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Elderly parents
Original poster

Living in own home

109 replies

SeriouslyAgain · 02/12/2023 16:06

This is just going to be the bloody death of me. I'm very 'lucky' that we have enough money for 24 hour care at home for my mum.
But aside from the constant phone calls about mum, it's the constant bloody phone calls about the house.
Just been trying to unblock a toilet because god only knows what's being put down them. Mum doesn't even use the toilet because she's in pads. But about once a month one or other toilet is blocked.
And if it's not that, it's the toilet seat being broken, or a bulb needs changing or 'the fridge is making a funny noise' or the dishwasher isn't working or the radiators need bleeding. What in God's name do people do?! I hardly ever have these issues in my house, which is way smaller and with more people in it so everything is used way more.
But on and fucking on it goes. Backwards and bloody forwards, me, my husband, tradesmen (but of course getting one on a wkend is bloody difficult and painfully expensive). Aaaaaargh. Just so bloody sick of it. Especially when mum has allegedly been about to die for about a year so I'm backwards and forwards trying to manage that too. But really, trying to scoop shit out of a toilet does make me wonder how long I can cope with keeping mum at home.

OP posts:
RedHelenB · 05/12/2023 06:21

SeriouslyAgain · 02/12/2023 16:52

Thank you all. It's all fine really in the grand scheme of life. It's just that it's been 12 years of trying to keep mum at home and I'm very very tired 😩

Maybe it's time she was in a hone?

nervesonnerves · 05/12/2023 06:17

You definitely need to start an information hub! Thank you for the useful suggestions above. Really I do need to start to sort the house out (following losing Mum). She was a hoarder and tbh I don't know where to start. I feel like I will wait until neither of them are here, and then I can get a skip and empty the house.

10 years... I really feel for you! It is the uncertainty for me that feels the scariest. For example, I've been studying/learning a new skill for 2 years and I am very close to taking a big exam after which I will be qualified. However, I need about 10 days of intense lessons/study in order to pass. Now, after 2 years, I think I need to put these dreams on hold as I simply can't be 'unavailable' to dad for the better part of 10 days, and if I book a lesson and cancel last minute, there are high charges to pay.

It is also just wanting to be sure I'm doing the best for him. He thinks he is going to get better, and back to normal, but I think he is just deteriorating. He has been having a carer 2 nights/3 days per week, but now she says it needs to be 24/7 (she isn't available so it isn't a case of her seeking more work), and she is known to the family and well trusted. It is so daunting trying to arrange it all.

Thank heavens for Amazon and that they stock mobility aids / waterproof mattress covers etc etc.

I spoke to adult social services 4 weeks ago and he is on the waiting list for a formal assessment, but the list is v long. I'm very grateful that he can afford to pay privately for his care. I dread to think what the situation would be if he couldn't and I feel for those in that position.

How do you find the balance of having your own life and making appointments for yourself, with balancing being available to do what they need?

I feel like I won't ever be able to go away again!

Don't get me wrong, I absolutely love my Dad, and will do everything I can to make him comfortable and look after him, but I feel my life has turned around so much in the last few months and it isn't easy. Sorry to moan too...

Original poster
SeriouslyAgain · 04/12/2023 19:22

Oh nerves you're so right about the baby books 😂. And sorry abt Yr mum.
Do RTFT as there's some proper wise advice!
All I can usefully say is to try to stay ahead of things a bit. eg dishwasher filter: if not cleaned eventually there'll be an error code cos it won't drain. Cue panicked phonecall (or discovering 3 months later a load of manky dishes!) So I do it every few weeks.
Get gutters cleared every if they live near trees. Better than suddenly realising that there's 5 years worth of damp 🙄. Have spare batteries and light bulbs available. Occasionally go into rooms you don't need to in case there's some madness being hidden away, which can give you an indication of stuff going wrong eg if there's broken furniture or stained towels, has someone fallen heavily into something and then tried to hide the evidence?! Get the boiler serviced. And obv, flush the loos to check that they're not on the way to being blocked 😂
You won't be able to think of everything, but I wish someone had told me this about 10 years ago. I still don't do it all, but I'm learning!
Very best of luck. There's a wealth of advice here and please feel free to ask me specific questions too...

