Gotta laugh - elderly relative. For elderly parents regulars modtly

[BeaTwix]

I have had many previous threads. I care/am PoA for a slightly distant elderly relation. It’s a lot of work. I live 400 miles away from them. I travel to their home city every 4-6 weeks to sort stuff out.

I used to call them the oldie as there isn’t a suitable mumsnet acronym but have had a pasting on here for “appalling”, “insulting” and “demeaning” language. Henceforth they will the TEPICF (the elderly person I care for).

TEPICF has just been discharged from hospital. This was not perfect but better than previous discharges however they have a new care provider and no one thought to put the care coordinator and me in touch. Or in fact pass reciprocal contact details to each party.

So Day 1 post discharge TEPICF has no lunch as they have wildly over optimistically told the new carer they will make their own lunch. TEPICF is banned from the cooker after previous mishaps, can’t get their head around the new fangled (15yo) microwave so trying to resolve this takes multiple phone calls and me giving step by step instructions about decanting soup into a bowl and microwaving it. Or simply opening one of the prepackaged long life pasta salads we stocked in house for this purpose… Despite two such phone calls by 5pm they still haven’t eaten.

i then try to work out who new care company are. TEPICF tells me there is a folder. They look at (they aren’t daft, and reading comprehension isn’t usually an issue) but they fail to find the care company name, or contact details. Then they tell me “someone” came to visit them yesterday (discharge day) about their care.

TEPICF doesn’t know

1. who it was
2. who they worked for
3. what their job role is - it swung from social worker, carer, care manager during conversation
4. how I could contact them and no, TEPICF hadn’t mentioned that I existed and needed to be kept in the loop. Obviously the laminated sign about TEPICF’s support needs with my contact details hadn’t worked either.

I then made multiple calls to the hospital to try to find out which care company it was. Finally got the name, but no phone number. I then had to call the care company. Again. Multiple calls/emails. Good conversation with care coordinator, realise this is a re-ablement package not permanent so there will be yet another change in carers (why did no one at hospital think to tell me this?!?) , care coordinator realises after my retelling of lunch and their visit that perhaps TEPICF isn’t as sharp as they make out. I make point that if anyone had put us in touch I would have told them all of this. All good.

Then on post discharge day 3 new carer rings me. There is water coming through the hall ceiling. They provide photos. TEPICF is a hoarder. House is now mostly dehoarded but nothing except emergency repairs have been done on it for 50years so there are lots and lots of issues..,,,

I’m at work. I’m Busy (am anaesthetist). I ask my siblings who both work from home on a more flexible schedule if they can help and provide tradesmen details. Neither respond.

At 11:30 I get a break and practically beg a plumber to go out.

He does. Leak fixed by 2pm. And he phones me to tell me and sends photos. Yay!!!!

21:30 I send a text to wider family congratulating myself on being a repair ninja.

22:00 TEPICF phones me. The hall ceiling has fallen down……

seriously. Do I never get a break!!!!!

You couldn't make it up. Doesn't seem like they can live at home anymore . Care package needs to be pretty intense to support this scenario . Is Care home an option at all ? Perhaps one nearer to you. No idea how you are expected to manage anything when you reside so far away and have a FT and inflexible job.

I sympathise. I had an elderly parents I was supporting from hundreds of miles away. It’s a nightmare. You never know what they’re going to do next, especially my father, and you could never get any sense from them. And if any care was being planned they always made out they were perfectly capable and could manage by themselves.

Oh goodness OP. I feel your pain I really do. Our 'caree' was only a minute up the road and it was still a nightmare. We did once go away for a few days and MIL's (for it was she) boiler broke down. DH ended up having a call in a shopping centre with a very garrulous repairman, on a phone whose battery was about to run out. MIL wouldn't let him in.

Your point about the total lack of any communication between the various departments and agencies involved is depressingly familiar. Goodness knows how many district nurse appointments they wasted because MIL wasn't where they thought she was.

