Living in own home

[SeriouslyAgain]

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.

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.

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.

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

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

@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.

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?

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...

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...

Maybe it's time she was in a hone?

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

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

I was like this, I didn't go away for three years because I was prioritising my DM, and then I got cancer when there's no history of it in the family and I'm otherwise fit and healthy, I really think the stress of everything just contributed to it. Now I prioritise myself some of the time, my DM refuses to get carers but that's her responsibility, it's not my problem to fill all the gaps because of the choices she makes. I am supposed to be going away on a holiday early next year and the anxiety is constantly there about will anything happen to my DM to stop me going, but I also deserve to enjoy myself, as who knows what's going to happen to me (though I'm hopefully cured). Obviously, if something life-threatening happens, which it does reasonably frequently, I will change my plans, but I wont change major plans because her smoke alarm is beeping or a lightbulb needs changing when she could pay for somebody else to do those little things.

@SierraSapphire sorry to hear that, but glad to read you've made a recovery!

You are right, I guess we never know what is around the corner. I'm just at the start of this (long) journey, and I think I'd like to really get the right balance somehow. Dad will have a carer, in his own home, 24/7, and if I don't let go of some of the control, then I suppose I may as well be that carer!?

This could go on for many years I think? He's at the stage where moving is incredibly difficult but he potters about. He can't really go out at all, apart from the many medical appointments which I need to take him to. Will it slow down to a stage where he is in bed most of the time, or just sits in a chair in the day, and bed at night, ie doesn't go to the kitchen for meal times etc... I have no idea on the progression of being elderly.

I definitely don't want to be like this myself one day :(

@nervesonnerves It's impossible to know how it's going to go I think. My DM has nearly died many times over the last eight or so years, although we've had a period of no crisis for a while. I make it a rule in general that I don't take her to anything that somebody else could take her to, although I did take her for a routine doctors appointment yesterday, she could actually get a taxi or a volunteer driver there. I try to prioritise taking her to things that need my input because it needs my memory of the past or she's going to be told something that's important to remember. I'm self-employed so my day is flexible, although my business is in chaos after Covid and cancer, I do wonder whether if I had a proper job that she would expect things of me less. It's horrible, wanting the best for them but also needing to set boundaries around your time. I keep telling her that if she had carers to do those things then I would be able to spend higher quality time with her, but that doesn't seem to make any difference.

I’m so sorry to read of all of you in this situation.
I’m truly scared of my kids feeling they’ve got to devote their lives to looking after me or DH like this one day.
Maybe an unpopular opinion but sometimes medical advancement has done the very old (and their carers) no favours.

I feel that my DM still has a reasonable quality of life, although she is pretty much restricted to her own home, I just feel she'd have a better quality of life still (and I wouldn't have my life disrupted so much) if she was in one of those retirement complexes where she had her own flat or bungalow, but there were other older people around her as well, someone to call for emergencies, and a communal area to hang out in. That's what I'm planning before I get too frail to move, if I get to that age!

@SierraSapphire I am in a similar situation, working p/t from home, luckily, as this enables me to help, but yes, as you say, if we had 'proper jobs' the expectations may be different.

I'm just trying to work out which appointments it is necessary for me to attend and which it isn't. He has started to like me to go with him, I think for my listening, and my questions, and tbh it is easier because I can then get clarity on the situation. He had a small procedure last week and I was unable to go and the basics hadn't been understood and now we are having to go back to square one. Had I been there in the first place, I am pretty sure things would have gone more smoothly.

However, I am letting the carer go with him to the routine pacemaker appointment today.

I think I need a list of the appointments and it is frustrating that the times are just given to him, and he then tells me,rather than me being the one to coordinate that with my own diary. Perhaps I need to step in a little bit there?

I find it hard because if I am P/T wfh, and my Dad has an appointment, then I feel selfish to let the carer go rather than me go with. I hope that this is something I'll struggle with initially but be able to work out my boundaries and duties and then it becomes normal?

Sending love and strength to all of you! x

@nervesonnerves I am staggered at the rate we need to call plumbers, electricians etc etc etc Once you’re old, you need tradespeople for things you would normally do yourself. I’m hopeless on ladders and trying to works out what to do about lightbulbs once DH is no longer around.

I can't manage the constant last minute things, and feel like I won't ever be able to make plans again for myself? Be very robust in your responses. Blocked toilet needs sorting now, but perhaps the light bulb could wait till tomorrow?

Is your dad getting Attendance Allowance? It’s not means tested

@This could go on for many years I think? He's at the stage where moving is incredibly difficult but he potters about. He can't really go out at all, apart from the many medical appointments which I need to take him to. Will it slow down to a stage where he is in bed most of the time, or just sits in a chair in the day, and bed at night, ie doesn't go to the kitchen for meal times etc... I have no idea on the progression of being elderly.@ Various from person to person. My dad is bedbound and has been for a couple of years. He’s only a few years older than David Attenborough and the former Queen.

I think I need a list of the appointments Write a letter for him to sign and give it to his GP, giving permission for you to have access to his medical records. Change his contact number to your mobile so you get all the appointment reminders.

Then don’t do anything that can be outsourced. There’s no need for you to be at a scan; you do need to be at the appointment where the consultant explains the results of the scan.

Oh this thread is a balm, I'm so there with you.

