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.

@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 :)

Oh the hours I've spent listening to carers' woes! I feel your pain!
And the money...the bills to keep the house at tropical temperatures aside, the amount of equipment I've bought (or rented - even that's horrifying!) over the years that's had about a month's use... Or one carer demands it, then leaves, and the next carer doesn't like it... SaraStedy and ETAC I'm looking at u (that's a very niche joke 😂)

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.

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.

@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.

@Valleyofthedollymix .... And once the parent has bought the catalogue-cashmere, the carer who helped her buy it leaves, and the next carer washes it at 90 degrees 😂. Oh the sweaters which could have been used to dress up tiny teddy bears 😂

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.

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.

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!

At some point last week there was a thread on Style and Beauty about foundation for ageing skin.
I'll be looking for that while you all find sparkly dresses!

that sounds a good thread too... I'm guessing with elderly parents we must be similar in age.

I use (& v happy with) a Charlotte tilbury foundation, also the erborian creams, and a foundation I found online in lockdown by il makiage.

I need to broach the subject today of asking Dad what appointments are coming up / need to be made in order that I can liaise with consultant secretaries etc to make appointments to suit my diary too! x

Ooh thank you for that - I'll look!
Hope the diarising went well.

What is the big concern with going into a care home? They're [mostly] not bad places and it removes a whole load of this stress.

One of mine chose to move into a residential one before needing nursing care - she'd got frail, was finding it difficult to manage at home and was very frightened about security, bulbs going, house maintenance, shopping etc. She'd got to the stage of getting freezer meals delivered to microwave and couldn't really go out on her own so it wasn't like she was getting much enjoyment from being at home.

The home she chose was amazing and she got several years of really enjoyable living there before her condition deteriorated. They had lovely food, obviously all maintenance and shopping taken care of. Hairdresser visited weekly. People to take them to appointments (charged for). Activities every day which she enjoyed whereas she'd got very isolated at home.

I agree Emotional, there's so much unnecessary stigma around care homes. Even the way people talk about children 'putting' their parents in a home as if they have no agency of their own. I think my mother will go into a home eventually and it will be a relief, but for the moment things are working, she still has lots of friends loyally visiting and it's only recently that my father died.

She lives in a lovely family house that should be filled with people rather than an immobile octogenarian and a carer.

I also agree with both of you. My Dad is now at home, with his carer. All his recent arrangements have been cancelled. If he was in a home (& he could afford a fairly nice one I suspect), then I actually think on his 'good days' he would quite enjoy it.

He is an intelligent man, and although it is very early days as we only lost my Mum earlier this year, he was in the past a real ladies' man, and I think he would enjoy the chat and company in a home. He has a lot of stories to tell and is an interesting man.

I think he, understandably, views it as a total loss of independence and also privacy. I guess it is easy for us to say that these places can be very nice, supportive, and give them some very enjoyable time, but if I think about myself, living at home, alone, peace and quiet, and peaceful mealtimes etc, vs being somewhere with noises, and strange people constantly, I can understand. Perhaps I need to start getting my head around it now!

Agree with all @EmotionalBlackmail says above - my relative had a new lease of life for a good 3-4 years before their health started to deteriorate further. Amazing the difference eating, drinking, company and actually taking your medicines makes! All things they forgot or were convinced they’d done but hadn’t when at home on their own.
They had their own mini bus, and had trips out to all sorts of places. They used to say it was like being back at boarding school!

Absolutely agree that there shouldn't be a stigma around care homes, or actually any kind of non-family care.
It sometimes seems to me as if people feel the need to 'justify' why they can't be full time carer for their elderly parents. And that's one of the things that puts massive pressure and guilt onto the shoulders of (mostly) daughters.
There are pluses and minuses to both care homes and live-in or visiting carers, and there is no right or wrong in my view.
And (perhaps controversially) I also don't think that only the elderly parent ought to be 'centred' in the decision. So even if they insist that they don't want to move 'into one of those places', that shouldn't really be the end of the discussion. Because the family are also affected.
But it's really hard to just think it through intellectually and logically, and so a lot of us perhaps end up justifying things to ourselves and therefore perhaps getting defensive about our decisions (?)
This is in many ways very new in terms of our history as humans. We have never lived so long and been so determinedly kept alive with so little thought to quality of life and so much obsession about length of life.
It's going to take us a long time I think as a society to work out what it is we're trying to achieve and why. In the mean time those of with caring responsibilities just have to muddle through I guess?!

