Back to Jan 2018 & our big event. The big stroke that struck Mum like lightning & destroyed her independance. It transformed Dad from a husband to a full-time carer. No choices there.

But I fully consciously choose to step up & assist as much as possible with the care needs of my sister, to help us all. (She has a triple disability situation).

The frog that jumped into the pot of cold water. Every week the temperate warmed up until this Jan I had to jump out to save my life before I boiled to death. Overly dramatic maybe... but it's how I feel.

Wow what a year! I've learned much. Some things have pleasantly surprised me too. How quickly Dad solved problems, arranged support & is flying along, good humour intact.

My sister however did not learn to fly. Did not crumple without their daily care, but instead just turned her gaze from them to me for all responsibility to manage her life. So I tried. Appointments, organisation, personal care, groceries. A black hole of needs. No end. Lift one leg into the car one day, then two are requested the next, then arms required to be pulled out. Jan this year was when assistance for toilet cleanup now expected by me (although independent when alone).

Time to quit. Is this burnout?

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Successful day. Ma's birthday party at sister's place. Sis in good spirits, apartment smelled ok, we all coped. Do love them but I think what I have/had is not 'burnot' but 'compassion fatigue' (Thankyou for ther term GeminiUnicorn - nail on the head).

Feel so relieved, having taken some space for myself, got some distance, feel like MYSELF again (not so enmeshed).

So sis doing ok. Looks clean. Better food in cupboards (due to Dad) Pepsi max now (sugar free yes?). Pain relief stacked neatly, doesn't look in use. So OK, maybe I overreacted?

Maybe it is possible (with her current care) to do OK...

Poor Ma, on the other hand looked so down. Turned 76. Balloons & cake. Older than her father got (stroked out @73).

Pa looked so pale & tired. Worried she coughs on thin liquids...

About to watch 'Still Alice'... more aged care...
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Maybe quiting would be too drastic but you sound like you could definitely use some help. Couldn't tell where you're from by your profile but your writing seem Europy? I just made that word up. Anyway depends on where you're from as to the help available good luck and DON'T JUMP! lol
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Beatty May 2019
G'day SparkyY, I didn't put where I'm from (to stay anon..) but righto, it's bonza to have found this forum. Cheers mate :)
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Precarious. Yes, I really like that word. I ussd it to decribe sister's situation with an honest chat with the Care CoOrd Monday. He liked it to. So THANKYOU!

Falls + poor eating + not managing incontinence + ? misuse of pain relief = precarious. Looks simple really.

He says it would ideal if sister could come to this realisation herself, so SHE can decide to change her situation. Agree but being realistic.... can't see it. Next.

Failing that, or skipping that, he suggests it's familiy meeting time. Me, Dad & a mediator. Also agree. I will give Dad choice on mediator: Care CoOrd, someone from his church or hospital social worker. Feels like an intervention...

Have been sitting on this all week. Hubby says, tread cafefully, that could rip your family apart - you against Dad. Also says, why are you still thinking about this? Stop banging your head on tbe wall. Your Dad has made it clear he can manage it all. Wait til be can't then do nothing & it will work out.

I hate it admit that Hubby may be right....
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I am tearing my hair out for you.

The sooner he makes a start on the handover, the longer Sister will have to adjust to the new setup and the better her chances of thriving on it. I should loud-pedal the benefits to her of having less precarious support, rather than tell him you're worried what happens to him. What does he care if he sacrifices himself? - but if that risk is a risk to *her* maybe he'll take it a bit more seriously.

Gnash gnash grrrrr!!!

Also, of course - her receiving support from other people doesn't *stop* him from being involved and interested too.


I'm even more glad you're staying out of the water :) - it's definitely not safe.
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Good advice Countrymouse.

Yes informed Care Co-Ord plus any other health service involved at about week 2 post stroke. Boring red tape saga.. I wasn't a nominee/POA/guardian, whatever title they needed - I didn't have it. (Still don't have it). No-one would give me any info, so I explained the situation to them, by phone, letter, email. Stated not at crisis point today, could be very soon. Require help.

But enter Super Dad. Takes on 24 hour care of wife (with some home help) plus resumes care of daughter. Mum can't drive her around but Dad can book taxis or ask me. Mum can't buy her groceries but Dad can order online or ask me.

Actual crises averted due to Pa & myself - well done us :) But that's when this frog started heating up... so I backed away a bit (guilt guilt) & now have left Dad with nearly all. Either boil or leave him to boil. But he's happy there! Says it keeps his mind busy each day, arranging all her appoinments, booking carers, taxis, spreadsheeting the costs, checking the cab charges.

But I need a backup plan. What if you can't do it Dad? But I can. What if you break your leg? I can still use the phone. Answer for everything. What if you die? Well I'm very healthy. Finally allowed a "Maybe in 5 years we could, maybe, start to think about the possibility of a different set up".
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Have you advised sister's Care Co-Ordinator of mother's now 100% dependency on pa? And therefore pa's non-availability to meet sister's needs no matter how much he would like think he could do it if only he tried hard enough?

I should get that down in writing and over to her prior to the family meeting. Then you can contradict him as necessary knowing that she already knows the background. Nobody wants to be a drama queen, but you can spell out that one parent's having had a stroke is plenty and you don't want to see another.
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Deterioration? Hmm overall I think yes. Falls (same) diet (getting worse) memory (same/worse) mobility (walking better but can't take shoes off anymore) meds (bit worse as possinle misuse of pain stuff). Mixed bag really. No really bad stuff. But not independant & never can be.

Advised Care Co-Ordinater today of current situation. Update on latests falls - oh yeah, inc another TODAY. Advised the possible misuse of pain meds. Tried to take the drama out - just the facts. I asked where to next? If diet/meds/falls worsens? Report to Human Services?

Suggestion was familg meeting with Pa - my lovely people-pleasing Dad for some straight talking. He is the one responsible (NOK). Sigh. Have tried: soft approach, harder approach, humour even drew diagrams once!

Same as with stubborn elders, for sure;
Option 1: wait for crisis. ER hospital, rehab, home if lucky or NH. Option 2: plan now & choose own assisted living (whatever is applicable for 47yr old with 3x disabilities).

Hubby gone to bed - he is SUPER relieved I found this website as he says he cannot talk or listen about my sis anymore - I get it. He has his boundaries set!
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You're dead right about the frog in the pot! And I'm glad you woke up and hopped it!

But... has there been a deterioration in your sister's condition? I would make the handover of responsibility as formal as possible, if I were you. Does she have a care team of her own?
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You need to call Adult Protective Services or whatever the equivalent is if you’re not in the USA and report an adult at risk.
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Beatty Apr 2019
Ta, Ahmijoy, been thinking it... prob just needed someone to validate that thought! Thankyou :)

There are carers that visit (am 1hr 7 days + pm 1hr weekdays). Adding 3rd this week (evening 1 hr 7 days). See if that keeps things afloat for a while.

If the boat can sail - great (without my help). If still slowly sinking I am no longer willing to bail out water. Will call in the rescue squad.
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I forgot to say what the problem is!

Have quit being shower lady, cleaner & chauffeur. Tryong to return to being a mere sister but am beginning to hate going to visit her. Her apartment smells like feces & urine & I am expected to clean up. Every siren going past makes me wonder if she's had another fall (average 1 per month). Starting to dread every family fuction as the expectation is I am her carer.
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