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nervesonnerves · 04/12/2023 18:47

I think I could have written this - sorry haven't RTFT, but honestly, since my Dad has been alone (my lovely Mum passed earlier this year), I am staggered at the rate we need to call plumbers, electricians etc etc etc. You're right - I don't do this in my own home - what on earth goes on in their houses! lol!

I'm really starting to struggle with the amount of time and energy this is taking. Not just the 'tradesmen' but we are trying to find full time care now, and then there are the hospital appointments etc.

Am I missing something??

There are books and stacks of information of what to do when babies are born, but dealing with elderly parents feels like a minefield!

I can't manage the constant last minute things, and feel like I won't ever be able to make plans again for myself?

Original poster
SeriouslyAgain · 04/12/2023 18:40

@Lifeinlists (and anyone in the future making the At home v Care home decision who finds this thread)
I really hope I didn't make it sound as tho I think care at home is better than care homes. If I did please forgive me (have I said before that I'm very very tired? 😂). For specific reasons to do with my mum's background and personality, it's on balance better for her (tho maybe not for much longer). BUT 1. The best carer we had, had worked at a care home for years and 2. we have had a few really dreadful ones - and that means elderly parent at the mercy of that one person, without any of the daily checks and balances you'd get from being in a care home.
The whole thing is incredibly difficult and there is literally no right answer. Just a constant muddling through and hoping for the best.

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Original poster
SeriouslyAgain · 04/12/2023 14:54

Having said all that, I think I'll get myself ready to start looking at care homes in the new year.
It's so helpful to be able to 'talk' things through with people who actually know. Thk you all again

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Original poster
SeriouslyAgain · 04/12/2023 14:50

Thank you for the wise words.
Re the care, it's 24 hour live in. My mum is mollycoddled to the endth degree 😂. I don't think it would be better in a care home (for her... It would be for me 😂).
Last time she woke up from being at death's door, she demanded salmon and wine and it was sorted within an hour. Her life is so crap, and food is really now her only pleasure. That's the kind of small thing which keeps me going.
I think she does know she's at home, at least sometimes. But yes I think that does change the balance a bit.
Funnelfan, oh I get you re the heating! Sympathies back! It's so hard

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Lifeinlists · 04/12/2023 11:51

olderbutwiser · 04/12/2023 11:35

With the greatest respect, does your mum even know she is still at home? And before her dementia set in is this how she would want your live to be as her carer?

I would strongly recommend giving respite home care a go if you can. I can't believe she would want you scooping her expensive carers' shit out of her loo in your spare time.

Edited

I agree with this. You're running yourself into the ground, facing countless obstacles both physical and emotional but you really need to ask yourself why.

Your mother would probably get a better standard of care in a good nursing home. They do exist though finding them requires time and leg work but very worth it if you can find a suitable one. Trying respite care sounds like a good first step. If that's not totally to yours and her liking, have a wider look.

I never imagined my mum in a nursing home but there was no choice in the end and, after much practical research (!) we found an excellent one. That removed a great deal of stress all round.

olderbutwiser · 04/12/2023 11:35

With the greatest respect, does your mum even know she is still at home? And before her dementia set in is this how she would want your live to be as her carer?

I would strongly recommend giving respite home care a go if you can. I can't believe she would want you scooping her expensive carers' shit out of her loo in your spare time.

funnelfan · 04/12/2023 11:33

My sympathy. My mum is at home too and yes the house maintenance on top of mums care is a drain. The house was always immaculate when mum and dad were in full health, it’s quite sad to see. Now I’m nursing through a number of minor issues in the hope they stay minor and don’t turn major, and then the house will eventually be sold as a doer-upper. I’m not close enough to pop over if there’s an emergency.

it also doesn’t help when mum fiddles with things and then denies it/has no memory of it. Last week it was the heating, and she twiddled the clock so it was going off during the day and on at night and then she complained it was cold.

