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HadIt919 Asked January 2023

I'm losing my sanity. Am I wrong to tell my sister she can't come home?

I have a 62 year old sister who is disabled. She lived with my parents for her entire life. My father passed away 6 years ago and my mother got sick and died within two months. That was last spring.


I have been trying to take care of my sister which meant going to her house at least 3 times a day to help her get up and out into the living room, then to go cook her dinner and do laundry and other household stuff and then I had to go back over there around 10pm to get her back into her bedroom. She walked with a walker in the house but was having great difficulty.


Around the middle of October she had a serious fall and hit her head very hard. Half her face was purple for a month. She ended up in the hospital for a few weeks. They suggested a nursing home but she flat our refused. She insisted on going home.


The PT staff insisted she could navigate around the house with a wheelchair. She absolutely cannot. I ended up having to walk behind her with the wheelchair so she could sit down every few steps. It took forever to get to the bedroom and back. Plus she insisted on having a commode in the living room next to her chair and another one next to her bed.


Well after about 2 weeks of this, she fell again and laid on the floor for over 2 hours before I found her. Back to the hospital again. I told her it was too much and she couldn't go on like that. She agreed to go to a rehab in a nursing home for a short term.


She has been there for about 6 weeks now and has made very little progress. She needs 2 aides for everything and she hates being there.


The social worker recommended she go to assisted living but the nurses said that's not even possible at the level of care she is at.


Anyway, when my daughters and I went to see her a few days ago she started crying and begging me to go home. She said she can manage by herself and won't ask me for any help which is a joke. She insisted she could get herself in and out of bed and dressed and walk or use the wheelchair. The nurses and aides and pt staff all say she absolutely cannot. They said she will fall. She says they are lying.


I told her it's just not safe. She lives in a big two story house where she just uses the living room and bedroom. She goes from bed to chair to bed. It doesn't make sense. I told her that she needs to be where she can be safe and that is not it. She is furious with me and won't even speak to me unless I ask her something.


I have helped take care of her my entire life. I am pushing 60 and I have 4 kids and grandchildren that are the love of my life. I want to spend time with them. I recently had covid and I am still fighting the fatigue and joint pain and headaches. I have asthma and arthritis as well. I have severe anxiety over this and keep going over and over it in my head. I cant relax and have been having panic attacks.


Am I wrong to tell her she can't come home? It's the only home she has ever had but I cannot be there every day all day long anymore. We live in a very rural area and home health aides are not an option. The nursing staff said she would need 2 aides and no one will come out here anyway. We tried.


I can't go on like this. I just need someone else's opinion. I'm sorry this is so long.

lealonnie1 Jan 2023
What's shocking is the level of selfishness your sister is exhibiting here! She's not taking your life into consideration at ALL, and lying to get her way so she can use YOU to prop her up in her home instead of agreeing to go into a SNF, which is the logical answer here. Put your foot down hard now. No, I'm sorry dear sister, I love you but I cannot possibly accommodate your huge level of needs at home for ONE MORE MOMENT. It's not safe for you and it's not doable for ME, at nearly 60 years old with health issues of my own.

Agree to go see her often in managed care where you can be her sister again instead of her exhausted & overworked caregiver. Do not feel guilty either, b/c her state of health is not your fault. You didn't cause this, you can't cure it, and you can't control it. Nobody 'wants' to go into a nursing home, but that's where we find ourselves at certain points in life. It's known as Life on Life's Terms. We can accept that outcome or try to place the burden of our care on others. Your sister is choosing the latter, which isn't fair to YOU.

Wishing you the best of luck sticking to YOUR guns on this matter and helping your sister get settled in a nursing home for her OWN good.
HadIt919 Jan 2023
Thank you. I needed to hear that. My kids and I have been going to see her at least 3 or 4 times a week. She is about a half hour away. It's hard to keep going when she sits there and glares at me. She blames everyone else for her situation.
HadIt919 Jan 2023
Thank you for all of the helpful responses and for making me feel less guilty. It's been such a rough several months.

