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.
I'm picturing Zelda from Pet Semetary here. That didn't end well, and neither will this.
Is there a facility that has both a rehab facility and an AL, the type with a small stove, full size refrigerator and sink? See if you can find out what she likes about home so badly.
Then next, do research to find if something like that exists. Is it within her means?
In your opinion, she needs caregiving. In her mind, she is capable of doing everything that is needed to live comfortably. She is not totally aware of all of her handicaps. You might be slightly overprotective.
Find out from her what is it about the house that she likes and see if you can find it within the managed care system.
You are in a horrible spot. Please take care of yourself.
It's comes from within you.
You can grow it again in a new place.
If a person requires help to get out of bed, dress, for meals etc - having their own stove, fridge & sink wouldn't be on my list. They couldn't use them independently.
Finding a place with matching cultural & spiritual values, activities that are appropriate & sufficient medical, personal & emotional support would be.
While you are ‘the answer’, sister can refuse other support. You disappear, and she needs the alternatives. There’s probably only a week of mess between the two positions.
Better for your sister to have to make the adjustment now, while she's still comparatively young and you can help her, than for her to have to do it when you're dead and she's on her own.
"Am I wrong to tell her she can't come home?"
Am I wrong?
No.
But it does not have to be YOU that says no. It's not like you are in the doorway saying Yes you can or No you can't enter.
LIFE is telling your sister No.
The hospital staff, her medical team, the Social Worker. They are using their medical knowledge & her current mobility status to guide their decisions.
"They suggested a nursing home but she flat our refused. She insisted on going home".
Your sister saying "I'll manage on my own" is just wishful thinking. She does not have a plan. Just wishes.
This is denial or lack of insight.
It's not up to you to break her denial, convince her or even to make her feel better about it. However, you can help her by arranging those professionals to talk with her: the Social Worker, maybe a Psychologist/Pastoral Care/Councillor.
The staff can *suggest*.
Your sister can choose.
BUT choosing Home is only a valid choice with support. Sometimes a 'Care Trial' is arranged when denial is strong.. for caregiver or patient, so they get a trial at their new reality. You've already done this. You've described how & why it didn't work. You can reason & can see reality. Your sister appears cannot.
In these cases, when reason is missing, you have to move to working behind the scenes instead.
Talk to the Social Worker. Tell them how & why the home trial didn't work last time. That sister now lives alone since parent's passing. Explain you cannot meet her needs. Then the discharge plan switches tracks from Home to Facility. They will be the ones to pressure your sister. If she still flatly refuses, yet cannot get herself home, a cognitive neuro-psych evaluation can be required. To assess her capacity for decision making. Sometimes Guardianship is required.
I'm sorry of all this has already been said - this is kind of my interest area & I dived straight in. Off to read all the replies now.
Please keep chatting if it helps. This is a stressful situation, a big life change event for you both.
You have this loss plus the added responsibility for your sister. Your parents apparently did not plan for your sister's care past their own lives. This happens a lot. There can be many assumptions that a sibling just steps up..
Your parents caring for their adult offspring with disabilities while living together is one situatuon.
A sibling, attempting to keep a disabled sibling, unable to live alone, in their home, alone, is a totally different situation.
When I put it like that - do you see the difference?
The facts are:
Your sister is now dependant.
Therefore she cannot live alone unless she has adequate round the clock care.
Now that family cannot provide this level of care, she must face reality. Either be able to pay for & arrange round the clock care in-home or move.
Blunt but real.
Sadly, I think youpre going to have to make it clear to the nursing staff that your sister will no longer have any family support, and that it's up to them to figure out what to do with her.
It sounds like she's competent, so I'm not even sure if she can forced into care. However, this is the time to stick to your guns and not offer yourself as an option for help in any way, shape, or form.
How does your sister think she'll even get home and in the door without assistance? If even that can't be done, I don't see how she's going to be released to go home.
"How does your sister think she'll even get home and in the door without assistance?"
This.
If you can't call a taxi, or get yourself in your house.. this was exactly my own sibling's situation last hospital admission.
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.
