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.
How long has she been refusing to mobilize?
I should tackle those two issues in that order first, with the help of her medical/healthcare team. Then, I expect we'll all be wondering why you and your husband have both your sister and your mother living with you...
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?
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.
Can your sister dress herself? Change her clothes & underwear herself?
If she CAN but won't, this is a form of self-neglect.
RA is painful but depression may be the main/bigger culprit. I would suggest she seek more mental health support & treatment.
64 is very young to be so dependant on others for your daily living. Does she have other health conditions too?
It sounds like you have a very full time care load with your Mother already.
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?
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.
"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.
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.
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.
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.
Its your home. You are not responsible for what you brother did. Its not fair that Mom expects you to care for a sister that does nothing for herself. She does not have to actually shower. You get her a shower chair, a tub handle and a handheld shower head. She sprays herself off, suds herself up, and sprays herself down again. Why do you wash her hair? Does her RA keep her from raising her arms?
I would NOT take on POA for her…..
this is a train wreck, I’m sorry for you and wish you peace with this..
With pressure sores in the picture, she has GOT to stop sleeping in her chair. At a reasonable bed time ask her to turn the tv off, or take it away (we can't do that but you can, it's your house), and stand there with your hands on your hips looking determined - that's what we do, anyway :) Is her route to bed straightforward? - no obstacles, not too far, nice when she gets there?
What a user she is.
Brother hurt them, so now they get to hurt you? They are both taking advantage of you. And I don't think your mother is blameless if she expects you to house, feed, and provide caregiving for the two of them.
They should both be contributing more than just some money for their food and occasionally some more. Did you give up a job to be their caregiver?
Your sister needs to go to a facility. And it may come to the point where your mother needs one, too.
Yesterday my nephew needed an chest Xray for a physical. He is 5' 6" with physical problems from birth. Last year he purchased a Rollator with a seat because we had an incident while running errands. He fell and at almost 300lbs, I could not help him up. I had to get help. We went to the hospital with him using the Rollator. When we got to Xray the lady asked why he didn't ask for a wheelchair. When he went to get the Xray, I told her that he needed to walk, not use a wheelchair. I told him if he got too heavy I was not pushing him in a wheelchair. He now weighs 315. I am 5' tall, and 72 yrs old with arthritis in my lower back. He chooses not to do anything concerning his health. He is now prediabetic at 32yrs old and has high blood pressure which both would go way if he lost the weight. IF HE MOVED. Like your sister, he does not care.
Mom has to be made to realize she is enabling/disabling your sister. She is killing her. You haven't said it, but I bet sister is overweight. So, she could miss a meal. This is pure laziness.
So she gets mad. So she misses a meal. You are not her slave. May be its time for a little threat. If she doesn't start caring for herself you will call APS and tell them you can no longer have her in your home because you cannot care for two people. Probably won't work because there is a mental thing going on.
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.
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.
Other than that, I agree that it's time to try to level up care. A cousin told me a while ago 'You have to put your family first.' and I lived by that for a long time. Did what I could, but not at the expense of my husband and myself. There are resources out there - just have to find them. Start with local senior services or just contacting local facilities. I tripped across a local group/company that provided guidance on where to go and what to do - wasn't looking for it as I didn't know it existed until the woman I was speaking to said, "Oh, we also offer...." and I instantly said 'I'm in! I need help.
Stay strong, there is support for all of you out there.
In 2009 I was cripplingly slammed with Rheumatoid arthritis. I ALMOST understand not moving and rather sit in a urine soaked diaper than move even a one thousandth of an inch in any direction because, (as I once read RA pain described), it is exquisite pain.
Think tiny shards of glass in swollen joints. It takes your breath away. You almost don’t want to live, but having a greater fear of being helpless and having a rock hard head I kept researching and found help.
I’m told I still have RA but for the last several years I haven't had one episode. Everyone is different so the very last thing I listed (#4) which has sustained my present good condition may not be helpful but I can’t believe that one of the first couple of things won’t.
FIRST - Go to Road Back Foundation’s website - www.roadback.org.
On this site you will read about antibiotic protocol.
You or your sister will have to find a traditional rheumatologist who is familiar with this method of treatment. I believe the Road Back website helps to find a provider.
I was amazed that that worked practically immediately.
Btw, some people may rightfully argue that antibiotics kill the good germs in your stomach and intestines but I had no problems. Maybe because I ate yogurt, drank Kombucha and ate sauerkraut occasionally, but I don’t know for sure why exactly that 3 years of taking 100mg of Minocycline daily didn’t bother me, but it didn’t.
