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I have been the 24-7 caregiver for my younger sister for about 5 years. She is 63 years old and under no circumstance can qualify for Medicare (long story, so no need to discuss that). I am financially, physically and emotionally her full time caregiver. If I put her into any type of facility at this point, it will break me financially. Since she’s only 63, she will likely live a long time. So my only hope is to try to do everything myself to stretch the funds as long as possible.



NOW FOR MY QUESTION. How do I stop outsiders from giving totally unsolicited suggestions and comments about the situation. One woman told me I’d rot in hell for cleaning up vomit and poop on the sabbath, like every other day.



A common comment is that I need to stop “Being a perfectionist”. They say it’s too time consuming to fold clothes the way I do (since my sister hides dirty clothes everywhere, it’s the only way to tell which clothes, including mine, are semi-clean). Im told not to clean so much, even though the stench of vomit always lingers in the air. I’m told that I should make simpler meals, even though cooking is one of my few outlets/hobbies. I’m told to buy a bigger car to carry her wheelchair, even though I don’t want to give up my little car and spend money on a car I hate.



Everyone gives unsolicited suggestions on how I should better care for my sister. Do they REALLY think I haven’t spent hours every day looking for treatment, equipment , causes and solutions? Do they REALLY think I don’t take her to a plethora of docs? Must they really assume that I am stupid, despite having a PHD and a successful career before I retired.



no one offers to give me a couple of hours break or to pay for any of that equipment or home care that they believe I should spend my money on. Just comments on what I’m doing wrong. I have anther sister who insists that she can’t help because she isn’t used to handling vomit (like it’s something I could ever get used to). She also claims she can’t contribute monetarily because she doesn’t have the funds (she was a big shot at a major corporation, and often brags she got upper six figure bonuses, and is taking three months of vacations this year alone). She loves to come to my house complaining about her bad golf game, or excitedly telling me I should have gone to be party or another and that I really would have had fun? Does she really need to rub her picture perfect life in my face, while I stink of vomit?



As people make these so-called well meaning comments, I cut more and more people out of my life (most recently cut off the bragging sister). So now it’s just me and my Alzheimer’s sister 24-7.



I know that I should be more thick skinned, even though I’m at the precipice of insanity myself. But, how does everyone else deal with unsolicited insensitive remarks by people who aren’t willing to prove any substantive assistance?

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I would strongly encourage you not to cut anyone out of your life unless they are truly toxic. Many are simply ignorant as they haven’t walked your path, they can’t see what you’re experiencing and really don’t want to, many unconsciously think bad things are contagious and don’t want the bad things to affect them. I used to feel much as you do. For almost 30 years now I’ve had a son with complex medical issues and a brain injury from it all. For a very long time I wanted to cut off people who said stupid things or just didn’t get it. But I came to see, they couldn’t help not understanding our path, their intentions weren’t evil, just ignorant, and my resentment hurt only me. Some of those same people have now been big helps at times over the years, some not, but I’d never have found out if I just lashed out and cut people off. I hope you can change tactics, interrupting the comments midstream and saying “thanks for your concern, would you like to know what kinds of help we really could use?” Some you’ll never hear from again, and that’s okay. But maybe some will surprise you. You’re not superwoman, you have a long haul here, and accepting help is desperately needed. Getting angry is very understandable but it doesn’t get you anywhere. I still have some complete bummer idiot friends and family, I’ve learned to accept them warts and all. And I’ve developed deep gratitude for those who’ve learned and come through in times of need. I hope you’ll find some of the same
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sp19690 Dec 2022
Can she cut the woman who told her she would rot in hell for cleaning up puke and crap out of her life?
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You're between a rock and a hard place with some financial interdependence that keeps you perpetually stuck as her 24/7 caregiver. I'd imagine you wish you'd seen this coming and not become so entangled as to be unable to change the situation.

Tell people to take a hike. People have no clue what your life is like and they have zero basis for trying to tell you how to care for your sister and that little bit of self care you're able to fit into the daily routine.

Simply put up your hand and tell them to stop, as soon as the launch into their baseless tirades. Or, ask them to write down their 'suggestions' and drop it in the mail, you get to reading it when you have time. Hand up the phone, block their numbers, walk away.

Pls find some support nearby for caregivers and allow yourself the grace of developing some relationships with others who actually understand your very difficult situation.

Ultimately, if completely unable to untangle the finances with one more very thorough review, incl possible downsizing, you have to start cutting these toxic ppl out of your life. God knows your plate is heaping as it is.

