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Parents (76) care for disabled sister (40s). Sis lives alone but massively dependent on Dad daily. He is in good health but Mum hemiplegic after stroke, + vascular problems.


Have quit being personal carer, maid, driver, cleaner etc for sister. Other supports stepped up.


But no emergency or long term plans made by parents. Just won't listen. Assume I will fill Dad's shoes.


Feel like I've been swimming against the current for so long. Many people advice me to just float along, let it go, worry about it if/when it happens.


If sister lands on hospital (frequent faller) I will not be returning her home. Dad can - his choice.


If Dad gets ill - ??? Mum goes to emergency respite care but they will not take under 65s.


I am a planner - so hard to stop worrying about the future.

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You’re not wrong in any way for planning ahead. Those people who advise you to stick your head in the sand and wait for things to happen are clueless. My husband has a mentally challenged sister who is now 60. His parents planned where Donna would go from the time they realized she could never live on her own. Basically, they told their other daughter that she would be responsible for Donna when they passed and that Donna would go live with Diane. They set up a Trust for Donna so that Diane and her husband would never be financially responsible for Donna.
My husband, ever the “butt kisser” tried to tell his parents WE would take Donna but I threw a fit that would have made Mt. Vesuvius look like a cigarette lighter. I never got along with my in-laws and Donna, quite frankly was a spoiled brat. I certainly didn’t agree with their plans, but Diane knew Donna’s care would fall upon her from the time she was a teenager. I always felt Donna could happily live in a Group Home. But it was none of my affair.

You need to sit Dad down and in a loving, but very firm way, tell them that unless he consults an attorney and makes a plan for your sister, she will become a ward of the state.There is no “assuming (you) will fill Dad’s shoes” if no clear and concise care plan, including financial, is in place. you will wash your hands of Sis because you have done your time as an unpaid caregiver and you are done. Ultimately, it is Dad’s responsibility to make a plan for Sis and this should have been done years ago. What if, God forbid, something happens to YOU? What then? If he insists that she will be your responsibility insist that you need a care plan so you know how to proceed once it’s just you and her.

If Dad keeps continually refusing, reinforce that if Sis falls, you’re not taking her to her home or to live with you. You are an adult and not a subservient child. Ask him if he’d be more comfortable knowing she will have a care plan in place or if he will figuratively cast her into the wind and let whatever happens happen.
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Beatty Jul 2019
Amijoy: I have seen your common sence replies on the forum before & value this advice.

I have been reading your reply to my Hubby this morning. He now wonders if Dad does have a plan.. a disability trust.. something as he can't believe someone could not plan for something this important (but hasn't told us?). So he picked up the phone, called my BIL & arranged a date to descend on my Dad for a man-to-man chat - in person, to ask questions. Both DH & BIL agreed this has gone on long enough & we can all see the unspoken issue that Dad excepts 'us girls' to be the hands-on caregivers. (Well me, as BIL & Younger Sister live hours away in country).

I am sort of laughing at their 'riding in on white horses in shining armour approach', but also relieved there is more action planned - all my sit down chats with Dad have gone nowhere.

DH says I am too confronting with my 'I can't do that ', my doom & gloom threats of nursing home placements, guardianship etc.

DH & BIL wish to try a softer approach of asking Dad what he wants & how to help Sis in the long term.

I've suggested they use your line "Ask him if he’d be more comfortable knowing she will have a care plan in place or if he will figuratively cast her into the wind and let whatever happens happen".
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I am too, however, with some people one finds planning is a waste of our time. Like my mother, 94, lives alone in the mtn area of NC, her house is certainly not one for seniors, 13 steps up from the driveway. She lives 800 miles from me and my brother, but refuses to move here or to ID or accept any paid help. So, we wait until she falls or something else happens then we will jump in. That is all we can do.
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Beatty Jul 2019
So hard but sounds like you've made peace with it. I need to too.
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When Mom took my disabled nephew in at age of 18, everything fell on me. I didn't realize then, that Mom was in the very early stages of Dementia.

I was able to keep an annuity going based on his disabilities. Since there was insurance money from his Moms death, that went into a Special Needs trust. Then he applied for SS disability. He now has "people" who are suppose to help him when I am now and continue when I am not around. Boy, has that helped when it comes to forms. I have learned to hate them.

Your father is doing her no favors. If she can live on her own, then there are things she should be doing for herself.

If Sis has Medicare she maybe able to get in home PT if a doctor writes and order. Medicaid may be able to help with transportation and in home care if she would benefit with an aide. Call your County Disabilities Dept. My nephew gets his services thru the state of NJ. If she is on Medicaid she should qualify for the monthly government food. Office of Aging may have some resources. The usually have buses for Seniors and disabled. There are resourses out there.

My nephew works for a workshop called The Arc. They pick him up and drop him off. They r taught small jobs that they earn a little money from. Its socialization.

