Upcoming family function.
Have suggested Sister have an Aide drive & assist her - she doesn't think she needs it. Other family members (regardless of their own views) support her judgement to decide for herself. Fine.
But... They expect me to provide what is needed on the day. Not fine.
So within MY power is to warn them in advance I will not be the caregiver. Guest only status.
I suppose I am overthinking things.... but am working on my game plan when asked to provide assistance (driving, walking, bathroom etc). *No* is currently it!
Reasonable polite help you would offer to anyone - pouring a drink, slightly assisting up from a chair, holding a door open. These slid into cutting up a meal, physically hauling up out of a chair, holding open all the bathroom doors. Still reasonable until they slid again into full assistance for everything, including bathroom cleanups.
Quite probable she will not be able to get to bathroom unaided - this will cause problems!
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.
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!
Your questions are good. I do ask them - answers vary..
Q how she is to get there
Q how she is to get home again
A shrugs..you can take me.. or X will take me...taxi...
Q how she will manage eating, drinking, personal care and toileting during the function
A I don't need help with that.
All independently? If not independently, then she must nominate her support person
CORRECT. But cannot. Doctor says *lack of insight*, executive functioning problems.
This has been going on for years (with a nice break with lockdowns this year). Mostly because I was the # 1 bunny who assisted. Cleaned the restrooms after use, advised staff that chairs needed cleaning etc. Getting my car seats cleaned.
So I removed myself. Let it fall on others to see the real needs. They encourage her independence to choose for herself & leave the chairs dirty.
Social Worker told me to seriously skip Xmas & I did loosely plan a cruise...
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).
They are enabling your sister's bad behavior and crippling your ability to say "no" firmly to her.
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?
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.
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)))!!
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.
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?
I didn't ask the Out-of-Towner to help, just was warning her & that was her latest reply. She said 'we' can help... (like her DH is going to help.. never does). Also she has stated she 'won't do anything messy' many times before & that she will be preoccupied with her kids.
You are right. It is a trap.
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.
That is all.
I would have a sudden "emergency" on the day of the event or in some other way not be there.
I could develop a high temp & a cough... A friend used to get 'gastro' anytime she didn't feel like going somewhere. A hangover would be very easy to obtain 😁
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?
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!!
Liz
I worried A LOT but it was ok - with a but... OutofTowner didn't take on the role, just some tasks if directly asked. Has taken the same stance this year. Good but leaves sister without adequate care really. A hygiene problem developed last time (on the nose but not visible). I think everyone was too polite/timid to mention. I just moved seats & scuttled out a bit early. If this happens again I will directly ask if there is a problem she needs to go home to sort out - and I will leave immediately.
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.
It's only too easy to imagine how the family expects Beatty to be jollied along into it, like a good sport, s.m.h...
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.
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...
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.