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Old 02-21-2016, 05:09 PM
Location: Out West
22,624 posts, read 16,748,672 times
Reputation: 26200


Originally Posted by kitty61 View Post
You sound very young and inexperienced...
Phone around and find a social worker. They know where all the services are. Get government home care workers to come into your house.
I don't know how old your relatives are.I can't believe you haven't tried to read up about your BIL's illness !!
Help yourself so you can better manage your life. Contact a community medical outreach center, call the government, call the hospital, go to the library, Google, see your doctor, and so on.
Does your sister go to any support groups and meet other people with MS. Among them will be someone who knows how to use the system to get help.
It is not uncommon for the ill to be 'stubborn" about releasing control over their life just like you don't want to do. The chores you describe are part of your "duties" if you are living with them so I would ignore her complaints.
What do you mean you can't believe I didn't "read about" his illness? IT JUST HAPPENED!

As for her and support groups with MS...yeah, once in a great while she does.

As for "duties", um, no. I pay. I am not living here for free. I use my own stuff, I don't make them pay for my stuff. My life is managed.

Where are you getting all of this? What is with these ridiculous assumptions on your part?

What I do, I do it to help her because she can't do everything, but I'm not her official caretaker, I'm not obligated to do anything. I do it because she needs help, and she's my sister...despite how much she insists that she can do everything on her own. Of course I'm "inexperienced". I have not had to deal with this kind of stuff in my life...why would I have known?

Originally Posted by germaine2626 View Post
Permanently disabled, and qualifying for Social Security Disability, can be any number of permanent illnesses or disabilities that mean that you are unable to work. It can be due to having MS, or schizophrenia, or brain damage or any number of things.

In fact, you can be severely physically challenged, for example in a wheelchair paralyzed from the waist down and be perfectible capable of working fulltime and thus not eligible for disability.

OTOH, you can be 100% normal physically but due to a Traumatic Brain Injury you may qualify for disability.

Of course, none of us know your sister, but if she is physically unable to work due to her MS, it is likely that she would qualify for SSD. Now, it is not unusual for it to take two or three years (if not longer) for a person to qualify once they apply for SSD. If you are accepted, you do receive back payments, but it can be pretty difficult to survive in the mean time.

OP, I know that this is very overwhelming to you, but just hang in there and be the best sibling that you can be & help the best that you can.
Thanks. I just feel like I'm not doing enough, and I guess part of that comes from the very fact that none of us can do a single thing about it right now. All we can do is just sit and wait...which I don't like. I don't like that I can't "fix" things. My sister is the same way which is why she goes in to "control" mode when she is in a crisis...and this is definitely a crisis to her.

Her husband is everything to her. He has been with her through everything...more than just her MS but not for this forum. Recently my sister and I were talking and she told me that his friends or acquaintances will ask him why he stays with her when she has MS, that he should divorce her and life a free life. People are such twits I can't even stand it. Well, I wonder what those blow hards would say now?! Because I can assure you, she's going to do everything that she can, beyond her abilities, to take care of him. I want to relieve some of that burden because I KNOW she's going to do it. I'm not stressing because of me, I'm worried about HER, because I know her.
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Old 02-21-2016, 05:30 PM
13,793 posts, read 14,609,604 times
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it sounds a bit like your sis has always been a take charge kinda gal, independent and able to take care of herself. as she said it is so hard to admit to yourself you are no longer as capable as you once were, so you work even harder. why not let her be who she is in that area even knowing it wears her out. when she gets into busy mode ask her for "the list" of what she needs to "accomplish", then tell her while she does task A you will start on B and already were thinking of doing C anyway. head her off at the pass so to speak while allowing her to remain capable. same thing with they wanted to treat you to the movie. it makes them feel good to treat you.

you should also try not to worry even though justified, about her wearing her self out. you can't change how she copes or her need to stay busy. just try to keep helping and loving her along with what you do now, cooking cleaning.

