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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.

Just a little update to finish my question... before I better move to the Dysfunctional Families' thread.

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 !!!!!
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Ahmijoy Jun 17, 2019
Oh dear. Sounds like Karma also was a guest at the party.
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Sister's plan for party (as of yeserday) is to arrive in a taxi with a foldup wheelchair - that she will sit in but cannot push herself.

Interesting.
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I am appalled that she thinks she can do as she pleases and you have to assist her, at the real possibility of you being injured.

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.
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Reply to Isthisrealyreal
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My heart just sinks that he might be visualising Spielberg closing credits scenes of her and you abseiling together, beaming smiles all over your jolly little faces, her in a wheelchair and you gladly hefting her rucksack... Greater love hath no woman and all that.

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.
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Countrymouse,

"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!!
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I am not a psychologist but maybe my Dad is confused about uncondional love. His parents seemed normal to me but all 3 of his sisters married very young - all to bullies.
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Beatty, does your father really think your sister will adjust better to supported accommodation *after* she's deteriorated over the next five years, once her health has already become so precarious that it's not even a question any more?

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?
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Beatty, just in case you think you are alone, I know of two similar situations, both with middle age ‘children’ who have Multiple Sclerosis. Both are angry with the world and their parents, both have a huge sense of entitlement. One set of parents is likely to reduce themselves to poverty by hiring carers to give her an illusion of independence (including being taken to art openings interstate, which wouldn’t be most people’s idea of it). The other set copes with daily anger while the son lives off them on the property, furious because SS Benefits say he is still competent to look for appropriate work. My daughter also has MS, so I can understand the pressure on parents to help, but thank heavens my daughter is coping a whole lot better with herself. Your father deserves sympathy, but he needs to accept that it is not his fault, and neither he nor you can make up to your sister for the bad hand she has been dealt.
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Beatty Jun 12, 2019
MS is a very hard hand to be delt but I'm so glad you and your daughter are going well. I appreciate you sharing your personal stories. I think if we able to adjust to the changes in our life/health we stand a chance to enjoy what we can. Looking at what we can do & try to be grateful for it.

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.
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Yes there are excellent services out there - we have transitioned from ALL family care 6 years ago to many many services now. None seem to be up to Dad's high standards.

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...
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Yes there are excellent services out there - we have transitioned from ALL family care 6 years ago to many many services now. None seem to be up to Dad's high standards.

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...
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Reply to Beatty
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Your father expects a bit more of the she ain't heavy she's my sister stuff, does he? H'm. Does he.

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?
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Beatty, it sounds as though your Dad is now taking most responsibility for sister’s care and living arrangements. Sister’s condition is getting worse, and your father is getting older too. Sister is in the position of so many elders on the site, and not wanting carers, not wanting to spend, not wanting AL, and keeping up the ‘pretence’ of independence. You and Dad should perhaps step back and have a heart to heart about the future. You lay it on the line what you can and won’t do, and get Dad to make some decisions. Your sister’s welfare is more his responsibility than yours, and he can’t bequeath it to you. You have enough on your plate being good to your mother. When you have both come to some conclusions, you need to run them past your sister. She needs to take responsibility for not turning up and expecting other people to cope with her needs. If you 'decline' it won't put her in danger, it will make her sort it all out for herself. Of course it won’t go down well, but a plan is better than fighting individual difficult situations one by one, with distress all round each time.
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Beatty Jun 11, 2019
You are so spot on. You get me & understand. I am nearly in tears that a stranger can grasp the picture so clearly but my lovely soft hearted Dad cannot.
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Thanks for the support.

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.
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Beatty, you're going to have to stop inviting her. Bit of luck, she'll get the message and agree to use that very impressive-sounding service - then she'll be welcome again. Tell her the rules, she can stick to 'em or not. Up to her.

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.
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Reply to Countrymouse
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You told family u can no longer do, Don't Do It. Sister needs more help than you are physically able to give. She needs to find out the resources near her and use them. She should be walking with a walker, not a cane. Are there Senior buses? Thesecare equipped for easy on easy off.

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.
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Do you have any siblings? What would happen if you didn't rush to her aid? I have the same issue with my father who now needs help in the bathroom. I don't want to do that under normal circumstances let alone when I am hosting an event. Yet who else is going to do it? I have no brothers or sisters and it does not seem fair to expect my husband or children to do it. Can you make it clear to sister that if she arrives with no helper that you cannot be the default one? If no one comes out to the taxi to assist her in getting in how would she manage?
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Beatty Jun 10, 2019
Only other sis declined to come (lives 2 hours away) & doesn't do hands-on anyway. Also always glued to her young kids.

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!
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I believe if you want your sister to attend your father’s party, you’re going to have to reconcile yourself to the fact that, unfortunately, most of the attention will be on her because she needs so much help. Just as an aside, since she is incontinent, can she be asked to wear incontinence briefs? And, on the wheelchair issue, if she is a fall risk, she needs to be convinced to use a wheelchair. Perhaps one of her doctors could help. If someone in your family is agreeable, can you ask them to assist your sister with her needs while you host the party? Or, call Support Services to ask for suggestions. Could they provide help for this occasion or suggest who could?

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.
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Beatty Jun 10, 2019
It's my own guilt I suppose that forces me... she's very child-like. Just turns up & expects to be taken care of. Always has been.

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...
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