Walk away from these ppl, they can kick rocks.
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I see from your profile your sister has a Dememtia. So sorry she is so young. Is she on Social Security Disabikity? If so she hets Medicaid, right.? If not she should be on SSD. I know u don't want to get into why she can't get Medicaid. Did she not pay into it? Was she not married to someone who did pay into it. My Mom only worked 3 yrs or so and quit after she had my sister. Her SS and Medicare was based on Dads earnings.

Have you spoken to Medicaid about your sister entering Longterm care with them paying. This is too much for you.

Try placing small bowls if vinegar around, out of sister's reach. It may help with the smell.
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BurntCaregiver Dec 2022
@JoAnn

She qualifies for Medicaid. Maybe not Medicare if she never worked or married and had a spouse who did.
If she's not on Medicaid it's because there's either money set up for her that can be drawn on or she isn't a legal American citizen. Some states actually let illegal residents go on their Medicaid program, which of course they should not but do.
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You deal with these people by using one of two responses. You may even want to use both.

Response #1:

Shut the hell up. I don't need your suggestions and or your peanut-gallery comments.

Response #2:

Don't tell me. Show me. If you can do a better job then I'm doing then please, be my guest. Go ahead you take over. If not, shut the hell up.

Try these out. I think you'll like them. Also a little FYI. Your sister is not a minor. You would not be responsible to pay for her care if you put her in facility care. If she is disabled and does not qualify for Medicare then she is on Medicaid and probably SSI disability.
Medicaid pays for residential care.
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I've been through this too. It was a relative who thinks she knows everything. She kept urging me to do ridiculous things, like feed dad mashed potatoes because someone says that cures cancer. He didn't like and wouldn't eat mashed potatoes. Then there were demands about what he should be doing for recreation as he lay dying (which she wouldn't accept), cutting remarks that he really didn't have dementia and was just bored, and on and on. She wasn't interested in helping and never did. I bent over backward to please and appease her. I ignored the accusations and hurtful things she said to me and to others about me. We ended up estranged anyway because I couldn't stand her anymore and didn't want this toxic person in my life ever again.

What you're describing isn't unusual, and you have to realize that you're playing a long game. If it's making you sick, like increasing your depression and anxiety to the point where you're not taking care of yourself, you may need to make it a short game as far as they're concerned. I gather you've already started that. Would it be possible to cut these toxic folks out of your life completely and replace them with a group of people who understand what you're facing and will provide wholehearted support? An Alzheimer's support group near you might be what you need. Good luck, and I hope you find a solution that will make you feel better.
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You should ask the nut case that told you that you would rot in hell for cleaning up like and poop on the Sabbath if she wipes her ass on the sabbath. What a religious nut case. So many twisted people using religion to justify their defective and insane thinking.
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I cant imagine your being able to take care of her for the next 10 or 20 years. Hopefully you have looked into getting her qualified for Medicare or talked to an elder care attorny to see how she can get skilled nursing home care without you paying for it.

What happens if you die or get sick? You may have money that would pay for her care if you died via an inheritance but eventually that would run out then what would happen to your sister?
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When my sibling visits there are a lot of suggestions and ideas to improve my
caring for my parents. I have learned to just say "That's great! You can take that on!". Nothing ever happens and I just shred the paperwork. It is not my job to jump up and complete every request. I think a lot of absent sibling suggestions come from guilt and their way of relief is to stir up trouble with some new senior service that will restore parents to their former glory. There are not a lot of family I speak to anymore. At first it was I was absolutely crushed but not so much anymore. I am starting to enjoy my new life free from crippling co-dependent family relationships. When my parents ask about them I just change the subject.
You might want to contact APS and the Alzheimer's/Dementia associations in your community. Maybe a eldercare attorney?
Good Luck! Put yourself in the equation! Take care of yourself!
I wouldn't want to live in a vomit/urine/poop smelling house either
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My sister definitely doesn’t qualify for Medicare or disability, our finances are too intertwined and she’s been unemployed too long. I did moderately well in life and saved quite a bit. Savings are enough to last the rest of our lives, assuming we are careful with spending. That means that for her to qualify for Medicare, I’d basically have to deplete most of my savings and hers as well…since she is mentally disabled there’s no way to unwind all of this. I’ve wasted money on several elder care attorneys only to be told the same answer. So, I’m on the only route that works for us…stretch out my caregiving until it become impossible to stretch the funds at last until Medicare kicks in. And hopefully keep the people out of our lives who make me feel inadequate and jealous of their picture perfect lives.