Hi, I was in a similar position with an elderly non parent relative living 100's of miles away. It's hard going.
Social Services kept insisting they should stay at home because that's what they wanted but my relative also kept sending away any support put in place.
Eventually I gently persuaded them to try a care home near me as a trial.
They settled really well and we were able to make the move permanent.
I hope you find a more workable solution soon op. Xxx

What’s the money situation?

Do they get Attendance Allowance?

Would a local carer / housekeeper person be an option? To do general household things, and a date for emergencies, half a day every day?

What are you asking here? Clearly this sounds unsustainable.

Are you happy to continue operating at this pace and is this a spot for you to vent? Then fire ahead. You are doing a fantastic thing for your relative and you can be proud of yourself for that.

Do you want to take a step back from fixing issues as they arise for your relative? If so that is an internal thing, something you have to change in yourself. You can see that your siblings don’t rush in to fix things for other people for example so you can learn from their example maybe.

I think you need to clarify for yourself what it is you need now because obviously you cannot control the external stuff that is now guaranteed to happen as your relative continues to decline as is the natural result of aging. You can just start to understand your natural limitations as a person and put boundaries in place to respect those limits.

Thanks all. This is my space to vent. I’ve commited to this and actually ceilings falling down aside I’m in a place that is sustainable compared to the place I was in last summer.

I’ve built a really good network around TEPICF. The carers (BD), private cleaner (who does so much more), amazing neighbours, my friends teenagers who collect parcels, install tech, wait for tradesmen etc. The big barrier is getting the professionals to “see” me too and stop seeing her as capacious!!

There is help I can buy in but realistically it has to be a family member to sort out tradesmen. I try to balance long term benefit on house jobs vs. Likely duration left at home….

This aspect makes me so angry which I need to process for myself. There was a substantial family inheritance to EPICF about 10yrs ago. I really thought the house was going to get renovated. My sister and I provided details of a project manager and We offered to help but nothing happened and now 10yrs on I’m dealing with the after effects of significant property neglect. Some of the money got frittered away and of course work is much more expensive than it used to be. So I can no longer just do everything that needs done. What makes it all so much worse is that the bones of the house are lovely - great location and space, tonnes of period features but it’s just in a proper state. To give you an idea about how bad it had got I consider it a win that there is at least now functional electric lighting in all rooms. When I got back involved there was no lighting in the hallway/ kitchen and downstairs loo on the ground floor at all or staircase. Torches /table lamps were being used. So problematic when you have limited mobility. I actually cried when the electrician fixed it all and none of it was complicated - just a few new light fitting and a replacement switch. But TEPICF had been unable to organise someone to come in and do these jobs.

TEPICF is in the final hurrah at home. When they stop going out independently (lunch club x2, choir, exercise classes) then it’s time to move. I have started looking at homes and we’ve talked about it. They don’t want to preemptively look. I’ve been very clear this means they might end up in an environment not if their choice. But decisions have consequences.

My wee sister (the golden child) and my brother (other attorney) has been very blunt with them that the only reason they are still at home is because of me. Those conversations have produced slightly more cooperative behaviour!!!

I suspect they will need to go somewhere for respite while the ceiling is fixed. Which might help leverage the discussion to move. Or maybe respite will be so palatable it becomes permanent. I can only hope!!

But once they stop going out I’m going to force a move as getting out and about is the only thing that outweighs the risks/ graft on my part of them being at home.

My other half has a diabetic parent in their mid 80s, they have decided to just wing it and not bother with insulin or measuring blood glucose anymore.
Needless to say that resulted in a trip to A&E.
I suspect it's part of a strategy designed to make my other half feel as if he has to move in to keep an eye on the parent 😶

@Mrsbloggz they can be quite manipulative the older generation.

I know. I sometimes think it's a kind of automatic survival response, an instinct to grab whatever they can in an effort to stay in the game for as long as possible!