We also are paying for live-in care, through an agency, at an eye-watering cost and yet I find myself every day having to do something (from the little stuff like sort out the grocery order, order continence products, fix something that's broken, chase OT, research treatments to the bigger stuff like accompanying her to appointments, going and visiting care homes that she's never going to go to).

And although it might only be 10 minutes here and there but it all adds up and distracts me from work and stops me progressing just at the point i should be throwing myself back into work after years of various derailments. And as you say I'm not even her day-to-day carer and despite the cost I'm beyond grateful that someone else is looking after.

And the expense on top of the cost of carers. My mother was adamant that she wanted to go into a care home so we didn't want to buy a new TV, new mattress, an expensive ramp, but as soon as my dad died, she decided that she wasn't in such a hurry after all. And we just don't know how much to invest in the house but if we don't she tells everyone that her children are too mean to buy her a new TV.

The carers seem to love spending money too - only the most expensive Dyson was suitable.

The house is in a very sought-after family orientated bit of an expensive city yet my mother is convinced that every old person addition 'will add value' - as if the 30 something tech-bro who buys it will be paying a premium for the lift, the grab rails, the adapted toilet etc, etc.

12 years of living like this?!

I do understand that the live-in carers are there to look after your mum, not the house. But I do think it's unreasonable of them to keep calling you about things like blocked toilets (that THEY have blocked) and expect you to come running. Is there only one loo in the house? If not, can't they manage using just the other one until the plumber or handyman can come?
Can they not manage with a table lamp for a day or two if a lightbulb goes, until the handyman can come, instead of expecting you to dash over? It honestly sounds like you're at the carers' beck and call. I'm guessing they're told by the agency not to do household tasks, but this seems extreme. Why are they calling you in a panic when the dishwasher displays an error message?

Can the routine maintenance like cleaning out dishwasher filters be scheduled in for the handyman to do?

My mum is very elderly and we are lucky that we are in a position to keep her at home. We can do it because we are a big family, and most of us chip in, but it is still hard. She does not have dementia though, i think that once that sets in a care home is almost inevitable. I really admire you for keeping her home all this time, but imo after 12 years of this and your mum's health and home deteriorating, it might be time. It sounds like you/she can afford a good one, and when you know she is safe and being cared for without the stress of taking care of the house you can visit her often and be her daughter again, instead of her landlord/carer.

And although it might only be 10 minutes here and there but it all adds up and distracts me from work and stops me progressing just at the point i should be throwing myself back into work after years of various derailments

This is how I feel, my mum sees it as half an hour out of work, but what I'm losing is the ability to focus and develop the business after my own derailments. I'm mid 50s, and it's a difficult time around employment, after being self-employed for so long, I'm possibly unemployable even if I wanted a job, which I don't, I love my business! And there's no way that I can do a job at the level I should be working with my mum's needs, but the few hours here and there, and the constant worry that if I organise something it will be cancelled are massively affecting me and I am worried the whole business might collapse. Any conversation with my mum gets me absolutely nowhere.

Valley, I'm glad it's helping - it's certainly helping me. Yr comment abt the grab rails etc made me laugh. And yes, carers have really expensive tastes!!
Fictional (and others): a good question re the reasonableness of the demands. I am absolutely at the carers' beck and call.
Carers (especially good ones) are like gold dust and whilst I have no control over (among many things (😂)) their issues with the agency, their issues with the cover or extra carers, their issues with their families, whether they're trained in all the stuff they need like hoists or end-of-life)... all the things that could make them leave...the one thing I can control is trying to make this job as easy and nice and pleasant as possible so that they stay as long as possible.
I've had a carer walk out because she considered the fridge too noisy and didn't like the lady who does my mum's nails. I kid you not. To be fair, she was (in MN terms) 'batshit crazy' so probably not much of a loss, but.... 😂

it is actually so nice to be reading comments from others going through the same (although of course each one is different). None of my friends are going through this, so this really helps not make it feel so scary and bewildering.

Yes, @SeriouslyAgain I know what you mean about just wanting the carer to be happy and not leave. I am super nice to her, and I'm sure I pay her over the odds, just so she'll be happy.

Sierra and nerves, the whole thing about time and being able to concentrate on job/family is really tricky.
Definitely it's good to have boundaries BUT I think you have to be really flexible about that because things get out of control very quickly unless you're on top of it and that actually leads to more time being spent sorting it. Especially as the care needs start changing very rapidly towards the end (although as I'm finding, the end can be very very slow in coming).
However many forms are filled by carers/agencies/gp/social care, no one can as efficiently sort things out as I can, because I'm the only one who genuinely knows mum and genuinely cares, rather than 'being scared of being sued'.
Literally, no easy answers.

There's a lot of management doing to keep carers happy. We had one who'd ring me every day to complain about the agency and I'd spend, no exaggeration, up 30 minutes having to tell her how much we valued her, how wonderful she was, how her happiness (not that of my parents') was our priority. She was the sort of person who'd ring you up and you'd say 'hi Jane' and before saying anything, she just give out an enormous sigh.

She finally had a terminal bust-up with the agency, which was a great relief. And then I read in the GP's notes that she'd told them that she was leaving because she felt 'undersupported by the agency and the family'. Hours of my life I gave that bloody woman.

Seriouslyagain your remark about the situation always changing also resonates. I always joke that it's a fast moving situation with slow moving people. It adds to my reluctance to keep spending money on the house when she might not need it (I speak as someone who greenlit my father's private cataract operation the results of which he only enjoyed for two months).