Original poster
SeriouslyAgain · 03/12/2023 11:20

I've thought about some kind of property management, but it's tricky. There are maintenance companies that I could probably use if I could definitely trust the people going in and could afford the eye-watering fees! (£150 for an 18 minute weekend call-out 😭 was the latest one).
I think Im really hard-hearted about triaging, but recently the ambulance-calling and vast-pooing have both required a fairly swift response!
Thank you so much to everyone for replying. Yesterday afternoon I was crying about it. But I'm already back to sort of seeing the funny side, and that's partly because I was able to vent and people on here were nice to me!
THANK YOU

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MereDintofPandiculation · 03/12/2023 09:57

@SeriouslyAgain I wonder whether you can get a “property manager” to deal with repairs and workmen? Property management firm or lettings department of an estate agent might be a place to look.

Secondly, be a bit more robust in triaging events. A bit more “I’ll make sure the handyman has it top if his list when he comes round on Wednesday”, a bit less “I’ll be with you in 10 minutes to change a bulb”. And let your phone go to answer phone for at least an hour a day when you relax.

MereDintofPandiculation · 03/12/2023 09:46

@FinghateXmasThisYr Accidents happen whatever the setting. You gave your Dad some quality of life, remember that. It doesn't do to go into “what ifs”. It would have been torture to him to put him in a care home when he so strongly didn’t want to . Once you get old, quality of life is more important than amount of life. And that you gave him.

Original poster
SeriouslyAgain · 02/12/2023 20:15

Mum's got fairly advanced dementia, among other things. She hated carers when it first got to that but I think she's kind of got used to it now. The care agency are super-posh and eye-wateringly expensive and I think the carers are better than I expected. But variable!
I wonder about getting a respite break in a care home... Might build myself up to looking at it in the new year.

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FatCatatPaddingtonStation · 02/12/2023 20:03

If your mum is considered end of life, she may be eligible for fast track continuing health care. This would mean the NHS would have to have a care co ordinator for her, in order to plan her needs and would cover both her health care and her social needs.

it is very difficult and I feel for you. House issues aside, do you feel confident in the quality of care they are providing to your mum. Is she capacious and able to tell you her experiences of the care?

Finally, would respite be an option if not CHC? Our LA will provide up to 8 weeks respite a year, and care agencies should accept planned respite breaks. Two weeks may enable you to get some maintenance tasks done. And if your mum settles, you may consider it a better option for the longer term?

Just some thoughts….I am an adult care SW.

You are clearly doing a marvellous job, and you are still a carer even though not providing the physical care. It is hugely draining and clearly, it has been ongoing for you for many years. You should feel very proud of yourself.

Best of luck.

Original poster
SeriouslyAgain · 02/12/2023 18:20

Sierra, can't begin to imagine cancer on top of everything else... That really does put my poo-scooping into perspective! Hope things are better now

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Original poster
SeriouslyAgain · 02/12/2023 17:48

Still, small mercies, I do have Power of Attorney for Health and Welfare so at least I have some control over the major life and death decisions to make sure mum's wishes are respected.
I'm such an expert now on elderly care I think I should start some kind of information hub 😂

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Original poster
SeriouslyAgain · 02/12/2023 17:46

Thank you all again (and sorry for your loss Fingate - for what it's worth, which is not much, I think that your dad being in his own home was absolutely the right thing)
I'm not even her carer. She has live-in care. But somehow I still end up there 3 times a week. I literally have no idea how some posters deal with doing the actual caring. If I had to change mum's nappies too, I think I would just crumble into a pile of dust.
As it is, I'm a mixture of handyman, housekeeper, counsellor to the carers, gp/district nurse liaison, whilst trying to stop the constant calling of ambulances which my poor mum doesn't want because the last place she wants to die is on a geriatric ward.
Love peace, thank you yes she has just been put on some palliative pathway but within hours made a full recovery 😂

