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Elderly parents

Sandwich carer with toddler

19 replies

purpledinosaurs · 30/04/2023 23:29

I'm not sure what the purpose of this is, maybe just to find anyone else in the same position as it feels very lonely at the minute, especially when I hear from others in RL who "went through the same thing" except they really didn't at all as they were all older than me, had older "kids" (teens+, no SEN or anything like that) and in some cases didn't work full time either.

I'm in a bit of an unusual situation having a 2yo and a 90 year old to care for while also working full time. The 2yo is at nursery/in laws while I'm at work but I look after her (with DH) in evenings and weekends. Even on a good day we're both shattered after working and don't get time to ourselves - we haven't managed to get a good night out (e.g. food and a film) since before she was born. Up until recently I've had to care for some things for my mum including running her admin, shopping, things around the house, cleaning, etc. and although it's been stressful I've managed.

Lately however she keeps having bouts of back pain which means she can't do a lot of things herself and I need to up the care on top of the usual care for her and having my own 2yo to care for, as well as trying to keep on top of my own house. I can't cope with it all and I'm more than happy to have carers take on some of the burden but I'm struggling with finding help as her issues are intermittant. We've managed to get social care in twice a day during the most recent bout of back pain as she ended up having to go to A&E so they referred her for emergency care. Normally (when she has had the back trouble in the past) we get told she'd need an assessment which could take upto 4 weeks but we know she'd be passed it by then so the assessment would probably show she didn't need the help, and in the meantime I'd be doing the extra care which is causing me a lot of stress.

So I'm not sure what to do. Normally she's pretty independent so doesn't need to be in a care home, but when she has these back issues she needs a lot of care short notice that I can't really provide. Plus even when she has help it's not uncommon for her to have an accident causing a mess that I then have to travel and clean up at 2am (the most recent being diarrhoea all over the bathroom floor), which is really difficult as I'm already so tired from caring for the 2yo and working, especially if the 2yo is also going through a sleep regression. I feel like I need a service where I can just phone them whenever and get a carer for an hour ad hoc to deal with things like this to take it off my plate so I return to just handling the 'regular' duties whether she's having a good day or bad.

I keep getting advice to just quit work, but that's the only place I feel myself and feel like my mental health would suffer even more without that bit of respite from caring roles. Plus I wouldn't be able to afford childcare so would have the same issues anyway, as I wouldn't be able to care for both at the same time, and we would have less money for our own bills even after childcare costs are removed. Her moving in with us isn't an option as we don't have space and she can't handle stairs, and we don't have the money to move or adapt our house.

I should also mention that my DH is amazing and helps out a lot, but there's only so much we can both do and we're both just burned out with everything, and nobody offers to give us a break - in fact on bank holidays they cancel childcare even though they're all retired, which I get but it's just frustrating as they know how much pressure we're under but we just can't seem to get a break. Even on birthdays and anniversaries we can't go out together without the 2yo as nobody will look after her. We've sometimes had offers but they end up cancelling.

Sorry for the very long post but I'm in a really bad place at the minute and I'm struggling to see a GP as it's so hard to get an appointment now. I go through the form online but when the GP calls (no indication of day or time) I've always been in meetings at work, in the shower, etc. so miss the call and they don't call back, they just say I need to start the process again. Since my mum has had her latest bout of back pain (plus how stressful I'm finding contacting the GP now) it's taken a bit of a back seat while I deal with the latest situation.

TL;DR; Work full time while looking after a 2yo and 90yo and struggling - anyone else in the same boat, and is there such a thing as 'ad hoc care' where I can call any time (e.g. 2am) and they'll send someone out for an extra care visit?

OP posts:
WanderleyWagon · 30/04/2023 23:57

I'm not in your situation (older parent struggling a bit, but no children) but didn't want to read and run. I don't know how to deal with the ad hoc care needs, but does your mother get Attendance Allowance? Could it pay for at least someone to do her cleaning and shopping, which would mean that somebody is popping in regularly?

kweeble · 01/05/2023 00:04

I do think your mum should look to move to a care home - you need to step right back and it would then become the obvious solution.
Once your mum is in a home you can visit her or take her out without the stress of being her carer.
Your child, family life and health matter more than your mum’s desire to stay at home whatever the cost to your wellbeing.