Oh I hear you. It's bloody endless.
Mine today is "the cooker doesn't work".
Yes it does. I would stake my life on it. You have forgotten how it works.

OP - I think you're wonderful looking after your 'oldie' as you do! I have three oldies and in no way is it a term of disrespect, it's a loving, jokey name that they prefer to being 'the pensioners' etc. They're not relatives so the choice is fairly limited!

Oh good grief. Working now in a community team that picks up patients discharged from
hospital within 24 hours, I’m so struck by the difference in hospital teams - some are able to imagine what could go wrong at home, some just accept far too much at face value.

i assume you are on the hospital record as next of kin?

@PermanentTemporary oh yes. And I’ve provided the PoA practically more times than I’ve had hot dinners.

Anyway care home is now looming. TEPICF is totally freaked out about the collapsing ceiling so I think they will go in for respite during the repairs (or earlier if it is deemed unsafe on formal assessment) and never come out.

It was touch and go if I sorted respite out starting this week. They are in a right old state.

Assuming the care home is local it doesn’t necessarily need to mean the end of her activities. I know one woman who lives in a CH, runs a car and uses it to get to choir rehearsals etc!

The ceiling might be a blessing. A few weeks in respite while everything is sorted, and they may realise that they have a better life in an environment where care is provided full time.

Perhaps easier than making a permanent decision from the get go?

Honestly, it’s so hard. I feel for you. Look after yourself. I recognise much from what you say.
I’ve never struggled with my mental health as much as I have these last few years in a similar situation with my DM.

I suspect this is my mother's game.
Make a hash of either living at home (which she clearly can't manage any more) or in her new sheltered flat (and there is no reason why she cannot manage here).
Therefore the only option (in her mind) is to move in with my sister.

Well I've got an assessment of the ceiling booked in this evening and a provisional respite bed from tomorrow if house is deemed unsafe.

Just deliberating about whether or not I should preemptively pack a bag of my own stuff so if I do need to move her I can dash out to get the last flight from LHR (I hate getting up early so would prefer to fly tonight).

Absolutely this.
Staying in the game means they gamble with unrealistic choices or decisions which in itself is more evidence they are struggling.
It can't be any fun for them.
But they do wreak misery on everyone else.

DSis and I had emergency hospital bags for DM & DF stashed in their house.
We also kept knickers and toothbrushes and chargers in our own cars.
Eventually you see a pattern ...

It drives me crazy when people tut, and say 'Well, the families should look after their old people!'

I think a) who on earth do you think is doing it now?

And b) you haven't actually been in this situation, have you? If you had you would know that not all old people are grateful and cooperative.

I then made multiple calls to the hospital to try to find out which care company it was. Finally got the name, but no phone number

Would making a serious complaint to the hospital work?

It kind of reminds me of the story about an elderly woman being dropped off at home by an ambulance crew in the middle of the night a few years ago.

Kind of well done for your siblings to make it clear she must cooperate with you, but also boo to them for not actually doing anything practical.

I not only keep packed bag in her house but it has an AirTag in it so I can see if she actually takes it to hospital.

Because amazingly despite having a ready packed bag she has actually failed to take it in with her.

And in the most spectacular unexpected way ever when presented with the options:

A - stay at home for now, as ceiling deemed safe, but move out to as yet undecided care home when repairs scheduled

vs

B - move out now to care home I really like, in a good location, close (ish) to her house for a period of respite while house repaired.

She chose B.

I was gobsmacked.

first sensible decision in a year.

Created havoc for me though. Emergency unpaid carers leave (which was really difficult for my colleagues), the quickest flight book/ pack/ trip to airport ever. Booked 18:15- walked into my brothers house 400 miles away at 21:30. But she is now in the home and tbh I think when the house is repaired she will opt to stay. Especially if a bigger room with a bit more space becomes available.

Should have preemptively packed my stuff as I didn’t bring several things that would have been useful. I did an emergency load of washing last night!!!