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SierraSapphire · 02/12/2023 17:21

Sympathies, my 90-year-old DM is determined to stay in her own home, and whilst she doesn't need as much care as yours, it's the unpredictability of what's going happen and being called away, and needing to deal with crises when you've got your own plans to make and your own life to lead. I was still having to deal with her crises whilst going through cancer treatment (I'm not quite sure what I need to do to be the person most in need of support in my family!) We have had conversations at the hospital many times about her not being expected to live, but she always bounces back, which is obviously great, but she's so unrealistic about the pressure it puts me under. If she can't continue to live in the house without constant involvement from you, maybe it isn't sustainable any more.

Lovepeaceunderstanding · 02/12/2023 16:57

Have you registered as a career with your GP? When I did that I was introduced to several helpful agencies. Is your mum under the care of an hospice? She doesn’t need to be imminently about to die to be cared for by a hospice and she can still stay in her own home. Speak to your GP about this. The hospice nurse was so helpful to me and managed to get NHS continuing healthcare for my dad which meant his live in carer was completely funded. He lived with me which I suppose may have made my life a bit easier in some respects but I needed to get away sometimes. I had a free carer from Crossroads care who came in for 3 hours a week to give me a break. Have you got siblings who could take some of the load now and again?
You must try and I know it’s hard to make sure your role is your mother’s daughter not her carer, the time you have with her now is limited and you clearly love her so make sure you have some nice memories made.
There is help out there but you may have to fight for it. Good luck!

FinghateXmasThisYr · 02/12/2023 16:56

I feel your pain op, I worried about my df recently. He is/was 71 & went home after a long stay in hospital, he had a bad infection. He was found after lying in a state that is too painful to go into for acouple of days. Miraculously he survived but ended up confused with an acceleration in dementia we didn't even know he had. Cue 4 care visits a day into his warden accommodation, he complained that somebody was always there so this was decreased to 3 visits. The carers did an amazing job doing what they could, unfortunately my dads needs were such that he should have been in a home.
The carers provided meals, drinks for my dad which unbeknown to us he hadn't been having much of. They washed up & gave him his meds, made sure he went to the toilet, got him up in the morning. He went himself so no pads/pants like he had when in hospital.
I felt reassured he was okay because carers were with him, the hospital had advised he could home with a care package. I spoke to him, and his speech was a lot better, his confusion less, and we had a good conversation. He had a loss of appetite and wanted to sleep. One day, a carer went in, and my dad had got tangled & stuck in this bedsheets. It was terrible. He was due social care to come in and assess how he was doing, only he died a month later after the hospital discharge through UTI & consequent sepsis. I wonder if a care home would have made a difference? He wanted to to home so badly, I really think he would have died in one of those not much later, he would have been devastated and already had no quality of life just sitting in his living room staring at a wall.
Now I have to face Christmas without my beautiful dad, and it hurts like hell.

Original poster
SeriouslyAgain · 02/12/2023 16:52

Thank you all. It's all fine really in the grand scheme of life. It's just that it's been 12 years of trying to keep mum at home and I'm very very tired 😩

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Original poster
SeriouslyAgain · 02/12/2023 16:50

Re the handyman thing, it's just that anything that isn't easily sorted is always ALWAYS at the week end. And the care cost so much + heating and all the other bills, that even though it's a drop in the ocean I feel I have to try to do a lot of the stuff myself. + I've got to be as helpful as possible for the carers and today, no available emergency plumbers even though I was so at my wits end that I was willing to pay the £120 call out charge. It's just impossible to run her life and house and my life and house without being driven mad.

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sgvibes · 02/12/2023 16:45

Could you get a recommendation for a local handyman who could do most minor jobs?

Original poster
SeriouslyAgain · 02/12/2023 16:41

Yes it's the electrics that I'm worried about. Doing all the stuff I do is getting excruciating but obviously I don't really mind (as long as I can vent!) but if mum doesn't die soon, the house will 'die' before she does and I won't be able to keep her there. Constant worry.

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