thanks for the suggestions, which I find helpful.
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sp19690 Dec 2022
I see she's only 57 so you have 5 more years of this. I am so sorry you are going through this it sounds like a nightmare. I don't know how you do it. I dont think I would last a week. I am really sorry even elder care lawyers can't help and offer you an alternative to what you are having to do day in and day out.
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Based on your post from June, you're dealing with a rather untenable situation with your sister that most people would not be able to manage at all. Not for a week, never mind years.

https://www.agingcare.com/questions/alzheimers-with-bulimia-anyone-have-ideas-on-dealing-with-these-475654.htm?orderby=recent

I think to accuse your siblings of having 'picture perfect lives' is to begrudge them THEIR lives because your life is so consumed with the 24/7 care of your sister. That she doesn't qualify for Medicare doesn't necessarily mean that YOU have to devote 24/7 to her care and management. You say you have enough money to last the rest of your combined lives, if you spend wisely, and I would consider you spending some money on in home caregivers to give YOU respite 'money well spent.' Or spending money on adult daycare for your sister to give you back your sanity which is hanging on by a thread.

To begrudge others their lives b/c you have an unfavorable one begs that you rethink that life now. Others who offer you suggestions on caregiving may be genuinely trying to help you, seeing how bogged down you are, wanting to see you experience some joy in your life. Do you honestly feel they are trying to upset you or anger you with their ideas? If so, block them on your phone or refuse their calls. If you do wind up taking a call or a visit from someone who offers you an unsolicited or insensitive remark, try telling them how you feel about that remark or better yet, ask them for what you NEED from them. Until they tell you NO to your face that they will not help you, you don't know for a fact that they are unwilling. And if the answer to your plea truly is NO, then find help elsewhere, by paying for it, so you're not asking for 'freebies' from anyone, feeling you 'owe' them for any favors.

As far as a person telling you that you'll "rot in hell for cleaning up vomit and poop on the sabbath, like every other day", I'd cut that person off at the pass. Block them on your phone and out of your life completely. You need that kind of nonsense in your life like you need a hole in the head, fgs. I had a cousin who drove me crazy with BS when I was caring for my parents, so I wouldn't take her calls at all during the heyday of my stress. If I wound up talking to her and she aggravated me, I'd wind up yelling at her & giving her an earful, truthfully. Hey, you want to call me with BS, then deal with the consequences g/f.

Realize that you're in a very vulnerable position here where you DO need help, with or w/o "Medicare" kicking in to insure your sister. Figure out how to ease your burden a bit and find some joy in your life before the stress of all this kills you. Then what happens to your sister? Then Medicaid kicks in and social services places her in a Skilled Nursing Facility, in reality. I'd hate to see you become a statistic :(

Wishing you the best of luck setting down boundaries with the people in your life offering you useless suggestions on how to better care for your sister.
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sp19690 Dec 2022
I didn't realize she had bulimia and is intentionally throwing up every single time she eats. I honestly dont know how the OP is managing the constant cleaning up of puke and feces multiple times a day.
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You could learn to tell them to just stop flapping their gums and come do some boots on the ground help or keep their opinions to themselves.

If you are sitting in front of them you could have some fun with it. Like when they are telling you the obvious, start staring into space and drooling, then tell them something like "jeeze!!!"""! I wish I would have thunk of that. You must be edjamukated real well. Can you show me how to do that there thingamajig you just said??? Huhuhu?" Maybe, just maybe they will get how stupid they are treating you.

Or you could have a list of things that they could do, if they really want to help.

Finding a way to not let others stupidity and careless hearts adversely affect you is the only solution. Isolating yourself will not help you and your sister doesn't know the difference.

I would encourage you to NOT let her go to the bathroom alone after eating anything. Long held habits die the hardest with dementia, so she needs you to be the tough guy that is stopping her long practiced self harm. I, personally, would find that battle easier then cleaning up her vomit all the time.
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Maybe turn it around and say -- you are right, if I only had a few hours to myself, twice a week, it would help me think this through. Are you volunteering? Either they put up or shut up. If they don't shut up, repeat the statement - if I only had a few hours to think the problem through, would you help me? And just keep it up for as long as they do.
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Good Morning,

Exactly what you mentioned mid-way through I was thinking why don't they just roll up their sleeves and pitch in.