SECOND - I was also on Methotrexate, the (Road Back connected) doctor’s first choice. I had to tell this doctor that I especially sought and selected him because I knew he had been a student of the doctor who developed this amazing antibiotic protocol and at first he seemed to hesitate but I almost pleaded. I wasn't afraid of antibiotics as much as methotrexate, (it's actually protective) although now I praise them both.
THIRD - After several years of feeling 200% terrific I begged to stop one then the other pill. I continued to do very well for several years and then RA poked it's head up again. Btw, same as the first time it reemerged after a long spell of doing too much work and not getting proper sleep. I hate pills, but I went back on the 100 mg a day of Minocycline. It worked for me again but not as almost instantaneously as the first time. So there I was in heaven once again but after a while, bad me, and I'm not ever recommending this to anyone, I cheated or forgot taking that med somedays and then stopped and did well for a long, long time, until…
FOURTH - I call this my big discovery for me (this maybe not work for all RA suffers).
One day I made a vegetable stew called ratatouille that contains almost all my beloved Nightshade vegetables (eggplant, tomatoes, bell peppers. There's one more in the nightshade family, white potatoes, but it wasn't in this recipe). Within hours I knew something was up and 12 hours later I was viciously thrown back to square one with a vengeance.
White potatoes alone will do it too and must be avoided as well. Sweet potatoes are okay. And tomatoes may be eaten only if the skin and seeds are removed.
I briefly went back on a series of methotrexate for the inflammation. This worked even less quickly this time but I was grateful. After a year or so I asked to stop.
No more nightshades for me and I have been absolutely fine since.
Get informed. There are zillions of anti-inflammatory food lists, recipes, and tips.
I hope this helps someone anyway.
Please don't wait any longer to think about your marriage & future for both of you and seek alternative living & medical arrangements for mom & sister.
Talking with a hospital social worker for advice is a good start.
🤗 Take Care
You have been a good sister and daughter. You just didn’t fall into this role. More than likely, the family dynamics had you playing this role your whole life. Always giving and never getting. That pattern will never change unless you change it.
You said she lost her home. If her home was purchased at auction, whatever equity that she had in the home eschewed to the state. If those monies did eschew to the state, the owner has 3 years to make a claim with the city or state government to reclaim those funds. If more than 3 years have passed, the property is called abandoned property; then the equity goes to the federal government for
“safekeeping”.
There are companies that will call you out of the blue and say they “found” money in your name and they try to charge a finders fee. Do Not Pay To Get Your Own Money Returned To You! There is a guy on YouTube named Bob Diamond who makes his living by doing this. In the past, he taught classes unsure about now. They are not allowed by law to make you pay.
Also, have her check on these various government sites to see if there is any money from old accounts. Have her run down what happened to the equity in her home. I don’t know how often it happens but sometimes the bank gets their paws on the money and steals it by charging excessive fees.
It appears that the government doesn’t even attempt to return the funds to the homeowner or the homeowner’s decendants.
It is a tax free loan to the government. They have hundreds of Billions of our money. She has to track down the funds herself if she wants her money back.
This is something that your sister can do instead of or in addition to watching TV.
At this point it is up to her to research what I’ve stated and see if it fits her circumstances. Does she have a 401(k) or insurance policies or stocks and bonds.
There is no reason for them to be under your roof —except for the free room and board, the meals you cook and serve to them—you do all the cooking and housework, right. Do you wash their clothes for them, too. Do you bathe just your mom or your sister, too. Let’s not forget free Uber service and the free medical care you dispense. And they are saving their money while you have spent at least $50,000. They give you chaos, disrespect, confusion, lies and hate. Yep, CONTEMPT. The nicer you are to them the more CONTEMPT they have.
They are treating you like a slave and not even like the masters favorite slave either. More like that slave nobody likes or cares about.
They are leeching off you like you said your brother was doing to her. However, what they are doing is much worse than what your brother was doing to her.
NOTE: if she were married 10 years and 1 day, she is entitled to receive a portion of her divorced ex husbands social security. That is an indispensable fact!
Also, he must be retired and/or reached retirement age before she can start collecting. If he has already retired I would encourage her to go and speak with Social Security and have them rerun the numbers including this new data. It does not matter if he got married again, as long as she put in the 10 years that’s all that matters!
I just read one of your older email replies.
Your sister is a real piece of work. How does she have the huevos, the chutzpah, the gall to get angry when she has to do for herself. You aren’t her slave or are you. Your relatives are pimpin’ out both you and your husband. They have you both on the stroll.
What I see are people living under your roof who have absolutely no respect for you or your family.
Its all about emotional blackmail and emotional manipulation and them sucking the life out of you.
Bottom line is that you are letting them misuse your husband like they misuse you. You are failing to protect him from their poison. You are the linchpin and when you know better you will do better.
I understand more than you will ever know. My words are meant to help not to hurt. Blessed be.