My older sister has Rheumatoid arthritis. She is mobile but refuses to get up. She has a sore on her butt from sitting and I have tried everything I can think of to get her to move more. I care for both her and our mom. My mom gets up more than my sister. I am at my wits end and my husband is tired of the urine smell.

Big hugs.

I don't know anything about your sister's personality, and besides we have a client with RA who's been with us for over a year (it's supposed to be up to six weeks, for our service) and who, seriously, has not been moved off her hospital bed in that time...

[I know. Don't start me. When I think of what state her mattress must be in I feel quite faint, but she won't be hoisted and she can't sit-to-stand even with Assistance of 2.]

... so I'm the last person to blame your sister for her possible fear and possible pain. But that isn't the point.

Your sister's condition and level of need has already wrecked your mother and now it's wrecking you and your husband too, and very worst of all it cannot improve in a domestic setting with only family care.

It isn't that you can't cope with her because she's too much work. It's that her living with you isn't helping *anyone*, least of all her.

Respite care is often a good start - it gives the person a chance to see what facilities are really like, rather than listening to horror stories; it gives therapists and professional caregivers the opportunity to get her into a sustainable routine; it gives you a break; it gives you a chance to support your mother while your mother isn't under stress either, which should help both of you.

And you can get the house aired, so your husband will be happy.

Do you know how to go about researching what's available in your area?
Helpful Answer (10)
Reply to Countrymouse
Crickerz May 27, 2022
To be honest I have no clue how to find what she needs. She had a nurse that came here once a week, but that stopped because they no longer take my sisters insurance which is Medicaid.
I think you are right about the fear of pain, I just wish she would tell her pain management doctor the truth about her pain.
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No one ever wants ANYONE “to go into Assisted Living”, but very VERY FEW people know that residential care may open the door to a new and restored life.

You are all living in unpleasant, unhealthy, depressing and discouraging surroundings, and unfortunately you have to be the source of change, or it will not happen.

You MUST do a personal search for local residential placements so that you yourself know what is available.

Tragically, YOUR WELFARE MUST become more important to YOU than your sister getting “angry”. You are the unwilling captain of a sinking ship.

Do your mother and sister have sources of income? Are they contributing to the financial support of the household? If not, IT’S TIME.
You NEED a professional cleaner BESIDES a team of caregivers, in a regular schedule to remove Sister from her peedestal, clean the area, supervise her personal care, and LITERALLY CLEAN THE AIR.

She's your older sister, but that does not allow her to run the show.

Speak up. I know, hard to do, but essential for the welfare of all of you. Your husband must REALLY love you to put up with this.

TAKE THE FIRST STEP. Yes, someone may get mad, but why haven’t you gotten mad already?
Helpful Answer (9)
Reply to AnnReid
Crickerz May 27, 2022
Yes they both have income, my sister is on disability and my mom has her SSI. They help buy groceries and once in a while they give us some money to help with utilities.
I think my sister would do well in a facility, she was in one before for a pressure sore but she would not leave her room and said they just left her in bed.
I get mad and frustrated at the situation and at times I get mad at my sister but I have never been one to yell or anything I tend to just keep it inside and take a few minutes alone.
My sister got RA in her early 20's she was married but he told her he couldn't handle illness and divorced her. Our little brother lived with/off my sister for years but when she lost her house he was truly nasty to her. Called her names, told her he hated her and when my mom refused to let him move in with her he did the same thing, yelled cursed her out and told her he hated her, he doesn't come around or speak to them and I honestly will not talk to him. I think seeing them both so hurt by him, has made me afraid of hurting them myself. They have been through so much pain already.
Rereading I thought of a scenario. If sister winds up in the hospital for the sore, lets say, you tell the SW she cannot return to your home. Tell them sister needs an evaluation for 24/7 care. That you cannot care for her and your Mom too. That other arrangements have to be made for your sister. You can turn her care over to the State. They will find a place for her quicker than you can. Medicaid should be no problem, she has no assets.

Your sister is bringing this on herself because she will not do for herself. I bet she wouldn't be living with you if it wasn't for Mom.
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Reply to JoAnn29

I hope this doesn’t come across as harsh because I’m writing this out of compassion. To answer your question of how to get your sister to get up and move: something has to change. Here’s how I see your situation.
Your mother prevents you from setting boundaries & reaching goals that would help your sister by 1) getting yours sister’s meals when you won’t, for ex., thus enabling/disabling your sister; and 2) exerting her influence over you by preventing what seems like a better path forward for your sister’s care (she doesn’t want her in a facility). You can’t let your mother take care of your sister because it’s too much for her – it’s what brought them to your house to begin with, and you rationalize their behavior because your brother treated them badly. You have a big heart, but you’re enabling them both.
I’d like you to look in the mirror, take a deep breath and say, “I deserve better than this.” Say it a couple of times. Believe it. Your husband and your marriage deserve better than this, too, and to tell the truth, so do your mother & sister.
You also need help to get better care for your sister, especially. I don’t mean more help at home, but someone who can see the overall picture and make a recommendation, including placement in an assisted living or a skilled nursing facility. That could be her doctor, a social worker, and when she turns 65, your town’s elderly services agency. Finances come into play. Medicare takes care of skilled nursing home care for 20 days after a 3-day hospital stay; then a copay for 100 days or Medicaid kicks in. Your mother will object & your sister will cry, but neither of them can recognize the toll this is taking on you.