You can't leave any type of urine, upchuck to put it politely, you have to keep up with everything. The stench would be unbelievable. There are no days off when someone vomits, etc. That would be the worse thing you could do. The laundry needs to be kept up with as well.

No one wants pity they want an extra pair of hands, services, gift cards, etc.

In all honesty I don't see how you can keep up with this pace solo. Is there any type of day respite programs in the area that offer transportation? You need a break.
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The old saying: friends in need is friends indeed. It sounds like someone offers something you don't need, which often involves "advice" and "judgement". Listening to other people's needs and offering hands-on help accordingly are higher level expectations. So I agree with you to reduce this kind of interaction with your friends for the time being and start to look for more practical means to deal with your difficult situation, unless you prefer to change others or feel bad by others.
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You will never be able to stop unsolicited advice! Most mean well, some just can’t resist.

Join a caregiver support group. Many are online…it really helps. Venting helps, listening to others with similar issues helps, and since they been through stuff, there’s usually good advice.

You already know the advice givers don’t make any effort to help you. I’d say the next time someone starts in, just look them in the eye and say “I do need help…where could you jump in - cooking or cleaning? Maybe going with to Drs appts or running errands? ” Doing that once or twice will probably eliminate them giving advice.

As for not cleaning vomit etc on the sabbath, I can’t even wrap my head around that. You can’t spend the day in filth or stench.

You may want to deal with your other sister on a very limited basis. If she shows up or asks to see you, just say “we’ve had a major accident over here and you will not do well with the current state. I’ll get back to you later.” That should put her off. Say it every time she calls. If she says why can’t she see you, just say if she comes to help out fine, otherwise you just don’t have the time.

A support group of experienced caregivers can give you what you need. I belong to 3 groups! They are volunteer organizations that may be able to give you some time to yourself. They can spend time with your sister (most volunteers won’t clean or do big stuff). Perhaps hiring someone 4-5 hrs per wk will take the edge of cleaning. Check cost in your area.

Or say point blank to the advice givers, please take this rag and clean up what’s over in the corner, while I give my sister a bath. I guarantee they’ll either run or help. What’s the worst that can happen?
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I think the first question that sprang to my mind is why does your sister vomit so much? I’ve never heard that this is a symptom of Alzheimer’s. Has her doctor addressed this issue? If you could get some help with that perhaps it would make life a bit easier for you. I’d also find out about getting some respite care so you have at least a little time to yourself. Many times people qualify to have some financial help with that even if they have some income or own property. Is there an agency in your area that helps people with disabilities? As for cleaning up vomit on sabbath, I seems to remember some famous words; “if any of you have a sheep that falls into a pit on sabbath will you not reach in and pull it out?” Please ignore these people who try and give advice. They would have to step into your shoes to possibly be able to understand.
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Ignore them. Tell them everything is under control and you do not need their advice
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Know you are doing the best you can. And with the right advice or suggestions, PERHAPS the situation can improve for you and your loved one. But what is the right advice, and why do people offer their advice? Check out this article regarding advice givers: https://www.verywellmind.com/whats-behind-different-types-of-unsolicited-advice-3144961. Also check out Leslie Kernisan MD, Better Health While Aging & Geriatrics for Caregivers Blog at https://betterhealthwhileaging.net/about/. Lots of practical information for caregivers can be found at this blog. Finding an outlet to care for you-either through a support group or a therapist-will do wonders for you. I wish you peace of mind and that you learn to understand that caregivers cannot not know everything.
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Tell these unhelpful people calmly and clearly "Unless you are willing to pitch in to help me, kindly keep your opinions to yourself as they are not helpful." As for others seeming to 'flaunt' their carefree lives; say, "I'm glad for you, but I don't have energy to visit with you now."

If you are financially able, perhaps find a placement for your sister, or full time live in help so you can have relief yourself.

All the best; you don't need advice, you need real friends, real support.
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KNance72 Dec 2022
Exactly
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I know from your place at the time this was impossible but as I read the sabbath statement my first thought was to laugh and simply say “ I think god will overlook that when he’s weighing the reason I do it” or “maybe you shouldn’t have said that out loud”. But people like this aren’t worth the frustration. All the suggestions about how and what you should be doing however, that’s an ongoing issue especially with certain people. I like to believe they actually want to help and think they are but I know that’s likely wishful thinking. My responses are;
“Thanks I’ll give that some thought”
”This is what works for me”
For your sister;
”Your right it sounds like I would have enjoyed that party, if only I had someone to look after Sis”
”I wish I had some help so I could enjoy some of those things”
”I wish I had the ability to take the time to enjoy myself (my retirement) the way you can”
”If I hadn’t moved away I might get invited to parties by friends too”

Again I know it’s hard in the moment to remember to let the comments roll or answer them by putting them in the right place but try to give yourself credit for the giving, loving, responsible, knowledgeable and special person you are. Don’t isolate yourself by cutting people out of your life, cut them back down to size instead and encourage the positive things about them that made them a part of your life to begin with. We all have pluses and minuses, it’s the balance in each relationship that’s important.

