Sister with disabilities - MI & Stroke Survivor.
The Past: I would take Sister out, drive her. Help to toilet if required. Social company with a bit of walking supervision.
Now: Sister needs organisation for outing done for her. Walks VERY unsteadily with a walking stick. Car to be parked close as possible to door each end. Avoid all steps & ramps if possible too. Can not/will not get legs in car, or sit in seat properly. Incontinent. Cannot manage/change. Requires help with clothing in bathroom, sometimes cleanup too. Sometimes need to go home as clothing wet. Prefers not to use wheelchair. Too heavy for me to push or lift wheelchair into car.
Had advised family her care needs are now beyond me at start of year. A FREE govt service is provided with Support Workers to accompany her (need to pre-book). Amazing but true.
My strategy has been to only visit her at home this year.
She arrived by taxi to visit Mum in respite care, knowing I would be there. Then couldn't walk the distance & so I found a wheelchair. Needed help in bathroom. I had to clean the wheelchair before returning.
I have invited her to my D's birthday. (Didn't offer to drive her though). She is planning to arrive by taxi with NO support worker. I chose it as local to everyone, with no steps ramp but I know she needs help to walk to the toilets. Can't ask my in-laws or my kids. DH says nope (rightly so).
Suggestions?
Btw she falls every 4-6 weeks are we are unable to get her up - it's emergency services every time.
I just want my D to have a nice extended family birthday lunch.
As for “forcing” you to care for her, no one can force you to do anything you don’t want to do unless you allow yourself to be coerced into it. Tell them once that you are not able to do it and drop the subject.
No other family member can/will do it (see above, re other hands-off sister).
She does wear incontinence pants when out now - but those pants are just NOT able to hold enough!
Have gotten her advice from a continence clinic on more suitable products/insfruction. Hope that helps! On medication for years for it. Loses bowel control sometimes now too. Diet baaad.
She does not object strongly to go out in the wheelchair on occassion. I just can't manage it & it appears neither can her regular petite female carers, can't push, can't lift into car boot. (It's apparently a light weight transit chair). Agency sent a male once for an outing but she was very uncomfortable with toileting assistance.
I just try to visit her at home. I can hardly manage her safely when out now. Like when my Gran was 93...
Sis has arranged to taxi share with Mum & Dad. Dad is the ultimate caregiver (except for bathroom duties). He will escort Sis safely out of taxi. Unpack & put wheels on Mum's wheelchair, tfr Mum into it. Escort Sis to her seat & return for Mum. This is what he does if I am not there to help with one of them. I always try to get there first if I can. But they go out without me too.
Physio has recommened Sis always has family or a support worker with her as she needs supervised walking at all times outside of her apartment. Also advised against solo taxi travel due to high falls risk. Sis denies that recomendation. Fell getting into taxi last year but it was in front of a hospital & they phoned me. Probably more falls I don't know about. Relies on strangers to assist mostly.
Looks like you & me just got to suck it up & get on w it as we are the only ones there to do it!
See, I am big for showing you the way and showing you how, but its up to you to carry it thru. I have talked about my friend K. She whines, u give her a suggestion, and she has a reason why she can't do it. Well, I am not doing it for you because you r capable of doing for yourself.
I understand that the situation when she arrived to visit your mother put you under pressure, but you HAVE to push back. You have to let the consequences of bad decisions land on the people who make them - your sister and your parents. You didn't soil the wheelchair. You didn't organise her visit. You could have folded your arms and walked, you know.
What danger? She wouldn't have been in danger. She would have caused a hell of a scene and felt a fool and thought you were hard-nosed. Well. Yup. But it's not your fault that you're having to be.
Reading my post back & I sound like a proper doormat! I would tell anyone else to just say NO!
Well this is certainly an education...
JoAnn29, I do try to call out the 'dependant' rubbish. But I need to improve!
I learned to leave her apartment before meal times. I know she can pay for lunch in cafe downstairs or heat up a microwave dinner.
I asked the physio do an assessment so I knew her limits & how far to push her. (L leg v weak, L arm paraylised). "I can't do it". Yes I know you can move your right side etc.
2018 Wouldn't walk more than 50 meters. So I wouldn't take her out unless wheelchair would be available at destination. Ordered her own wheelchair.