is there anything you can organize so it isn't so hard for her to accomplish? like you said you do things before she needs to do them so she can't worry about it, it's done. you're a good sis
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Old 02-21-2016, 06:05 PM
Location: Its easy to be a perfectionist when someone else is doing all the work.
2,231 posts, read 5,452,927 times
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Originally Posted by Windwalker2 View Post
I am confused by what you say here. Social Security Disability (SSD) has nothing to do with household income. If your sister worked enough quarters, and now is not able to, then she is eligible for Social Security Disability, if she has worked recently. I can't remember how recent it has to be, but you can go to the Social Security website and check that out. And I suggest not waiting longer to do that.

Supplemental Security Income (SSI), which is in addition to SSD, does have income limits.

Depending on how well he recovers, your BIL may also need SSD and should apply sooner rather than later because it takes a long time to get it. If he has long term or short term disability from work, then there might be an offset for SSD.

Maybe your sister will need her own home health care, but insurance should cover some of that.

The hospital social worker may (or may not) be able to help you find services to help out.

I suggest that one task you can perform now is investigating all the resources available to help in this situation, however it turns out.
Windwalker's info is correct. Ive been thru this with my Huz. Just because your Sis has too much household income to qualify for SSI doesn't mean she cant get SSDI. Can you tell us how old your Sis and Bil are. Maybe there other stuff we can think of to help.

Hopefully she paid into social security and will qualify for SSDI. Heres a link to see if she has enough work credits. https://www.ssa.gov/planners/credits.html#&a0=2

This stuff can take a while so she needs to apply now if she qualifies. She can do this online. If you have her info you could get it started for her. She will probably be denied. Most people are. Don't let this discourage her. If you get denied Social Security will provide you with a list of attorneys to help you file an appeal. You don't have pay them upfront they only get paid if you win. Their fee is limited to 25% of the past-due benefits you are awarded, up to a maximum of $6,000. BTDT with my HUZ. If the attorney takes her case she stands a good chance of winning. They wont waste time on you if they don't think you will win. They only get paid if you win. Otherwise they get zip.

In the mean time do not pay rent. This could be counted as income and may disqualify her from some programs. Also don't say youre there to help. The more she has the less help she will qualify for. Ive seen this happen to other families.

Hang in there. Even if she doesn't say it Im sure your sister appreciates you big time for holding down the fort while she concentrates on her husband getting better.
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Old 02-21-2016, 10:32 PM
Location: Out West
22,624 posts, read 16,748,672 times
Reputation: 26200
Ok...tonight I got a whole lot of new information. It is worse than I thought. I thought it was just going to be a week or so in the hospital, and then a month or so of recovery...I was way off.

Here's what I know:

When he first came in, they didn't have that contraption thing he's in now. He was on a regular bed, and that's when his oxygen levels were even lower than what I thought they said. They were at 15%, and they gave him a 30% survival chance. Apparently a nurse at this hospital, who is so good that the docs listen to her, insisted on getting this contraption bed thing shipped in from another state. I was told normally it takes about a month, but it was here within a day, and to be honest, that is really why he isn't dead right now.

So this bed/contraption thing turns him. It can turn 360 degrees, but he doesn't do well if they turn him to where he's on his back...his oxygen goes back down really, really low, so they are slowly turning him from prone to one side, back to prone, to another side, and each day those turns are a little bit more so that eventually he will be able to be on his back.

He's on what my nephews call the "Michael Jackson" drug. That's apparently what is keeping him out right now. Which I think is good because I can't imagine being awake being stuck in that contraption. He is still paralyzed, (induced), and he is on life support in the ICU.

They said pneumonia at the start, but they are running all kinds of tests on him. One test they got back confirmed that it's not pneumonia from the flu...apparently there's several types of pneumonias, (how it's contracted), which I did not know. They are testing to see if they can find out which type, and again, also testing for other things just in case.