You are correct, Dad needs to plan ahead. He is taking care of two people. This is going to age him before his time. He needs to plan ahead. Tell him you will not be able to do it. You will be there to help, but you have a family of your own ur responsible for. Have as much info available as u can. After that, its a waiting game. Be ready to place Mom somewhere. Same with sister. I would not take either into ur home. You are entitled to ur life with ur family. The responsibility to both Mom and Sis is to find them a safe place to live.
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Thanks JoAnn29. How hard to suddenly have the resonsibility for your nephew. Does he live with you? I hope the situation is working for you & you get enough support.

"Your father is doing her no favors. If she can live on her own, then there are things she should be doing for herself".

Yes indeed. But can't do for herself (so so much) & also won't. She lives like a 6yr old would. Does *fun* things & parents did the rest. Eats yummy food, watches tv, hobbies + does have workshop job 2 days a week. A new (truly amazing) national disability scheme is now onboard & providing personal care, cleaning & transport - all for free! Great but Dad is buying groceries, medicines & incontinence items. It's occured to me that this is abuse to be left without these items or ability to obatin them. But then I'm here right? On call 24/7 with creditcard awaiting for her every need/want/whim.

"This is going to age him before his time". Already is.

"Be ready to place Mom somewhere. Same with sister. I would not take either into ur home".

Saved from guilt on this one! Sis can't get up steps front or back, Mum's wheelchair doesn't fit in narrow doorways, neither can get to the toilet past narrow original 1930s bathroom.
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I hate to say this, but you sacrifice your life being a caregiver. I would not take that burden--that should be your only plan. Don't let dad say otherwise he won't be around to support you if you choose the caregiver route. If you are not retired like in your 40's I can only say get your sister on Medicaid (she's most likely eligible) and the plan is put her in a nursing home because once they die, their social security checks stop and the bills keep on coming in and you are supposed to suddenly care for yourself -- work a job and if you are out of the job market it will be harder to get a job in addition to age discrimination. You should worry about the future if you choose to be a caregiver, because it will hit you square in the face when the hammer falls.

If she is already on Medicaid no worries..nursing home placement is very easy. SO stop worrying.

The name of the game is SURVIVAL. Don't be afraid of the future. Let tomorrow take care of itself..but always keep #1 in mind and that is your own life which you must become your own caregiver.
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Beatty Jul 2019
So true! My current plan is to SURVIVE them all!!
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I admit that I don't know anything about caring for a disabled young person. If I were you, I would look for living arrangements that would be able to pick up your dad's work if that should change. Once I found a/some possibilities, I would sell the idea to dad with the approach that if the switch is done right now, he is ready and able to help with that transition. This would be a kinder, gentler approach for your sister. If he waits until the proverbial ****** hits the fan, he may not be able to do anything to facilitate her move which would be far harder for your sister. I'm wondering if there might be a new option for your sister. States are wising up to how expensive some forms of care are (nursing homes for example) and are developing new programs and paradigms that are less expensive and allow the client to keep a little more money.
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Its stressful to plan and to get them to understand how important it is to help prepare. We will all leave one day. I am trying to get my mom to think about the burden that will be upon the 7 of us if we have to decide everything together and find out where all the information is hidden. Especially since she hoards. I found this ebook to be very helpful. its free and it will allow you to ask those insightful questions to start planning some. Copy and paste in URL -->https://payhip.com/b/fjsd
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At the independent living building where my FIL lives, there are a brother and sister pair. One of them is significantly older than the other and, in my opinion, that move was really wise. I agree that you need to sit your father down and be straight with him including that no one should assume that you will step in.

You do not need to explain yourself to your father. Your parents' choices are theirs as yours are yours. Whatever you are willing to do for your sister - e.g. POA financial and medical (or not) - is your choice and it ought not be foisted upon you by your parents.

On your own you can check out communities where the three of them - your mom, dad and sister - can live together and your sister can continue when your parents are gone. Tour them by yourself or with a trusted friend, narrow down the list, and present your dad with 2 or 3 options. If he doesn't like any of them that's too bad and not your problem.
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Hopefully the "boys" have more of a plan than just doubling up on dad. They need to know the facts, what needs to be done and what options there are to present to dad.

Curious when you say you quit the care part, "Other supports stepped up." - who and/or what are these "other supports?"

Dad does need to understand and hopefully explain that he has some or all situations planned for. He might ASSUME you will take over, but if you say no, or become incapacitated before he does, what then? Is there any kind of trust set up for her? If not, where does he think the money will come from? Sounds more like he is spending his own money for her needs - all fine and good if one has the resources, but not everyone does! He needs to know that if all arrangements are not made NOW, before they are needed, then sis will likely become a ward of the state - is THAT what he wants? Probably not, but if he doesn't do something, potentially sis AND his wife could end up wards of the state.
Hopefully none of the states that have filial laws will try to use them, but just in case, you are not in one of those states, are you? See https://en.wikipedia.org/wiki/Filial_responsibility_laws (and ignore New Hampshire - I added an addendum to the page because NH repealed in/around 2013)
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Beatty Jul 2019
The 'boys' plan is to listen. Ask questions & listen. Ha ha oops nearly joked on my peanuts! My DH is not the greatest listener of all time - but BIL is a trained councellor. Their mission #1 is to find out if there is indeed a plan, disability trust. If no plans, mission #2 to discuss plans.