2019 Jan: Wouldn't get out of my car. Left her in car... stand off. If I want to ever get home had to haul her out of car. OK game 1 to her. But game now over as I have refused to drive her at all since. (She gets out of taxis on own if they hold the door).
Countrymouse, the game of crashing my visits with Mum, I had to keep up! 2pm arrived by taxi (Dad told her I'd be there). Next time I visit 1pm (didn't tell Dad). Took Mum to a separate building to cafe. Sis arrived & Head Nurse escorted Sis to us there! Said she is a high falls risk. (YES I KNOW). Head Nurse brought wheelchair for Sis so I felt I couldn't let it be retured dirty. I deposited Sis into taxi (with wet pants) for her to go home alone.
Next time I visited on a random day.
I told Sis she needs a carer with her. Told Dad. Head Nurse told Dad too.
Only visit her in her apartment. Haven't invited her anywhere for... ? years. All birthdays, Easter, Mother's Day held at Sis's place. I leave when I want.
Except Christmas. In local park, chosen as close to disabled toilets as Mum & Dad wanted to be invited somewhere, not host at their house. Other Sis lives too far, my house has steps front & back. Sis arrives without carer but I was going to share duties with youngest Sis. Except she bailed. She arrived with table decorations & dessert. Zero hands-on help for Mum or Sis, as was promised. Lesson learned. Awarded myself a degree in doormat that day!
I have as I write a website for Christmas Cruises open. I have jokingly informed them that is where I will be...
Also from 2019 neither my husband nor I attend falls anymore. We call emergency services. We also refuse to make 'welfare' calls when she sleeps though alarm & carer left locked out. I refuse to go shower her, put shoes on, countless things when a carer is late. Dad recently asked me to go shower her because she was incontinent & the carer would be 30 mins late. No. It was Sunday. What if it was a workday? Well she'd have to wait. Yep.
Have warned Dad I will NOT go pick her up if she is dirty & made the decision to go out without a carer. He thinks I should/have to/it's my duty. I said that's Sister's problem to solve.
I don't expect anyone to read this, but I feel so much better for just getting it out of my brain a bit. Time for a run & somewhere to send all that anger.
Yes I regret asking my family of origin to my daughter's birthday. Another lesson learned.
And your sister, no doubt, has her own learned helplessness reinforced by what she picks up from him.
Are you prepared to confront your father?
There are, let's count the blessings, good services available designed to support your sister's independence. Is your father not in favour of maximising your sister's independence? Why is he not encouraging her to take advantage of what's out there?
He really seems to believe he is helping her live her best life. Maybe he is... or maybe he is enabling the ridiculous house of cards her 'independance' is. She may be 47, but this forum has SO many stories of elders in similar houses of cards.
Confront Dad? I keep trying! Lots of mild heart to hearts over the years. Then got more direct. This year (getting desparate) I just stepped back to show him the holes. He just did more. More chats. More nowhere. Finally when pushed Dad said he thought maybe in 5 years, if her health was getting worse, we could, maybe, start to think about getting on a waiting list for supported accomodation for her.
OMG well then. But his 'plan' somehow calmed me. It made me think hard. I truly believe her chance of living alone in 5 years when obese, history of stroke, no exercise, no fruit of veg, plenty soft drink, frequent falls is about zero. The big 4 (cancer, stroke, heart disease, diabetes) will arrive before that waiting list.
Pushed Dad to get an outside Care Co-Ordinator appointed when Mum had her stroke 2018. Have been in his ear too! Care CoOrd offered to mediate a formal meeting with Dad & I. Like an intervention.
OT functional assessment now in progress. OT recommended a Social Worker be appointed too. YES PLEASE. So there is hope of a better plan...
He really seems to believe he is helping her live her best life. Maybe he is... or maybe he is enabling the ridiculous house of cards her 'independance' is. She may be 47, but this forum has SO many stories of elders in similar houses of cards.
Confront Dad? I keep trying! Lots of mild heart to hearts over the years. Then got more direct. This year (getting desparate) I just stepped back to show him the holes. He just did more. More chats. More nowhere. Finally when pushed Dad said he thought maybe in 5 years, if her health was getting worse, we could, maybe, start to think about getting on a waiting list for supported accomodation for her.
