same situation?

Op, you need to contact your local adult social services via the council and tell them you need an urgent assessment as you are absolutely 100% unable to provide care and your mum is at risk of serious and immediate harm. You must absolutely refuse to do any and all care for her. Only then will they trigger the correct care protocols.

Was coming to say the same - adult social services, say she has no help. If she has savings over £16k she will probably have to pay so in that case could be easier just to call care agencies yourself rather than wait. Alternatively adult social services can arrange respite in a care home whilst longer term decisions are made - I think it's 6 weeks before you have to pay unless she meets the means test

How is her mental capacity? Does she understand her own needs and the impact it is having on her and you?

It's all very well saying contact social service and trigger the care protocols, whatever those are supposed to be. If she has mental capacity she can say no to an assessment and no to respite.

You can however take a step back and tell her you can't cope anymore and hopefully she will realised how much she is relying on you and take help from social services.

It's very easy for people to say call social services and say you won't be helping anymore but it's never that simple. Most people couldn't do that to their family member and back off completely. Social services are not the magic answer.

There's barely any care available at the moment, dom care agencies a re struggling to recruit and handing back packages of care and respite is filling up with people who have no other option as there's no dom care. So even if social services could respond straight away there's not likely to be much help around.

Not trying to make you feel worse OP, this is just reality at the moment.

Obviously that doesn't mean don't ask for an assessment (if mum agrees) but don't expect instant help. It would get the ball rolling and might help you feel there's light at the end of the tunnel.

If mum is likely to be a self-funder and consents then maybe see if you can source care yourself - often (some) providers suddenly have room when someone is paying privately as there's more money on offer.

Speak to the GP as well, as having care coming in won't solve the problems of wetting herself as that is not something that can be timed to have carers there. Same with falls.

Also think about and talk to mum about possibly going to residential care long term - e.g. if you were not there would she be okay at home on her own, even if carers did come in. Doesn't sound like she's safe at the moment.

I'm third-ing. Contact Social services and ask for assessments for your Mum AND for you as carer and for her health needs, not just her social care and daily living needs. That's 2 different assessments.
Take any support they offer even if it's not exactly what you want. As the next time you ask, they will have to offer the next step in carer support. Even if you have to pay towards care I think it's still worth requesting assessment as your Mum will be in the system for when things become really bad.

And think things through before the assessment - what do you want ? what does your Mum want and how are they different? Sounds like you're living with her - is this on a permanent basis or until she's 'back on her feet' ? Do you work? Are you claiming Carer's Allowance ?

When she falls again - don't even try to pick her up. Phone 999 and ask for the Fire Brigade. You'll wait for hours / days for an ambulance and the Fire Brigade have lifting equipment.

Duchess - I warn you, you'll have to be persistent, you'll have to be firm. You will have to say 'No I can't do this' again and again. Do not be fobbed off. And be aware, what you want and what your Mum wants may very well be the complete opposite from each other. Bottom line - if you don't want to be your Mum's full time carer, you don't have to be. It may take time for you to make peace with this, and that's fine. But if at the end of the day you become burnt out or injured through caring for your Mum, you will not be able to care for her, so there's no point in being the martyr.

Thank you to all of you for your thoughts - I really appreciate it. Our living situation is complicated. I think there is an underlying MH issue with my mum - Asperger's or similar. She has never been able to manage her life. Everything is too complicated & when it gets too hard, she shuts down, glazes over & tunes out.

My dad moved out when I was a teenager because of the constant rows. So it was left to me, at the age of 16, to help mum sort our finances out. I was at college but worked at the weekends. My money went towards the bills - I paid for the food. We barely had enough money but we managed. Dad didn't pay maintenance or the mortgage, he just got up & left.
I ended up taking over the mortgage at 23 as I was now in a well paid full time job. The mortgage & repayments were a mess & I remortgaged & got a better deal, better interest rates & a much lower monthly repayment. But it's come at a cost. My life. I have now become a single parent with adult kids! And my mum is the big toddler! I've actually sold the house we're in & we're moving into a bungalow because mum can't cope with stairs & quite frankly, neither can I. Run up & down, taking her breakfast, making her coffee, bathing, hair, washing etc. I've turned into Cinderella with no fairy godmother in sight. It's all a big bloody mess. I wish I'd left at 23 & let her get on with it to be honest.. 🤦🏼‍♀️

So who owns the property Duchess ? If it's her property - you will need to sort out things legally to retain your investment.

What would be your ideal solution ?

What would you settle for ?

What's your absolute deal breaker ?

@DPotter

So who owns the property Duchess ? If it's her property - you will need to sort out things legally to retain your investment.

What would be your ideal solution ?

What would you settle for ?

What's your absolute deal breaker ?

House is in joint names. I've been the main earner for the last 20 yrs & basically paid everything. I honestly don't know how to resolve this tbh. Care homes are too expensive for the care she needs (£1000 p/w). And all our savings will be gone soon in the bungalow. I just want her more able bodied - at the moment is 24hr care. I have to listen out when she's shuffling about in case she falls. I've already picked her up again since posting this thread.. 🤦🏼‍♀️

you need a proper assessment of her care needs.
the hospital should have arranged for this through discharge planning.
contact GP, request community occupational therapist, also continence service as she obviously needs pads.
you shouldn't really be trying to get her up when she falls; apart from hurting your back you could hurt her without realising.
careworkers are told to contact ambulance service if someone falls.

could you/she afford to pay a careworker for a couple of hours a day, say getting up and going to bed, until something else can be sorted out.
bluebird care agency have a good reputation.

is she getting the higher rate attendance allowance.
if she is of state pension age.
are you working, if not claim carer's allowance.