SleepingStandingUp · 01/05/2023 00:12

Normally (when she has had the back trouble in the past) we get told she'd need an assessment which could take upto 4 weeks but we know she'd be passed it by then so the assessment would probably show she didn't need the help
So has she had the assessment? Because even tho the pain is intermittent, the cause isn't necessarily. I have, for example, bulging of a disc. Sometimes I'm perfectly fine, sometimes I have back ache cured with rest and low level drugs and sometimes I've been unable to move and in every drug legally available. The scan of my back shows the issue regardless.
Get the scans, look at what it shows and make some decisions from there. No idea if a diagnosis will make it earlier to get continual care albeit limited to a few hours, but it's worth it.

And age with pp, it's time to start taking about care homes or supported living at least. The amount of care she needs isn't going to decrease.

And make sure DH isn't"helping you out" but is actually doing his fair share of looking after his house and his child and his wife

Imnotdrinkingmerlot · 01/05/2023 00:32

Not quite the same position as you, but also sandwiched between caring for primary age dc and elderly mum with dementia. I work pt, but no other family help.

I've found it hard tbh. Lots of feeling I'm not doing enough in any department. Care agencies in my experience need a set routine, but does your mum have cash to fund regular visits even when she's better? They can do light housework and social visits, which would help take some pressure off you. Is your mum getting attendance allowance?

It's emotionally hard I know, seeing lots of other grandparents be hands on, enjoying dc and helping out. I feel sad knowing my dc will only really remember my dm as old and I'll.

EmotionalBlackmail · 01/05/2023 09:25

My child is a little older (infant school age) but I have a full time job and two older relatives so am sandwiched. One is late 70s and the other early 90s. One is in a care home with POA in place. The other downsized but living independently and driving me mad as she thinks I shouldn't be working but looking after her! She knows I'm the main breadwinner...

BUT I have boundaries and don't get too involved. My priority is my child, job and DH and I can't just drop everything and go running to pick up the pieces. Take a step back and think about what would happen if you had flu or were on holiday overseas - what would happen then? Someone else would deal with it. I had a period when I couldn't drive and that was actually very useful as DM had an A and E admission at that time and nothing I could do!

I use my phone settings (it's called Do Not Disturb) to make sure I can't be disturbed whilst I'm at work and again at night. So I can basically only be got hold of over breakfast time and then for about four hours in the evening.

MereDintofPandiculation · 01/05/2023 10:00

Do not give up work. Whoever suggested that didn’t have your interests at heart

EmotionalBlackmail · 01/05/2023 10:35

Re Do Not Disturb - it's set so certain numbers can get through, so DH and DD's school can. I'm not actually responsible for the elderly relatives, whereas I am for my child.

The elderly ones are responsible for themselves and it's up to them to arrange care if they can't manage something. One has dementia so POA in place and she's in a care home. Sometimes it takes a crisis to convince them they do need to go into a care home and you just have to let that happen!

EmmaEmerald · 01/05/2023 11:53

MereDintofPandiculation · 01/05/2023 10:00

Do not give up work. Whoever suggested that didn’t have your interests at heart


why are you currently doing your mum's shopping and cleaning?

I looked for an emergency service like what you describe, I had no luck, but tbh there's not a service that would apply to your bathroom example. I think those are things we're stuck with, in the absence of 24 hour care. but the regular predictable things can be outsourced. Have you applied for AA? Don't let talk of long forms put you off. Yes, it's a longish form, but it's not the nightmare I thought it was from what I heard.

have you contacted Adult Social Care?

Belindabelle · 01/05/2023 13:29

Taking your mum out of the equation for the moment I don’t think your lack of support re your daughter is unusual. In my experience life whilst working full time with a 2 year old can be tough.

