Same deal, lack of insight, expectations that I will 'do' when said no. Suggestions on game plan when I'm asked to provide assistance?

You have a game plan in place. It may be challenging to hold firm, but you have set your expectations.

When THEY try to get you to assist point out you said she needed and aide and no one agreed. You are not playing caregiver today. If I took my father anyplace people acted as if I was his caregiver. Even worse was when I was hosting and expected to host and take care of all his needs. This year I felt bad knowing I was going to have to stop taking him out of AL because I know I couldn’t do both. COVID took care of that for me.

Beaty - you're not overthinking things, your sister is not thinking enough.

To avoid any misalignment of your and their expectations, I recommend you send a text now stating that you intend to be a guest and enjoy your time at the gathering, and will not be doing x, y, z which should be done by an aide if she needs them. Then send the same text again a day or so before the gathering to refresh their memory and to give her one last chance to get an aide. Better they know your boundary and lower their expectations now rather than be "surprised" and upset on the day of celebration.

Do let us know how things go.

Hope you worried it " if you want to go to this party, you need to find an a ride and an aide because I will not be doing it" Not you should or could, makes it sound like there is an option ... you. You have a right to enjoy yourself and having to help someone toilet themselves and all that goes with it is not me being able to enjoy myself. Stand firm.

What's the venue? Does it have access and facilities for people with disabilities?

I agree that sister should decide for herself. She should decide for herself:
how she is to get there
how she is to get home again
how she will manage eating, drinking, personal care and toileting during the function

All independently? If not independently, then she must nominate her support person. If she doesn't, then if I were you - I'd be seriously tempted not to go.

See how many votes in favour of her deciding for herself she gets next year!

If you decide to go & then there is no Aide, say you can only stay for meal & then have to go. That means you eat & don’t sit & cut up food for mom or feed her or pull up in chair or bathroom assist. Do not assist if you already said no! Hugs 🤗

JoAnn: Message kept to one sentence, clear & on repeat. Check!

Polar: 1st txt to forwarn & 2nd followup already sent. Check!

This forum is my support team - thankyou all so much! 😍

Last year I did as you suggested over 4 events (2 as host). Txts to warn/suggest ahead of time then reminders a week prior. No change.

The main barriers to bringing an Aide seemed to be an insidious mixture of her denial *I don't need help* + the family's attitudes *family only must do it* + *she might be embarrassed to bring an Aide*.

And arriving in a wheelchair taxi being left outside with no-one allocated to push inside is not embarrassing?? (It was actually quite funny...)

My DH rescued her that time.

She did learn as she left the chair at home the next time... Just announced 'I need to go' & glared at me across the room to help her to the bathroom - also embarrassing, for both of us. I ignored (she went alone fine) but I felt crushed by the expectations of other guests as each step is a precarious wobble.

My other sister offered last time to do minimal assist (she knows she does not HAVE to step forward just because I stepped back) but wanted to keep the peace. But she hasn't lived it yet - hasn't been up to her armpits in it, said she too would have to call on me for anything heavy or messy...

I suppose it's my own brain/stress now that is the problem.

I just have to rehearse my plan of last year. Walk out that door if required (taking daughter too).

I for one would strongly suggest denying "family" the pleasure of your company this year.

They are enabling your sister's bad behavior and crippling your ability to say "no" firmly to her.

Oh I am so sorry sister, failure to plan on your part does not constitute action on mine.

Sheesh, I just don't understand people that think their wants supercede everyone or anyone else's. If you can't do it every other day of the year what makes you think you can today? Hmmm?

"executive functioning problems" I wonder if my late friend suffered from this. So, what can you do about it, nothing? Even though u remind her, she still doesn't plan? Has this been a lifetime thing?

I sat here the other day and wondered where my Mom would have been if I had never been born. I was from a previous relationship. I was 1 yr old when Mom met Dad, they married when I was two and he adopted me. They had 3 more children together. My sister passed in 1996. Moms dementia got worse after a bad hit on the head but was showing signs before. One brother lives 8 hrs away, the other 30 min. Mom was a good Mom. Our friends congregated at our house. I know the boys loved her but they never went out of there way for her. Calls were few and far between but she never complained. I was the one she depended on and I excepted that. I love my brothers and TG they have families because I will never be their Caregiver. I do not expect them to be mine. I am older by 7 1/2 years and 11 1/2 years.

I would stand firm. Anyone asks "I need this time for me". Next year maybe you can take that cruise. Family needs to learn sister is not independent and you cannot be her crutch.

Stand your ground Beatty!!

I know all too well that it's easier said than done!! I'm still learning how to set boundaries and stick to them!!

I gift to you my new mantra:

"What you except, you teach!!"

Hang in there!! (((HUGS)))!!

Small update;

Out-of-towner-Sib has now said "willing to help where needed".

I think this comes from politeness/keeping the peace rather than a desire to actually provide any hands-on care (& possible clean up).

So. Another on the list of cripplers really... 'crippling my ability to say no' as Barb put so well.

So be it. My NO still stands.

Beatty,
So now, you have to be involved to ask out of towner-Sib to help where needed?
I see it as a trap.

That is not the role of a guest.

You can figure this out!

Standing with you on being a guest. Maybe on a cruise ship?