Unless you take a different tact, you won’t get off this cycle. It will take time, but you all deserve better.
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Reply to imavent41
JoAnn29 May 29, 2022
100 days in rehab is not guaranteed. Medicare determines if the person is progressing. First 20 is paid 100%, the next 80 only 50%. There's only a total of 100days that Medicare pays anything. If the person is still there at 100 days then its determined where they go from there. If 24/7 care is needed and not available thru family, then its LTC paying privately or apply for Medicaid.
I'm just moving up extra info you provided below:

"My mom is 83, my sister is 64, I am 56 and my husband is also 56."

"She tells her pain management doctor that her pain is bearable on the medication he has her on. She is on medication for depression. She has been like this for four years but worse about moving for last two years. They live with me and my husband because my mom needs home dialysis which I do for her, and honestly I was having to go to her house multiple times a day for one reason or another, sometimes medical, sometimes she just needed help with house hold issues so having them here seemed like it would be easier, she also has heart issues and diabetes, her sugar drops very low often, she was caring for my sister but it was killing her to do so. As my sister is content to sit and have her meals etc. brought to her. My sister will get angry if she has to get up and get anything for herself. I am exhausted. When I talk to my sister she will start crying and she will say she will get up more, that will last for a couple of days. My mom doesn't want my sister to go into assisted living but honestly I am at my wits end with this."

At 64, it is entirely possible that the reason your sister refuses to get up and move may be due to having cognitive decline (and her diagnosed depression also tied into it). I'm assuming it's not easy or even possible to get her in for an exam. She may also have a UTI, which can create dementia-like symptoms.

I support transitioning her into a good, local facility. She will need to be assessed for what level of care she needs. Medicaid in most states doesn't cover AL but does cover LTC. Is anyone her DPoA? If no one, I would insist that in order for you to continue helping her she make you her DPoA.

In the interim, you can call your county's social services to have her assessed for in-home services. If she doesn't assign a PoA she will eventually need to become a ward of the county. Someone will need to have legal authority to make decisions on her behalf: so it will either be her choosing this person, or the county becoming her guardian. There's no 3rd option.

Her bedsore is concerning! It can turn into sepsis, which can be very bad very quickly. Maybe you can get her into the UC or ER on this excuse and then request a cognitive exam and check for UTI. Once she's out of your home, she may be recommended for rehab and you'll have a golden opportunity to think manuever her into a permanent facility. The socialization in a facility may be very good for her depression.
Helpful Answer (6)
Reply to Geaton777
Crickerz May 27, 2022
She does go to the wound center. She did have a nurse that came once a week but the nurse stopped coming about a month ago, she said that they no long take my sisters insurance which is Medicaid or Medicare.
I am very concerned about the pressure sore, she takes care of that and will not let me see it. I am relying on her and the wound center at the moment.
I have talked to her about dps, but she just refuses to talk about it. I do have that with my mom.
It helps a lot because I can talk to my Mom's doctors and I get important information that she often forgets. So yes, I will bring this up again with my sister.
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This "sore on her butt" may be a decubitus ulcer and that ultimately can be life threatening and non healing. This is something your Sis needs to see MD about at ONCE. Make an appointment for early in the week.
You cannot convince your sister to move around. But you are not a nursing home, and it may be time for your Sister to move now into one. She can first be seen by MD in consult so that it can be ascertained by that professional whether a stint in rehab with OT and PT evaluation and treatment is appropriate, whether there is sufficient pain relief and treatment at present.
If you do not wish to do 24/7 nursing home care Sister may need to move to Board and Care or to Nursing home. Speak with her first, make the MD appointments and let her consult with her doctors, then make arrangements for a move if that is the ultimate decision.
Helpful Answer (6)
Reply to AlvaDeer

Is your husband less important than your sister?
Are you less important than your sister?
Is your mother less important?
What your sister is doing is unhealthy for her, for you and for anyone else in the house.
It is unhealthy mentally and physically.
Are you legally responsible for her? Are you POA? Are you her Guardian?
She needs Assisted Living NOT provided by you or your husband,.
I would give her a "move out" date.
If this upsets mom so be it. Mom can remain with you or mom can move to AL with sister. Those would be her two choices.
STOP catering to your sister.
If she wants to eat she gets up, cleans up and comes to the table.
If she wants a drink, she gets up and gets one.
If she is mobile....If she is not incontinent but is wearing disposable because she does not want to get up then that is a complete disregard for you and your feelings. If she is incontinent that is a different matter.
Helpful Answer (6)
Reply to Grandma1954

She has a disease. The disease has destroyed any kind of rational everyday thinking for her. You are dealing with the disease now. You need to read on this horrible disease that literally takes the person you once knew. Don't take it out on her. She didn't ask for this disease. If this is your situation right now I would truly either learn as much as you can and get help. My mother was mobile to the week she passed. It's the disease not your person. Many prayers.
Helpful Answer (5)
Reply to TD2017
Isthisrealyreal May 30, 2022
RA doesn't ruin your brain.
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Tell her she gets up and has some courtesy for your husband, you and your home or she can go to a facility, whether that's AL or a woman's shelter.

What a user she is.
Helpful Answer (4)
Reply to Isthisrealyreal

Put her on a schedule while she is awake. She must try to use the toilet every 2 hours while she is awake as long as she lives with you.
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Reply to Taarna

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