My sister is at the hospital constantly, and I usually get her v/m although she did just call. Just asked her a few questions, ask how she's doing...she's sick, too, (meaning not the MS sick but some kind of bug or something), she's not sleeping a lot, which bothers me, she's not eating a lot, which bothers me, but she's going to stay there, of course she is.

Her college kid is home for a month, and so I talked to him tonight, plus another family member that was here.

Tomorrow morning they will have results of another test that they took, and depending on what that says, there will either be more tests, or there will be an answer.

Prognosis: The faster he gets off of life support and is breathing on his own, the better. The longer he's on it, the worse his chances get. No difference between the last time I wrote about how he was doing to now.

WHEN (because I'm thinking positive) he gets off of that, his recovery, they said, could be a couple of years. YEARS. Not a couple of months like I thought, but years. I asked where he would be during that recovery and the son told me probably at the hospital, (or some other facility, but apparently NOT at home). A couple of years. Fricken years! The reason is because his lungs are so damaged, it's going to take him that long to get back to "normal".

Further, because of the nature of his job, chances are good he will not be able to go back there if his lungs are that damaged - the job will exacerbate problems. So that really makes things crazy.

I do have to say something here for those who aren't quite understanding everything in this family dynamic - I have not known my sister my whole life. I've known of her my whole life, but I have not known her my whole life. I've only known her since 2001. This past year is the first time we've ever seen each other in person. The "why" of it all is not for this forum, but that may explain why there's so much that I do. not. know. when it comes to what they have, what they need, what the insurance is, etc.

Now that's out of the way, what I did find out tonight is that apparently not only is there a lot of family, (many of whom I have never met), but her husband was so respected, I mean SO. respected in this community, that there's a LOT of people who are coming out and wanting to help. Apparently the boys (her sons) were given a free pizza from a pizza shop owner that they don't even know. The pizza shop owner happens to know their dad, and wanted to help, so he made a pizza for them so they had something to eat, and the pastor of my sister and her husband's church brought it to them.

I then found out that there's a whole ton more people like that between where we live now, and the city that they lived in before. A. LOT. of people really, really, really like this guy - my sister's husband.

I was also told that no matter what, regardless of what changes need to happen, every one is getting taken care of. Somehow, someway, all of us will be taken care of. We will be "ok"....we just have to get through the next couple of months, and then things will be "ok" as far as all of us having shelter, food, etc. because this family, that I am just meeting because of my sister, absolutely does not leave anyone behind. I'm not from that type of world. I come from a world where people say, "Welp, too bad for you, but we can't help you". That's where I come from. So I'm not used to what I'm about to see - which may actually be more stressful for me than anything else, but at the same time, I realize that with all the family, plus the eleventythousand people that apparently really, really, really like my sister's husband, they are going to be taken care of, anything I could possibly think of or research, things I have no clue about - someone out of those eleventythousand are going to know.

So right now I'm just doing what I've always done which is clean the house, and I'm also taking care of her pets so she can stay at the hospital and not worry about having to come back here to feed them and let her dog out, etc. I also got the ok to make the food. (A victory, you have no idea.) So that's what I'm going to do. Except for their bedrooms, which the boys can clean their own and my sis is very picky about her room so I'm not even touching it, I can take care of all the other parts.

College kid and my sis will be discussing financial stuff tomorrow. I threw a few things out there because of the information that you all shared, (thank you!!) and I offered a few more ideas as well.

But at this point, we just have to wait for test results. They said it was pneumonia when they first went in to the E/R, but the docs are testing for a number of other things, too. So...we really don't know what is going to happen. There is still a chance that he won't make it...which - well, not even going there.

Whatever other things you all can think of that I can throw out there to her, let me know. And we also have to figure out what to do for the next few months...then things will be a bit better financially, I've been told. Apparently college kid has some plans but we have to wait for summer for those. So, get us to summer, at the very least. Not sure what the heck to do for the next few months...but apparently that conversation happens tomorrow.