Seriously, that's a very interesting point about it being so new in our human evolution. It's like the fact that we now have enough food and no longer have to work hard to get it - we're biologically evolved for one life and we're living very different ones. Add to our longer lifespans, the fact that we don't now tend to live in multi-generational households.

And I totally concur about the guilt and justifications. One of my closest friends has both a high-powered job and her elderly mother living with her. I'm always justifying to myself the fact that my mother couldn't cope with the many, many stairs in our house, but you could argue that we could move to a totally different sort of house but which would probably involve having to move areas, move the kids from their schools etc, etc.

But mostly, I don't want my mother living with us and I don't want to look after her. And now that her dementia is progressing at pace, I don't know that I could even if I wanted to.

Valley that is so true. There is literally not a single situation I could think of where I would accept my mum living with me 🤣 (and I'd have to have a gun to my head to move in with her - also DH and DC would divorce me 😂)

What is the big concern with going into a care home? You can’t eat what you want, when you want. You can’t get up when you want, go to sleep when you want, get up in the middle of the night if you want. Most of your belongings will be got rid of. You lose the house you love, the garden you love. People patronise you. Things need to have got to a pretty pass at home before a care home seems attractive. Yes, I’ll end up there eventually, but I view it with as much enthusiasm as the knee op and cataract ops that I will also need.

Understand completely! I was so glad my house has stairs both back and front. Dad is trying so hard not to be a nuisance, but we’d drive each other mad within a day

I think it’s a gradual journey to that loss of autonomy though Mere - with carers visiting 4x a day, mum already eats to their schedule not her own. She eats what I buy her, which hopefully is what she likes as I try to buy things she’s expressed pleasure at eating in the past. She’s lost interest in the house, the contents and garden. It’s not such a big step for her at this stage of her life compared to how it would have been a few years ago.

i think for my mum it’s still the privacy that’s driving her decision, and things will have to get quite bad before that would be overcome. When she was in rehabilitation care she shared a room, and also had other patients wandering into the room. It was more hospital than care home, but it put her right off, even though she improved immensely while she was there. She’s always been a bit of a loner and happy with her own company so I think the idea of potential forced jollity and socialisation is not an attractive idea at all to her. I can’t say I blame her on that point.

I think it’s a gradual journey to that loss of autonomy though Mere - with carers visiting 4x a day, mum already eats to their schedule not her own. I'm sure you're right @funnelfan That's why my bedbound father is actually content "I'm warm, I'm fed, I'm comfortable - I'm happy" whereas my 80 year old DH says "don't ever put me in here, I'd rather be dead".

Forced jollity and having to share a dining table with someone I didn't want to be with would be high on my list of things I didn't like.

Forced jollity and having to share a dining table with someone I didn't want to be with would be high on my list of things I didn't like

me too, now. It was great at 18 when I was a student in Halls of Residence, but I do value my own space very much in my middle age!

I just know that seeing my Dad how he is, the pain and discomfort, the lack of mobility, and the effort that even sitting down or getting up requires, makes me hope I do not reach that age!

Today we spent about 40 minutes with one of the many consultants he sees, and I have to say the man had the patience of a saint. He listened to my Dad talk about many unrelated ailments and woes, and kept trying to steer Dad back to find out what the actual issue we need to resolve is.

I'm learning that my Dad will only do something if a consultant suggests it. Eg, he is thirsty and has dry lips at night. I've suggested drinking more during the day (he has less than 5 glasses of water), and turning down the heating slightly (it's like a sauna). When I say these ideas, he says we need to wait a few days until we are at the appointment. The consultant suggested both these things (as I'm sure would any of you lot reading this), and my Dad agreed instantly to do both.

I'm feeling like if he took me up on some of my ideas, we could save a lot of trips to the various specialists. Clearly I'm no doctor, but some of it is surely common sense?!