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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.

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 19, 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 19, 2019
So hard but sounds like you've made peace with it. I need to too.
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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 23, 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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It sounds like you are doing your best. You say you are a planner so you can try to learn as much as you can such as locations where you can place your sister, contacting social services to see what your state offers. I am a planner also. I know that I have a touch of anxiety. It was recommended by my therapist to try mindfulness breathing techniques to relax. You can find these 10 minute exercises on YouTube.
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Beatty Jul 19, 2019
Thankyou. Yes I've researched group homes & have everything ready to get on waiting list - just no authority to proceed.

I just started seeing a therapist last week. Questionaire checklist found my previous touch of anxiety had rocketed to severe! - not proud of that. So, my homework is the breathing exercises too. Also trying an app called Smiling Mind for meditation.

Thankyou for reminding me to breathe today :)
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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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*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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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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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 25, 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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