I'm exhausted. I can't even imagine how my sis is doing. I just hope that she doesn't push so hard she ends up taking up a bed in that place as well.

Last edited by Three Wolves In Snow; 02-21-2016 at 10:44 PM..
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Old 02-22-2016, 08:41 AM
Location: West Michigan
12,358 posts, read 7,729,971 times
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I know you want to hold on to the hope that your brother-in-law can pull out of this...even it it takes a year or so in a nursing home/rehab. But you also need to be prepared for the fact that he may never be the same. The longer he has low oxygen levels and/or has a machine doing his breathing the stronger the possibility that he'll have some degree of brain damage. That's what happened to my husband when he was in a very similar situation due to pneumonia. He also had bad lungs going into it.

As for your sister staying at the hospital 24/7...that can be far less stressful for her than being at home, not knowing what is going on. Your brother-in-law may even have a pull out-bed in his room so she can sleep at night. One thing my in-laws did for me when I was in your sister's shoes was to bring me well balanced lunches and see that I ate it. Another thing you can do for your sister, if she's not already doing it, is to send her a small notebook (5x7 will fit in a purse) and encourage her to start writing everything down. This is going to be a long haul and she won't be able to remember names, dates, tests, doctors, phone numbers, which friends/family offered to do what, and other resources when she'll need them in the future. An envelope pocket in the notebook for business cards is helpful as well. This is not going to be easy for any of you but, as I said before, you WILL get through it! Just take it one step at a time. You are helping more than you think just by making sure the house is kept up and the pets don't suffer without your sister and brother-in-law being there. I would have really appreciated that for my dog, when I was in your sister's shoes.
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Old 02-22-2016, 08:52 AM
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And you can be a source of stability and support to your sister's children. Even though the college-aged one is technically grown up, they must both be scared out of their minds, although they may be putting on brave faces for their mother's benefit.
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Old 02-22-2016, 10:30 AM
2,837 posts, read 4,284,130 times
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Originally Posted by Three Wolves In Snow View Post
Yes, he's on a ventilator. He's in some sort of contraption, still paralyzed (induced), strapped to some weird bed that moves him so he doesn't move, and he's not conscious. They have him prone. At prone, he is doing better, but if they try to turn him any other way, his oxygen goes down below 30%. I don't know much more at this point.

Now you're getting it, but where would he go? Part of me thinks that would be a much better idea...but I have no idea if their insurance covers that? I have no clue about what they have or don't have.

That type of bed is used in the hope of preventing bed sores.

When he is cleaned by medical staff they should be keeping a sharp eye out for any bed sores. Be sure to question the nurses & doctors about bed sores. The skin is an organ of the body & can deteriorate rapidly under these conditions.
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Old 02-22-2016, 11:25 AM
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The cost of a nursing home is real expensive but also a social worker should have some answers for your sister. Also they will have people who are trained to help him recover.
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Old 02-27-2016, 08:13 PM
Location: Out West
22,624 posts, read 16,748,672 times
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An update:

He's been taken off the weird bed that turns him around, he's on a normal bed, able to be on his back, is awake, but still got a ways to go. All that happened today.

According to my sis, she's been getting a lot of carp from family who have been blaming her for not taking him in earlier. (She tried, he was the stubborn one who didn't want to go.) And she's been talking to his job because the job will not release his paycheck to her because she doesn't have power of attorney. To which she responded that he was in a coma...how was he going to sign anything.

Anyway, with him awake, he can sign pieces of paper now. Geez.

I don't know too much about Power of attorney...I have used it when I was in the military. Actually, I was going back stateside and rather than ship my car over, I opted to sell it...but I didn't have enough time. I signed over a power of attorney to someone in my platoon so that they would be able to sell it for me. Thing is, if I remember right, it only lasted a month.

How long do these things last? Are there different types for different situations, meaning, duration?
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Old 02-27-2016, 09:43 PM
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happy that he is doing better! you are a great sister i wanted to thank you for your service and i wish i could give you a big hug!
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