Living in own home

I had actually come onto add to the Useful Things List rather than to carp about the carers... I was going to add what Meredint has already usefully put about the key safe. When we didn't have live-in carers, this was invaluable.

We have an 'important box' where any non-catalogue mail gets put - I just deal with it in a big batch rather than discussing each and every individual letter or cheque. It also saves having to look for it all.

Maybe I should now check out some sparkly dresses!

I've spend so long on different topics here, and sadly, this one it is quite depressing now. Sparkly dresses in S&B is much more fun! BUT you are all lovely and I think it is a really supportive place to be. Am glad I found this thread.

thank you @MereDintofPandiculation I will speak to Age UK.

We have a (reconditioned) stairlift, and not 1, not 2, but 3 wheelie aids to get around the house (similar to a zimmer frame but like a 3 wheel tripod thing, not sure the difference). Dad has one upstairs, and one down, and then a spare for 'going out'. The downstairs one can't be the going out one because it has a basket and tray fitted so it no longer folds up.

I'm just glad he can afford all this. What worries me is that I don't think I will be able to afford this, for myself one day.

@nervesonnerves I did look up attendance allowance last week, but the form put me off... I should give it a go shouldn't I? Yes, definitely. Talk to AgeUK - they can often help with filling the form in. It's good to have help from someone who knows the jargon - a retired social worker friend helped me. Main things to remember are 1) "A need met is still a need" - so think about all the work arounds and all the things you do for her, and how she would get on with no help 2) Put down everything wherever it's relevant even if you feel you're repeating yourself a lot. Pretend every section is being read by a different person!

People will tell you to fill it in as on the worst day ever - obviously you shouldn't do this, you should do something that is relevant to her everyday life, not something that happened once, 19 months ago. But if she has good days and bad days, then describe the bad days.

Somewhere on this board there's "preparation for old age list"

Have you fitted a key safe yet? Needed for letting carers in, and ambulances when you're not there.

Later on - if zimmer frame becomes necessary, remember to get one for downstairs and one for upstairs. Elderly person climbing stairs carrying zimmer is a recipe for accidents.

Downstairs wet room is useful if elderly person comes to be confined to downstairs. But a good wash at a basin is fine, as long as it's being done properly, so wet room expense might not be effective use of funds. Reconditioned stair lifts are good - they won't be more than 3 years old and are immaculate. A reconditioned stairlift costs costs between £1000 -£3000 less than 4 weeks of care home care.

And it's not that I don't think the money should be spent and what choice is there, but I keep thinking of the grandchildren and how their young adult lives would be transformed by what is being spent in a year - they could leave education without debts or put down deposits on property.

Oh gosh the carers are uber consumerists! They love spending other people's money - they enable my mother with dementia to shop from the many, many catalogues for elasticated trousers and cashmere that she receives. My parents were so thrifty when we growing up.

Absolutely hear you about the way that one carer will say x piece of equipment is essential and the next will say y. And it's not just the money, it's the crap that's coming in - we're supposed to be decluttering.

Along with new babies, it reminds me of the mission creep of spending on weddings. Oh well, if we're spending so much overall, then we might as well get the extra tier of cake/designer shoes/fancy car... And now of course any spending pales in comparison to the £££££££ cost of the carers.

@MereDintofPandiculation I did look up attendance allowance last week, but the form put me off... I should give it a go shouldn't I?

I mangaged the form for a monitored neck pendant alarm and that is being fitted this Friday.

Is there a checklist of things to do?

Grab rails, shower mats, perching stools, DONE.

Monitored alarm, being done.

Carer 24/7 sorted for next couple of weeks and interviewing another one on the weekend.

Need to check attendance allowance..
Get copies of POA for future need

(I have control of all finances currently as we added me to his bank account to make it simpler)

it feels like hoists etc are a way off

There are lists for babies, moving house, weddings, deaths etc. What about this? I am a list person.

Please feel free to add and edit my list and we can perhaps make it into something useful to any of us :)

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).

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.

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.

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.

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?

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.

@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.

@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

@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

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!

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.

@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.

@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 :(

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.