I have a great deal of respect for you folks here and am trying to come up with some suggestions to help my friend of many years who lives far away and is in dire circumstances. I’m hoping some of you have some knowledge of some way I could offer her some constructive help/hope.
Here’s her situation in a small nutshell-
She has been housebound from MS for several years. 1 1/2 yrs ago her mother died.Her mom was her “legs”- doing all the shopping, etc. plus her best friend and emotional support. Since then she has quickly gone down hill, monetarily, physically and mentally. Without her mother’s support she has had to go on medicare. Within the last few months she has been near death several times- once from malnutrition! She has no family to help her and her doctor just released her from the hospital, yet again, but says she must have 24/7 care.She says the only way she can get that is to go into a home for the elderly and dying(she is only 51) and her dr. does not want that for her, especially from the mental aspect for her.Medicare has told her they will only pay for “skilled care” as in a nursing home. The doctor wants her to have “assisted living”.She says medicare will not pay for that.
Do any of you folks have any expertise with medicare, or state programs(NC)or know of anyother programs that might be of help to someone in her situation?
Any suggestions of where to look for help for her would be great…
She is such a brave soul, I would love to be able to offer her some ideas that might allow her to stay in her home instead of being forced into the nursing home.
Thanks.
If she is eligible for Title XIX, there may be many services that could be provided for her. I don’t know the details, but both my parents (long ago divorced, remarried, one widowed, living in different cities) are on it and have found it to be a godsend.
In general, phone calls to the government social services agencies in her area might turn up some resources/programs.
Best wishes,
Jerry
Thanks for the suggestion Jerry. I just sent her the question about elligibility for Title XIX ( I have no idea what that is, but she may). I do know she said she’s been on the phone all day with various agencies and keeps getting a “no” for an answer. I would assume this is with medicare or some state agency but really don’t know.
Sometimes you have to wonder how life can be so terribly unfair.
As some will recall, a while back I had to spend a couple of months in a convalescent center (i.e. nursing home with physical therapy). It was not a great experience. Essentially, I was chair-bound, no one could take care of me due to medical stuff and I couldnt take care of myself. The feeling of being trapped is perhaps illogical but can also be stifling, in part because you’re surrounded by old folks who are in various states including Alzheimers and dementia and thus have no one with whom to interact. fortunately, I’m a reader, game player and music lover, so I was able to provide my own entertainment. I was also lucky enough to find a couple of older folks who were physically infirm but mentally sound and I spent a lot of time around them. In one sense, it was even good to be in a position to hear their experiences while they were still around to share them (they’ve since passed on).
I’m not saying this for any need of my own but to lay the groundwork for what I’m going to say next. A nursing home is confining and can be stifling, but it can also be what you make it. Sadly, it sounds like your friend has no choice with regard to having to live in a home, but she DOES have a say in WHICH ONE. Some places offer more activities and options than others. Some facilities are better than others at allowing the patient to set her own level of assistance, i,e, they’ll let her do what she can/will for herself and only help with the other stuff. As one nurse put it to me, patients who want to do what they can for themselves are the staff’s favorite patients. And this is especially important - NOT ALL SKILLED NURSING HOMES ARE JUST “for the elderly and dying”. Convalescent centers often have both custodial patients and others who are recovering from disease, or injury and are thus at least intellectually more active. She, or her friends, needs to start researching homes within a reasonable distance. Depending on where she is, there are state agencies that keep records of complaints and inspections. There are also patient advocacy groups which can provide informal evaluations and recommendations. Even her doctor or his staff might be able to suggest which facilities can provide the most appropriate care.
Horribly, there are also facilities that just warehouse people. The other side of research is to avoid those at all cost.
It doesn’t sound like there are going to be any perfect outcomes, but that’s not to say that it has to be all bad.
I hope things turn out acceptably for her.
I’d like to second what Chuck has posted and point out that not all nursing homes are created equal. My wife works in one that is a respectable, caring place. Some of the residents there are parents (one is actually a spouse) of the workers, and to watch the way the place runs, you’d think that most everyone is a family member.
Not to say that it’s a decision to be taken lightly, or that it’s the first choice of the residents to be there, but…I’ve come to realize that, when it’s time for 24/7 care, it’s worth shopping around.
I hope your friend comes across an option that she’s comfortable with.
Jef
When I was diagnosed with cancer, I found that looking on the web provided some good information.
I did a search and there is a national MS Society with many local chapters. Go to the main site and enter your friends zip code (if in the USA) for a chapter nearby. They maybe able to help with every question. Just let your friend know that they are not alone in what they are going through, that others have walked the same path and can offer direction. Good luck.
http://www.nmss.org/
Mike
If she’s been hospitalized or recently released she should check with the hospital social worker. It is their job to help arrange after care for patients.
They usually have a lot of local expertise regarding what is available. They can at least save your friend time exploring homes and situations that won’t meet her needs. A good hospital social worker will not only now what services are available, she may know how to get around obstacles, apply for specail exceptions due to local conditions or resources. She/he will often know which places have waiting lists and how long they are. Your friend may want to have her doctor make the referal to the hospital’s social worker. He can then forward her medical history to provide the social worker with the details of your friends condition. The social worker will also be able to assist in filling out the multitude of forms needed to affect services, which could be a real boon for your friend with MS.
I knew that old BS in Social Work would come in handy…
Let us know how it works out, and in the mean time …
Thanks a bunch. I knew you folks would have some good ideas.
I’ve sent her all the suggestions and she’s looking into the title 19 stuff.
Also , looking into what 's in Conn. since she would at least be near her sister up there.
I’ve also offered to take her 12 yr. old skye if she should decide to move north. So she doesn’t need to worry about her canine friend.
Again, thanks again. 
Sorry this is a little late but I’ve been out of town for the last couple of days. I don’t know about your state, but at least here in Wisconsin, besides Title 19 (commonly known as Medicaid) there’s something called COP and CIP (I’m too tired right now to remember what they stand for). Title 19 I am pretty sure wouldn’t pay for assisted living either. CIP and COP are other government-funded programs that provide funds for people to either otherwise stay in their own home or go to an assisted living facility rather than a nursing home. As others have said, her county’s human service agency should be able to give more information on that.
Right now with all the budget crises and cutbacks local and state governments are facing, these programs are getting less money and therefore able to help less people – shame really.
I also agree with those who said that nursing homes aren’t all the same, many are great places. If she does go that route, be sure to do research!
the best possible situation would be to find a close friend or family member whom she could live with and they could provide the care and support she needs. If that’s not possible, well, like it has be said, hop on the phone and harass the bureaucrats until they do something.
Another sorry I’m late note here, but I assume she has applied for Social Security Disability? Some folks don’t know it’s out there, but it does provide some financial assistance for the insured (Title 2) as well as those who are disabled and in dire straits financially (T16).
I agree with folks about a nursing home or assisted living situation. MS can sometimes go into remission. I know a doctor who was essentially quadraplegic a year ago but who is up and walking now after a new therapy. I also have a cousin who’s never had much in the way of improvement with her MS and just seems to slowly slide downhill. I guess I see starving to death because of an inability to care for yourself as a much worse situation than living in a nursing home - especially since she can always hope for a remission.
Eric
Again, thanks to all for your help. I am relaying your suggestions to her.
Jayhawk makes a good point. Federal disability, esp SSI, isn’t much, but it might help. I have very good sources of information in that area - if your friend doesn’t have it and has questions, feel free to ask.
I just heard from her, she’s entering a facility tomorrow for a while.
Thanks all.