OMG well then. But his 'plan' somehow calmed me. It made me think hard. I truly believe her chance of living alone in 5 years when obese, history of stroke, no exercise, no fruit of veg, plenty soft drink, frequent falls is about zero. The big 4 (cancer, stroke, heart disease, diabetes) will arrive before that waiting list.
Pushed Dad to get an outside Care Co-Ordinator appointed when Mum had her stroke 2018. Have been in his ear too! Care CoOrd offered to mediate a formal meeting with Dad & I. Like an intervention.
OT functional assessment now in progress. OT recommended a Social Worker be appointed too. YES PLEASE. So there is hope of a better plan...
My sister was a prem baby & I'm sure it broke my folks hearts that she became a 'slow' child. She developed schizophrenia long before the stroke. I think because the Sz appears 'invisable' my parents just pretend it's not there, But it globally affects her brain which causes real life loss of functioning.
A magic solution that she can be cured (or become truely idependant) is the opposite to accepting the real situation. Waiting for magic is leaving her home 'independant' & falling.
Remind him that the sooner she starts, the better her chance of thriving.
What's sad is that you both want the same thing: the best possible outcome for your sister. What does he think that is?
"What does he think that is?"
Yes it's hard to fathom... must be to live like a Queen, enjoying fun hobbies, eating fun food, taking no responsibilities, falling frequently & having slaves.
I keep asking to discuss a better plan. Just keeps peddeling, no time to stop the bike to look for a map.
I keep explaining the current lack of plan will mean THIS is the default plan:
1. Health crisis + can't self-manage = hospital.
2. Hospital + can't live alone = nursing home.
3. Nursing home + immediate need = first available bed.
4. Potential long term stay while appling for wait list/funding for more appropriate setting (disability/under 65s) = potential downturn of mental health.
You see I have been taking notes from the forum!!
Volunteers, not conscripts. You did not give your sister MS, and you are not her parent.
And, besides, she can't afford to be utterly dependent on one individual any more than any other person on the planet can.
You are well within your right to tell her that she needs to bring an aid or she can not come to the party. This day isn't about her and she obviously hasn't learned that the world is not hers to be served by. (I have a BIL that was a premmie and his grandparents and mom ruined him by catering to his every whim and desire, then they begged death bed promises from my husband to take care of him. ) I brought that up so you can be aware that that is a very real possibility and speaking from experience, tell them no. It almost ruined my husband trying to be honorable with that promise while his deadbeat brother made really bad decisions and choices and fully expected my husband to pay the consequences. For 25 years I watched my husband help him and when my husband had a need that his brother could have helped with, he was told to go pound sand. I still hurt for my husband because of the pain I know that caused him, but I rejoice that it opened his eyes to the reality of the situation. Please don't let her steal anymore of your life because she didn't get your life. You didn't do this to her and you shouldn't be punished because it's her and not you.
I have a great aunt that lived with MS for 60+ years, she did everything she could to remain active and mobile, she told me she would not let it beat her and she stays active mentally, physically and spiritually to combat the destruction this disease brings. At 89 she was walking with a walker and knew her limitations. She brought her own diaper bag and did her best to stay clean. Not once did she ever make a mess when she was out with us. She asked her doctor for a handicap request for a handicap parking permit and she carried that with her so anyone that toted her around could legally park close. She never felt entitled to special treatment and she would only let my husband help her, she had an old ladies crush on him and even propositioned him one time. My point being, I think your sister is taking advantage of her handicap and could be using it to punish you for her not being healthy.
She's not comfortable with a man to help her, oh well, I am not comfortable with wiping your behind sister, we do what we have to do when we are the one that needs assistance. To do otherwise is just not okay, telling her the truth is acceptable. She needs to know that she has to put forth effort if she wants to be included.
If she can walk, she can change her own pad or depends. Make her do what she is able to do and if she is so feeble she can not help herself then she needs to stay home.
I know that sounds harsh, I don't mean to be, I just get so sick of others thinking they are the most important person in the room and to h3ll with the rest of us.
Interesting.
Sister did arrive to party via wheelchair taxi.
I found her & my Dad looking cold & forlorn at the side of the carpark. Dad had found she was a bit too hard to push on the uneven path - so there they sat. (Mum already wheeled inside).
I don't think I will ever get that scene out of my brain LOL !!!!!