I've called the Dr & waiting for a call back. She's even worse today - she can't hold a cup of tea.
I've been medically retired due to ill health (arthritis/lupus/hypermobility) and I also have a slipped disc & sciatica so I'm hardly in good shape myself. I'm claiming carers allowance & between us, we're doing ok financially, but we certainly can't afford hundreds of pounds in carers a week, although something has got to give because we can't go on like this 🥺

I’m so sorry to read this. Have you been in touch with age uk or carers uk who may ge able to give you some advice and suggestions?
🌺🌺

As you live in the house and half own it you might be entitled to stay there and not have to sell it to pay for care, that's what happens with married couples but as your situation is different you'd have to get advice. You really need to find out as it sounds like your mum needs to be in a care home with a special sort of bed and all sorts of things to help her - hoists, wheel chair etc. You need to contact adult social services as others have said.

She needs to be properly assessed and have things put properly in place. You should also be able to have a life, it sounds like you have never had that chance and that is really sad OP.

It's social services you need to call for assessment for care. It's a mistake my Dad made - he kept calling the GP who couldn't help.

Look up Adult social services for your council and ring them tomorrow

Guys, thank you again for your advice & kind words. I rang my GP & was waiting to be triaged, then mum was getting a bit disoriented & lost some colour in her face, so I called for an ambulance. She's currently in hospital now. My dad is with her (he's as much use as an asthmatic ant..) but I needed to have a shower, walk the dogs & decompress..
The Dr rang me back at 1740 & I explained she was in hospital & he has basically reiterated what you've all been saying, that adult social care should be in place & she should be having regular physio. We'll see how this pans out.. thanks all for listening, it's appreciated 💕

@Tal45

As you live in the house and half own it you might be entitled to stay there and not have to sell it to pay for care, that's what happens with married couples but as your situation is different you'd have to get advice. You really need to find out as it sounds like your mum needs to be in a care home with a special sort of bed and all sorts of things to help her - hoists, wheel chair etc. You need to contact adult social services as others have said.

She needs to be properly assessed and have things put properly in place. You should also be able to have a life, it sounds like you have never had that chance and that is really sad OP.

No, I've never had my own life. I literally became a single mum to adult kids. I was the only one who could sort out bills & act like the grown up. Dad just walked off & left, although we kept in contact regularly, he was never helpful with the house & financial side of things. It was just easier if I took over the mortgage & both of them were happy for me to do that. I've spent the last 20yrs looking after them & working shifts full time that my personal life was non existent. I'm not married, no boyfriend & no friends locally. It's just a big bloody mess 🤦🏼‍♀️

While she is in the hospital they need to be testing for the reason to her majorly recurrent falls. Anything from low blood pressure to cardiac arrhythmia. Now is your chance OP to get the help you need by telling the Nursing staff that you want an urgent social Work referral as you cannot cope at home with her and any discharge would be "unsafe" and could lead to early and frequent readmissions to the hospital. The Hospital should have their own social work team who can link in with OT's and Physio's and their community counterparts. This should enable them to get a package of care in situ for when she is discharged. Hope it gets sorted soon! X

None of your savings will be included in any financial assessment, only your mothers.

I hope this situation now gets sorted out for you .
Speaking from experience , hospital /social services will want her off their hands asap , they are likely to pressure you into having her home and as things were .
You must stand your ground and refuse to have her home until vast improvements for you both are in place.
I would also ask for some respite care for her so that you can have a rest ,they may be able to place her in step down care for up to 6 weeks after hospital discharge.
I have been the unofficial carer /contact for 2 elderly relatives and i had my eyes opened as to how pushy social services can be.

If and when you have any meetings take someone with you as support ,the meetings often involve multiple people and it can become slightly intimidating /confusing.
Don't be walked on if they try to pressure you into a care package that is not going to work for you.
I would write notes about what your average week consists of, something to refer to .
I hope you get someone who listens and sees your domestic situation for what it really is .

It's not a case of 'might be able to stay there' if house is in joint names OP cannot be made to sell to pay care fees for mum. Even if she didn't half own it and had been living there for years caring for her mum it would likely be disregarded anyway.

OP, if you can't cope caring for her you have to be honest with all involved and say as much.

If as is likely, the hospital and/or social services push for you to have DM home before doing an assessment of need, and getting care in place; keep saying to them

"This is an unsafe discharge!"

Insist that social services get your views, as the carer, as part of the assessment of need - not in the presence of DM. Otherwise, whatever question they ask her about how she can manage getting meals, personal hygiene, etc; she might say (without asking you)

"My daughter can do it!"

This is music to their ears, as it lets them off the hook - when actually you need to keep saying that you cannot provide any care! You don't have to give a reason, but your own health problems are more than enough.

As OP is disabled herself (and possibly over 60 ?), the family home does not have to be sold to pay care fees, either.

Refuse to allow her to be discharged without SS putting a care package in place.

Tell them that you are absolutely not physically able to care for her, and releasing her without professional care will be putting her in danger.

@Intercity225

As OP is disabled herself (and possibly over 60 ?), the family home does not have to be sold to pay care fees, either.

I'm 45 🥺. Mum is 67 💕

She is still in hospital, I haven't heard anything yet. I'm going to crack on cleaning the house whilst I have free time on my hands! She was an absolute nightmare in hospital last night, kept fidgeting, needing a wee, being grumpy. Nurses were already 'done with her' at 8pm. God bless them!