Does anyone feel that the minute you announce a boundary, there is going to be nell to pay?

Ah, I think I see your gremlin...

OOT sibling has got confused. She thinks you want help with assisting your sister.

Uh-uh. You don't want help with anything, thank you very much. SISTER needs support to attend the function. You ain't supplying it. If OOT sibling thinks she is "happy" to, it suggests two things:

1. She has misunderstood the point, as above.
2. She has extremely hazy notions about the definitions of "help" "if" and "needed." And even hazier ones of what assistance your sister might need.

Everybody needs to get it into their skulls that for a person with a disability to lead life to her maximum potential, that person needs to source consistent, proportionate, independent support and USE it.

Keep being a broken record about the need to hire an aide, I should.

DO NOT GO!

That is all.

Your family has voted that it is more important not to have a "stranger" at a family celebration and more important to protect your LO's charade of independence than to make your comfortable and relieve you of your servant's role.

I would have a sudden "emergency" on the day of the event or in some other way not be there.

Stand firm with the NO.

I'd ask them why they are having a family get-together at all, in the midst of covid-19 surges. Do YOU want the exposure at the family get-together?

How about this option, just to be different. You go to the party but very briefly, because you have promised to help at a charity Christmas lunch for homeless people. Perhaps with your daughter too. You turn up after sister has arrived and found someone to take her inside, you go in with air-kisses all round. If sister hasn't arrived, you leave for the charity lunch before she gets there. You disappear before she needs feeding or toileting, or help getting home. This is a lot cheaper than a cruise (and less likely to catch something nasty like Covid). Actually doing it would be good (and hard to criticise). Taking your daughter somewhere special for lunch together would also be nice. It says to the family that you have other choices, and leaves them to find out what you usually do. If they are surprised about it, you say you assumed that other arrangements would have been made, as you suggested in good time.

Beatty,

I wish I had the perfect answer for you!

I struggle every day with setting boundaries. Some days are better than others.

I have found that journaling has helped me tremendously! Especially what I'm feeling right after I have an altercation or disagreement with a family member. I also write affirmations to myself. "This is my home, my rules!"

It's a great reminder to myself that my feelings matter.

You're feelings matter too!!

God bless ya girl!! Hang in there!!

Beatty...didnt you have to go through this last year as well?? The other family members just will not listen to you so i think,if i were in your shoes, i would take my daughter and have a nice, peaceful lunch elsewhere. Then, when your sister needs bathroom help, it wont be on you! Hope you get through this in one piece!!!
Liz

I also think it's best you have your holiday meal somewhere else where you won't be expected to clean someone's behind after you have enjoyed your scrumptious feast. Barf... barf...

Maybe just pop in to say hi to your sibs, so they can see your face and won't think you ignore them. But make some excuses, like what Margaret suggested, so you and daughter can escape.

You are not over-thinking anything. If your sister wants mom at the event without a hired aide then she can take care of her needs. Let your siblings know in advance that you are taking the holiday off and will not be caregiving that day. So if they want to have you and your daughter at the event, then they have to honor your request to have a day off from caregiving to your mom or you won't go.

Thanks all so much.

I decided to pull out today. Especially as after lunch, there became a plan for a different setting. One not even accessible! I had a very good chat with OutofTownSis. She is happy to welcome an aide along & supports the idea for the future.

I cleared up any 'hazyness' of the role, gave her the graphic dets.. she is willing to help - with limits - so we worked out an action plan for her that she is comfortable with. She hears me now that I will not be involved any more & why.

This was acceptable to me so daughter & I will turn up but with no guarantee to stay the entire time.

Hi Beatty

So, I've been wondering what you ended up doing. You mentioned in your last post that you decided to pull out, but then later said you might turn up. So, what did you do? How did it turn out?

Just want to know the ending of the story. Hehe...

Oh gosh thanks Polar!! I had been wondering whether to (bore people with an) update... Ha ha. Eating dinner. Be back soon!

It became an event in two parts.

Part 2: restaurant went well. OutofTowner was attentive & took on the care role as she said she would. Sis needed help to sit & stand & supervised walking. She really struggled to walk the short distance to a taxi & needed help to get in. Nothing unmanageable at all but as CountryMouse had said,
"to reach her maximum potential, she needs to source consistent, proportionate, independent support and USE it". I love this. I feel like it's neglect to leave her under-helped & struggling 🙁. I suggested she talk to her Doctor if things are harder/worse.

Certainly didn't need that observation from BIL that family should be helping more...

Part 1: I DID NOT GO.
I was given a call to ask if coming over (there had been no plan to). I gave the benefit of doubt - people can forget. May have been honest forgetfulness? Or maybe hinting for help?? Or maybe manipulation??? Are you coming over? Sister is coming - don't know what we are having for lunch.. don't know how she will get home... Hmm. I slept on that & decided to SKIP it.

Result was Sis could not manage the bathroom independently (as I had forwarded over & over) nor sit to stand, nor walk easily.

Outcome meant the appropriate care was planned for Part 2. Wrong!! Was same old deal.

I feel she will be housebound soon.

Thanks for the update Beatty. I'm glad you chose the right get together to attend. The other one would have ruined your enjoyment. As for the BIL's comment that family should be helping more, did he volunteer his help? Or did he not consider himself part of family that should be helping?