Not having family to babysit is the norm in my experience so if you want a meal and a film with your DH you will have to pay for babysitting. You may find
once your daughter goes to school there will be other parents willing to form a babysitting swap club. Your in-laws probably feel that they do their bit by looking after your daughter whilst you and their son work. If they didn’t do weekday childcare they may be willing to do more on evenings and at weekends. Hopefully when your daughter goes to school and they are not so involved in childcare they will be more willing and reliable to facilitate you and DH having a social life.

So fingers crossed things should improve on that front when your daughter starts school in 2-3 years time. Until then, unless you pay for someone, there is not much you can do. You do have my sympathy on this because trying to keep your relationship ‘alive’ is especially important when other areas of your life are difficult. I know that probably sounds like ages away but the time will pass. Don’t waste your energy feeling resentful that people won’t babysit. It won’t change the situation but will use up even more of your limited energy reserves. However do feel free to come on here and offload because it sucks.

I will post about the situation with your mother later.

EmotionalBlackmail · 01/05/2023 15:07

Could you both take an occasional annual leave day whilst your kid is in nursery to spend some time together? We have no family support either (no grandparents to do childcare as they're either dead or infirm so our only option was nursery) so we didn't have evenings out but we did enjoy some days out and peaceful lunches by taking annual leave whilst DD was in nursery which made a big difference.

There's a big temptation to become a martyr and spend the whole time running around after other people - my Mum was highly critical of us having childfree days out whilst DD was in nursery - but you have to take care of yourself in order to take care of others. I stopped telling my Mum we were doing that in the end, as she just kept guilt-tripping me.

It gets easier as kids get bigger and you can leave them places eg kids' parties suddenly allows you two hours of free time! Mine will do her first overnight away from us soon thanks to Brownies!

PermanentTemporary · 01/05/2023 15:31

I have to say, what does your Mum say about these horrible episodes of hers? What does her GP say? How is she ok with 'needing more help' at this level from the mother of a toddler??

I'm struck that you're not only dealing with incredibly difficult levels of personal care for your mum (cleaning up other adults' diarrhoea is WAY past what most of us would be willing to do) but you're also grappling with all the mental load of trying to work out what care she needs and where to get it.

On top of that, you're the mother of a preschooler.

On top of THAT, you're working full time.

It seems to me that you're from families who consider family care to be the only legitimate source, but that only works at all when none of the women are earning and there are lots and lots of non working women available. Even then it only works on the surface - usually some women got landed literally with the shit and others didn't. Most families aren't set up like this anymore.

So. Your 2 year old, your dh and your job are the three things you definitely have responsibility for. Your mum needs to be on the list for SS assessment and call her GP and emergency social services lines for help when things go pear-shaped. I wonder if she might benefit from respite care at these times, but she needs to find that out, not you. All the more so, if in fact she is no longer capable of organising these things.

2bazookas · 01/05/2023 15:46

You've got far too much on your plate. You are not invincible; you must protect your own physical and emotional health.

Normally she's pretty independent so doesn't need to be in a care home, but when she has these back issues she needs a lot of care short notice that I can't really provide. Plus even when she has help it's not uncommon for her to have an accident causing a mess that I then have to travel and clean up at 2am

I'm sorry, but you have to tell yourself, and her, that you can no longer do it. When things have reached that extreme level of need, Mother can no longer decide she doesnt want residential care. That;s the only place where she'll get the kind of 24/7 back up care she needs.

Next time you get the longdistance accident call, you phone for her local ambulance on her behalf and she'll be admitted to hospital. From there. SW will pick it up.

Belindabelle · 01/05/2023 17:26

What did you, and more importantly your mother, think would happen when she was 90? Actually the age is irrelevant, she could be 70 and having these issues.

It isn’t realistic to expect to live alone without care indefinitely. It seems that your mothers plan was for you to provide that care. However you are not in a position to do this. Nor should you be. Ask her how she envisages the next few years playing out.

How long has your mother lived alone. Is she widowed. Did she provide care for her parents?

I have been through this twice, with my mother and then with MIL. In my experience older people can be very selfish. They seem to forget that we have other responsibilities. It was not unusual for their generation not to work after having children or work for pin money. As we know with the economy as it is our generation rarely have that choice now.