Focus on all the compassionate & intelligent responses you've gotten instead, ignoring the ones that are intended to cause strife & upset.
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.
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!
"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.
I had a friend who was in Rehab. She fell and broke her upper part of her leg. It was found she also had stomach cancer. She was wheelchair bound. She was deemed 24/7 care and told since there was no one to care for her at home, they could not release her.
Your sister needs to understand she is now 24/7 care and its not fair for her to think you will take care of her for the rest of your life. The SW needs to be blunt with her and say ur now 24/7 care and with no one in your home to give you that care you now need LTC. This is going to happen whether she wants it or not. You were there for her for years but you are getting older and deserve to have your life. You can visit her. Bring the kids and grands to visit u just can't care for her.
She may find she likes LTC. She gets 3 meals a day. Clothes washed for her. Everything she needs except maybe new clothes. Socialization. Activities. People around 24/7. Some people do better in these places.
Please no guilt. As said on this forum, that is for people who have done something wrong. You have done nothing wrong. Alva always says, take that G word and change it to Grief. You have a family, husband and a home. They are your #1 priority. You are not able to physically care for your sister. All that anxiety is going to do is worsen your asthma and you don't want that. You can be there for her without doing the Caregiving. Your just going to have to say "sorry sis, you care has gone beyond what I am physically able to do."
If your sister could manage the way she claims, she would have already gotten herself to her home.
Nobody gets to tell you what you need to do for them. If she doesn't want to visit with you, stay home, she's not entitled to visits. I would tell her, if you are going to behave this way then I won't be visiting, call me if you need anything, bye-bye!
You have been very generous with your sister. You simply cannot give her all that she desires.
Your sister has to start thinking realistically and accept that she needs 24/7 care in a facility.
Best wishes to you and your family.
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.
Did the charge nurse tell your sister this as well? If not, ask the nurse to do so.
You've done as much as anyone could do. At this point, though, you don't have to stay enmeshed. You go to see her and she's furious and rude. So don't go see her.
Let those who are supposed to be making sure she's safe be her advisers - her only advisers. You are recovering from a serious illness, you have other ongoing health issues, and what makes you think you have to be the only one to convince her? I know, it's loyalty, and you're a good person, and you've taken care of her for so long you think you're the only one to do it. Even though she is angry, rude, demanding, and killing you. No where is it written that you must be the martyr to die on her cross.
Cease contact with her. I know, she's scared, but let her figure it out for herself. Then when she's in her new digs, send her a "Good Luck In Your New Home" card from the dollar store, because at this point your mean, controlling, and foolish sister deserves nothing more from you.
I wish you the best and a continued recovery from Covid.
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.
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.
Sometime, probably within the next year, you will need to address what to do with the house and how to make it consistent with your long term goals and any commitments you made to your parents.
I expect that the best thing to do would be to sell it, emptied but otherwise as is. AARP has a book, “Downsizing the Family Home” that can help you get organized. Real estate agents can give you an estimate of market value in hopes of getting your business.
If your daughter wants to buy it, think about how to make that fair: price, opportunity for other siblings to make offers; get the paperwork done professionally through a title company.
Don’t try to rent it out if nothing in your education or experience qualifies you to be a landlord. There is a lot of work involved. The expenses are lumpy and can be unpredictable, and the income is not guaranteed. Renting to family is worse. When you eventually pass, the other siblings could become their sister’s landlords or need to sell.
What to do with the proceeds depends on what your commitments might be. I doubt that she will recover enough to enjoy a replacement property. Putting the money into 4% savings and using the interest for her benefit could be fair if you were promised that your family could eventually be entitled to the house.
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.
No, you are not wrong when telling your sister that she cannot go home. Your sister is in denial that she thinks she can manage on her own. What she is saying is quite common.
Please note that up to 40% of family caregivers die leaving behind the love one they were caring. What would your sister do if you were no longer there to help her? Don't forget your grown children would be without their Mom, and the grandchildren without their grandmother.
What about the house that your sister had lived in... who now owns it? Does your sister now own it or was she given Life Estate to live there? If your parents had given the house to your sister, she could sell the house and use the equity to reside in an Assisted Living, one that can manage her care.