Believe me, I've lstened & listened. All I heard was "she's happy living on her own" "we are happy to drive her everywhere, do her shopping, pay for a-z". Well happy times on the Happyland Bus will end when it crashes my dearies. No-one is actually driving that bus!

And I told & told & told - a lot of the common sence stuff you wrote. I even staged an 'intervention' type meeting with parents and the Care-CoOrdinator to discuss same. Shocked? Yes? Action? No.

So good luck boys.

The 'other' care that stepped up was a communitity care type service. It's new & still being worked out but is govt funded for those that qualify. I was not listed as a 'nominated person' & have no authority to make changes but more care, aide time etc was available - all they had to do was apply. But I was busy showering, shopping, driving, cleaning without knowing that was available FULLY FUNDED. For the usual chit reason that we don't want outsiders, only family. When I found out that was available, I quit & Dad was forced to use more aides. Then I quit driving her to appointments & aides do that to. Then when I missed my Sat visit, sister complained her 'worker' didn't come (ie ME). I got off the Happyland bus for good.

Sorry for long reply- rant over :)
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I, too, am a planner. My late mother was a polar opposite. She lived in her own home 500 miles away and 7 states away from me. Until her blood pressure ran at almost passing out stage. Sorry mom - I arrived in my auto to take care of you. You can no longer keep house as you are falling, starting fires in the home and give me a childish answer in your five year old voice - "I don't have to tell you everything." Wow - really?!!
Good luck & prayers sent to you.💙💜💙💜
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Which state is this situation arising from? I'm in similar situation with my mother in decline and in SNF(medicaid in Cal). Sister is limited in capacity for income and now has own disease that leaves her exhausted after a 3.5 hr work day doing kitchen help. Family assumes I'll take her in but I don't have space in small home. Brother with SIL has 2 extra rooms cus two kids have moved out. He and SIL and other extended family members have assumed I would take her in. Argh! Oh and she is on california medicaid like mom related to low income. She has always lived with mom. She is over 55 yrs old but not quite 60. Has a mid-size dog, argh...that can be limiting in possible room rental opportunities. Does from time to time have a behavior of entitlement. She would scoff at idea of working at Walmart. She was sharing room with me for a few months and now at sibling using one emptt room. I'm relieved but all are disowning me. They have walked over me and disrespected me for many years. So I'm also done with them too. Is becoming ward of the state possible in California?
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Jazzy1349 Jul 2019
Hi Renee, I am a private pay- client pays out of pocket- and I have experienced this situation firsthand, between two sisters, about their mother. They quibbled back and forth about who was gonna do, or who wasn't. The youngest stepped up, but the oldest disagreed with everything done, or not done. Neither had a plan in place, just in case. As a result, when Mom got so bad she could no longer stay in her home, it fell to me, as her caregiver, to make the decision to have her moved to a critical care facility. They felt that since I was her "day to day" caregiver, I knew what was best. I feel they were wrong to put that responsibility on me. So my advice is to have a "sit down" with all family, tell them how you feel, and that they need to decide right then what's gonna happen, when it DOES happen. Then, remove YOURSELF out of range of all of them. Above all, avoid the fallout that's sure to come.
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I like to have a plan for the future too. I lived with my mom for years and now she's gone. I just about worried myself into a mental illnes when the start of everything happened in 2010 when my mom had back surgery.y brother and I don't always get along and I didn't know what I was going to do or where I was going to live. It turned out that he asked if I wanted to live with him and I said if we could work things out. Otherwise I was planning on moving in with my pastor and his family. It's a horrible feeling when you don't know what is going to happen to you. I'm perfectly capable of living on my own but I have no transportation and on a fixed income so that doesn't leave me a lot of options.
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Beatty Jul 2019
I hope it works out well living with your brother. Maybe your Pastor can help support you through this time of change.

When my Auntie was without a good housing plan (widdowed, on pension & doesn't drive) she approached her Pastor. He was able to let her rent a church property at an affordable rate. The security she had from that allowed her to feel safe, & once less stressed, she was able to make longer term plans. She moved & now lives in a nice little unit, a very short bus or taxi ride to shops/Doctor/church. Housing stress makes everything worse - best of luck.
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I speak from a lifetime of experience. Contrary to what most people do, the second I become aware of something now or which may happen in the future, I IMMEDIATELY start analzying the situation and make plans to figure out options and what I would do if such and such happened. I never, ever wait until it happens. Then it is too late - I will be too stressed out or not have prepared for whatever and I may be in panic mode. While all is fairly "calm", I sit and define the exact problems that may occur, I think about them, I figure out possible options and solutions and then I immediately start seeking information and resources, etc. That is why I am still alive today. This has been my survival against impossible odds. I define, I think, I plan, I prepare - N O W. There is no other sensible way - never, ever wait until things happen. God help you if you do.
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*update*
Assessment from OT in (started so long ago I nearly forgot). At end of list of home safety improvements for now is recommendation for RESPITE CARE & assessment for ASSISTED (DISABILITY) LIVING.

I still have no authority to kickstart this but it's start of a plan! It's professional advice I can wave around. Copy to Doctor sent today :)

Thank you all.
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