Now, knowing I’m doing the same annoying thing and that you have probably already thought of this I’m going to say one thing about possibilities. Since you have recently moved cross country have you looked into Medicaid (not Medicare) for your sister in the new state? Requirements can be very different state to state and even when one doesn’t qualify there are often programs for people who almost meet the requirements but don’t, again differences state to state but worth a little investigating. If the problem is intermingled finances maybe you can change that for applying purposes and wait a year or five to apply.

Hard much of the time but my brother is able to laugh most of the time at our moms frustrations (when she is being frustrating to him) and it reminds me to do the same, somehow it keeps the mood lighter for both my mom and us so I find myself less frustrated than I have been in the past a chunk of the time. Don’t get me wrong I still loose it sometimes or scream when I’m out of earshot but finding the humor in people thinking they know better or making a ridiculous suggestion even if you don’t laugh out loud just internally helps me deal a lot.
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You did the right thing by cutting off the obnoxious sister - really it’s a isolating experience I just tune negative people out and don’t engage . If someone can’t be positive and support you and are toxic cut them out even if they are so called family . They are not your friend - friends help each other - they don’t use you .
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Unfortunately you can’t shut them up. It is part of their personality to give unsolicited advice, yet not offer to help.

However for you, I would see if you can find an agency or church that can lend you an empathetic ear for a few hours each week. It is just to sit with you or call you up so that you can let off some steam.

These people have no idea how much energy they suck from you.

From a different perspective, are there safe topics to talk to you about? Maybe you can move the conversations to those topics before these people start their unsolicited advice.

Also, don’t expect people to listen to your woes without offering their version of solutions.

The trick is to control the conversations….like you don’t already have enough to do….
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Ignore them. Do not spend your valuable time listening to them.
Redirect the conversation or walk away with a smile and something like, " good to see you" or some other neutral statement.

I hope that you have a competent counselor, faith based or not, for your own grief and mental health support.

And, I am sure that you have already considered and put things in place for your sister's care should anything happen that you cannot continue as the PCG; at this rate, she certainly could outlive you.
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I ignore them and cut off all unnecessary communication with them. I have enough stress from caregiving full time than to sit and listen to their idiotic advice. Until they walk in your shoes, they’ll never know what you’re going through.
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Block, delete, mute. You are it. No need to have a conversation with them.
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yungstdaughter Feb 2023
Mute is a Fabulous option!
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If these are in person comments you can say..
"I thank you for your concern but I have a system that works for me."
"If you would like to help out could you come by at 1:00 on Wednesday I would love to get to the store and I could use someone to sit with "Betty" while I am gone, she would love some company"
"If you would like to help out there are a few things that I need from the store would you mind picking up a gallon of milk, 2 dozen eggs and the bag of chocolate chips that is on sale"
If these are phone calls...then it is...
"Gee I'm sorry but the timer on the oven is going off, I need to get the cookies out, thanks for calling" HANG UP.
Don't answer let it go to voice mail.
Email...don't respond delete.
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NinjaWarrior3 Dec 2022
These answers are great!
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“Oh, why do you ask?” “If you think it can be improved then step in and do it” “I appreciate your sharing but I have a lot on my mind.” “God says caring for her on the Sabbath are life preserving actions so it’s okay.

Caregiving can be very isolating. But it’s especially galling when those buttinskis have no appreciation for you taking the job out of their hands. Unhelpful siblings seem to be an important issue for caregivers. Can you join a caregivers group online? Something to think about.
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How about “I don’t have time to talk now. How about you come around to my place tomorrow morning, and we can talk while we do some jobs together?”
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Caregiver2719: Perhaps you should spell out exactly what your siblings can do to assist in caring for THEIR sister, who has Alzheimer's and bulimia.
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Your sister’s problems sound profound. Please see if social security’s disability program might apply. That would include medicaid. Good lick n
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