It sounds as though she has no signs of cognitive decline so sit down with her and explain you cannot realistically be expected to travel long distances to clean up her shit at 2am when you have a toddler to get to nursery and then do
a full day at work. Be honest, tell her you cannot cope and you are putting your child, husband, career and mental/physical health ahead of being her cleaner.

She needs another social services assessment. In the short term an alarm would be useful. She would wear a bracelet or a lanyard with a button that can be pressed in the event of a fall or a toileting incident. This is connected to a local carer who attends to assess the situation. They then call an ambulance or deal with the incident if they are able to assist. My mother and MIL both had this arranged via the GP I think. It is a 24 hour service and there is a charge.

However you, or rather your mother, is going to need a longer term plan. Daily carers, sheltered housing or residential homes are some options available. Whilst she still has agency it is her choice. That’s a good thing that she gets to decide as it is her life. But she doesn’t get to dictate what you do with your life.

EmmaEmerald · 01/05/2023 17:37

Belinda we've talked a lot about the emergency button on here but in most parts of the country it alerts someone close, there's no official service attached to it - i.e. a paid carer wouldn't come out.

obviously it's always worth checking what your area has but I think for most people, the button is to alert a call centre who ring an ambulance if needed, and/or allocated contacts.

Soontobe60 · 01/05/2023 17:49

You’re currently in what I’d call ‘twilight’ land. Your DM needs care, that’s only going to increase as she gets more infirm, your DC needs care, you have a full time job.
First of all, what does your Dh think about the amount of care you have to provide for your DM?
Are you an only child or do you have siblings that could be called on?
I’m afraid there isn’t a service that could be called on in the middle of the night in order to help your DM if she’s had an accident and needs cleaning.

I think you need to instigate a social services adult care needs assessment. They will visit your DM, look at her needs and come up with a plan for meeting those needs. Is it possible for her to afford a live in carer? SS won’t pay for one, if she needs more than 4 carer visits a day they’ll recommend residential care.

Limetreee · 01/05/2023 18:09

EmmaEmerald · Today 17:37
Belinda we've talked a lot about the emergency button on here but in most parts of the country it alerts someone close, there's no official service attached to it - i.e. a paid carer wouldn't come out. 

obviously it's always worth checking what your area has but I think for most people, the button is to alert a call centre who ring an ambulance if needed, and/or allocated contacts. Too true

PermanentTemporary · 01/05/2023 18:11

Something concrete- has her GP referred her to the continence service? Sounds like that needs doing.

purpledinosaurs · 01/05/2023 18:14

Wow, I didn’t expect so many messages so quickly! Thanks for the support, and thanks for the messages supporting me staying at work. It’s typically the in laws that keep trying to persuade DH to get me to become a SAHM. I don’t think they agree with us sending LO to nursery and tbh I don’t think they want to look after her for the couple of days a week they do. I get side comments (not directly) about it, like when she was going through one of her (typical for her age) sleep regression I got comments like ‘I think she’s missing her mum and that’s why she wants her mum during the night, because she’s not seeing her enough during the day, what with being at nursery all the time’.

We are trying to get some debts paid off so we can afford nursery full time and hopefully get more of our annual leave - at the minute most of it goes on covering childcare when the in laws cancel and any left over typically goes on doctor/hospital appointments for my mum (although I am planning to have a discussion with work about this and ask for more flexible hours so I don’t have to use annual leave).

To answer some of the questions/responses:

