Still don't have an emergency plan. I am a planner - so hard to stop worrying about the future. Any advice?
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.
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.
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".
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.
"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.
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.
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.
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)
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 :)
Good luck & prayers sent to you.💙💜💙💜
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.
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.