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AlvaDeer Jan 2023
You are not wrong. You are right. Unless you wish to sacrifice the rest of your life (and at your age you won't last long physically with this level of care).
You are going to have to be strong now to advocate for yourself, because clearly your sister is desperate and she is not completely rational on this subject. She DOES need to go into care, and yes, she is likely too advanced to go into ALF but that is something that can be evaluated by Social Services who needs now to begin advance planning for Discharge Plan.
You need to be strong enough to tell your sister that you are sorry, but not everything can be fixed, that you have physical and mental limitations and cannot allow her to go home, will NO LONGER ENABLE this unwise action, will NOT ASSIST HER if she chooses to go home and you need to stick to that. You need then immediately to take advantage of the best discharge PLACEMENT you are able to.
You didn't cause this. None of this is your fault. Not everything has a good and happy fix. You are doing the best you can, with the limitations you have. EMBRACE YOUR LIMITATIONS, and if you cannot, then get pychological counseling to assist you in doing so.
Guilt isn't the G-WORD for this situation. The correct word that begins with G is GRIEF. Grief that any of this happened to your sis, and that you are a human, not a God, and you can't fix it. I am so very very sorry, but it is time now for you BOTH to face the hard truth. You already have the support of the medical community to do that, which is unusual in itself.

freqflyer Jan 2023
HadIt919, regarding your parent's house, ask yourself would you want to live in the house at the condition that it is currently in? Houses that have been ignored for many years are full of surprises. If your daughter moves in, you then become the "landlord" and sometimes that doesn't work very well.

I really believe it would be best to sell the house "as is" then try to fix or remodel, as one usually doesn't get back the money they spent with updates unless it was the kitchen and bathrooms. Remodeling is time consuming and usually comes in above estimated cost.

Because of all the Do-it-yourself house shows, there could be "flippers" who would be interested in your house. I sold my parents house "as is" as my parents didn't do any remodeling in the 30 years they lived there. But if there were any major problems, they quickly got it fixed.

That way it will be one less thing to worry about. I use to be a "landlord" but once I got into my early 60's, it got too stressful so I sold. What a relief :)

Food for thought.

JoAnn29 Jan 2023
I just read ur reply

"The charge nurse actually told me that if I did do as my sister wants and took her home that they would have to call adult protective services because it would be an unsafe discharge."

Your sister has no choice here. There is no discharging herself. She has been deemed an "unsafe discharge" so now the State can be brought in to become her guardian. And since the house is yours, she really has no place to go back to. I feel for her. Its not her fault, its not yours. Its what it is. And the sooner she excepts it, the better for her.

By the way "unsafe discharge" is a law.
AnnMac Jan 2023
Thanks for the info on "unsafe discharge" did not know this!
funkygrandma59 Jan 2023
You make sure that the social worker knows what the doctors and nurses are saying about the level of care that she requires and keep the ball in their court to find your sister the appropriate facility for her to be placed in.
Make it LOUD and clear that if she were to return home that there is NO ONE to look after her as it's now just too much for you.
They can't release her knowing that she will be once again in harms way, so stand strong and make them do their job!
AnnMac Jan 2023
Your first paragraph is the BEST advice.
lealonnie1 Jan 2023
OP, please ignore troll comments like you're seeing here from people who create new accounts to make outrageous posts to people who are obviously suffering with tough decisions. Shame on them. This is a support forum and not one where people should be trying to add to a person's suffering. We're seeing it more & more lately, though, as if it's become a hobby for some people to create new user names just to create anguish. Such is the way of anonymity on the internet these days, sadly.

Focus on all the compassionate & intelligent responses you've gotten instead, ignoring the ones that are intended to cause strife & upset.

geddyupgo Jan 2023
You can tell her she is not safe to live in the house since you are NOT (shouting) able to come over to assist her every day with her activities of daily living (ADLs). She doesn't have to listen to you since she has not been declared incompetent (although I declare her very entitled and selfish). She will be furious and won't speak to you............ that's good since you won't be at her house catering to her whims. The rehab facility is charged to make safe discharges but a competent person can discharge themselves against medical advice (AMA) so there is really nothing that you or the rehab facility can do to stop her from going home if that is what she wants.
The ball is now in your court to stand firm and not run to her house to become her servant again. I know it is harsh but you have to preserve your own health and family and catering to your sister's fantasy of independent living, which she is clearly incapable of at this time, is not going to accomplish that.
HadIt919 Jan 2023
The charge nurse actually told me that if I did do as my sister wants and took her home that they would have to call adult protective services because it would be an unsafe discharge. She struggled so much at home I can't understand her wanting to be there just because it's her home.
Hothouseflower Jan 2023
She needs more care than any one person can give her. It’s safer for her to be in a facility. It’s sad but she needs to come to terms with her reality.

Just curious what were your parents plan for her care when they were deceased? Probably the classic kick the can down the road like my in-laws did to their sons and daughters-in-law with respect to my husband’s developmentally disabled sister.

cxmoody Jan 2023
If you were to keep taking care of your sister, and became injured, who would take care of her, then?

You’re fatigued and still suffering from COVID. Sounds easy for you to even catch another illness, since your resistance may be down.

If either of these were to happen, your sister would end up in care, anyway. But, at that point, she wouldn’t have an outside advocate who can help her with getting her needs met. So, she would be even worse off.

Better a placement now, than an emergency placement, later.

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