  • I’ve had a look at AA before but the questions sounded like she probably wouldn’t get it because on a typical day she’s usually independent enough. I’ll have a deeper look into it though, and see if there is anyone that can advise on it - it may be that there are things I can include that I might not have thought of.
  • coincidentally my mum called me today to say there’s a friend of a friend who’s started a cleaning business and she’d like to support them by having them clean for her. She’s always said no when I’ve suggested it to her, but I think because she feels like she’s doing this person a favour she’s more willing now. I didn’t argue about the past, I just happily jumped on it and said it sounded like a great idea, so at least that’s something off my plate 🙂
  • I don’t mind doing the shopping for her, especially now she doesn’t want to come with me anymore (too tiring for her these days) as it means I can do click and collect.
  • My mum doesn’t have any money as she lost it all to a conman (still refuses to believe he was one), so she’s living off her pension now. So she can’t afford regular social care privately but if SS agreed she needed the help then she’d get that funded by the council I think as she has no assets and doesn’t get much from her pension. I’ve requested to be there for her assessment at the end of this emergency care period so I’m hoping I can persuade them to continue coming at least once a day. I might be wrong, but I’m hoping it will be more straightforward (no need for assessments) to just increase visits than it is to get them in the first place.
  • My mum doesn’t have dementia or anything, but she’s a bit clueless with a lot of things as my dad always dealt with things and when he passed away I just started doing it as she was struggling to figure out how to deal with things like banks, insurance, etc. It doesn’t help that she’s a big technophobe and has only recently even started sending text messages, never mind anything else.
  • To answer what my mum says about these episodes, it’s a bit hard to say. Sometimes she will ask for help but other times she won’t and will tell me about it after the fact, but sounds very distressed about what’s happened and tells me how difficult it was. She’s never been one to tell me to do things or give me a hard time if I didn’t, but she somehow has a way of making me offer, I think because she sounds so distressed and helpless. But if I ask her about getting more help in then she’ll say she doesn’t it, and if I said what about if I wasn’t there, she’d say she’d manage (with some difficulty). I’ve had to stress multiple times the last few days that when social care is there, don’t try too hard as we don’t want them to think she doesn’t need the help and leave - it’s better to accept a bit of help and keep the service so it’s there when she does need it than lose it altogether, but she’s one of those people who doesn’t want to put others out, including social care staff where it’s their job.
  • My mum has been alone for about 15 years (widowed) but had a few years living with a conman during which we were estranged and she lost contact with most people. Before she got with him she did most things on her own but needed me mostly for banking stuff.
  • My mum was a near full time carer for her own mum but also tells me that she doesn’t want me to be like that, but also won’t ask anyone else for help either.
  • She already lives in sheltered housing so has a lanyard, pull cords, etc. but this just alerts the on call team (call centre) who then contact me or call an ambulance. I figured needing help to clean up after an incident wouldn’t really warrant an ambulance visit. Living here also means she can’t have a live on carer as it’s a single bedroom flat and she’s actually not allowed to have anyone stay overnight unless they use the communal guest room (which is chargeable, and obviously limited availability).

A couple of follow up questions for people:
  • some of you have mentioned hiring babysitters etc. for the evening - do they typically come to your house? In our case the few we’ve contacted have been put off by our big dog so they won’t come to the house to babysit. Not sure if this is typical or just the ones near us.
  • does anyone know if my mum loses the social care after 6 weeks would it be easier to get it started again next time or would we still have to go through the whole assessment again? If so, is there a way to get an emergency assessment done without having to go to A&E first?

I feel like it’s just an awkward time. At some point she’ll be bad enough that it will be obvious that she now needs regular social care visits all the time or residential care. Once she’s bad enough for residential care I know (or think, with my limited experience!) I can step back completely and my involvement will then be social and admin.

Sorry for another long post! 🙈
OP posts:
EmmaEmerald · 01/05/2023 22:21

OP I'm in a similar position - sometimes mum is fine and sometimes not, though, touch wood, no continence issues. I can't lie, if she was 90 with that problem my sister and I would urge 24 hour care.

It's good that cleaning is off the list.

Re AA, I do wonder if they are going to reject a 90 year old with back issues and continence issues? How is her mobility? I wrote a lot of stuff on the form that wasn't asked, I can't remember exactly what though.

It might be that being in assisted living knocks out the AA option, but really I think the issue we have is no one other than us in emergencies. The only answer there is care home. At least, that's the only answer I know of.

We rang round a lot of private carers and had one lady in who said she would come out in the night for that kind of thing and just charge her usual rate. 

It's not been tested though and I moved to be near mum - we got that lady's number when I didn't live near mum. Tbh I think it would be better for you and your mum if the LA would agree to fund a care home place for her. 

it's possibly on the cards for me to give up work and care for mum but it would only be for the lightest care. If she had major needs, it would be care home. I know the middling bit is really hard though.

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