How do you make it with little to no family to help?

Discussion in 'Fibromyalgia Main Forum' started by confetti11, Nov 14, 2010.

  1. confetti11

    confetti11 Member

    Hi all, I've been waking up literally in a panic about this for a while now and feel really alone thinking about it. I know people here can relate. I've been dealing with CFS for 10+ years...working really hard on my health and moving in and out of various states of wellness. (From nearly homebound to operating at 90%.) I'm 40 and my parents (fortunately) have always been very supportive...financially even as much as they can. But, I'm watching them become elderly (and now need assistance themselves) in front of me and it's just sent me into a tizzy. I have one brother, who up until now is completely removed from my struggle, if not downright hostile about it. So, I find no comfort there.

    For those who have faced doing this do you do it? Do you find people step forward to help at all when you're basically alone?? Other than my parents (and a few friends who help where they can but they are all busy with their own lives)...I've found that my struggle has almost been outright ignored when I ask for help. This is so hard WITH the support of my parents, I can't imagine how hard it is without that to call upon.

    I ruminate about this way too much and I know that's not helping anything. No one can predict the future but as it is, the possibilities for the future look very frightening. So how do you do it??
    [This Message was Edited on 11/14/2010]
  2. TeaBisqit

    TeaBisqit Member

    For your parents, there is the local Area on Aging, they have them in each state. Places that have programs to help the elderly. And all the senior centers, too.

    But for those of us who are younger and disabled, there isn't a whole lot. And it really sux. I'm alone. Totally and utterly alone. But they have a program to get someone in to help clean and stuff, if I really want it. I just don't because alot of the people steal and I don't want my stuff stolen. So I am struggling alone right now.
  3. kat211

    kat211 New Member

    I am not only dealing with this DD, but I have a whole buffet of plates full of issues and problems that I must address and take care of on a near daily, if not daily, basis. Like many others here, I am alone. My support network consists of the attorney I am paying to fight for my rights because of mold the previous owners of my house covered up, my hairstylist who I have managed to fit into my meager budget because I NEED to feel like a woman, and the doctors I pay to listen to me complain and write me prescriptions. The members of my support network who are non-payed are actually those I support - my son and our 5 loving balls of fur who fight over my lap.

    Cherish the time you have with those you love now. Do not stress about what may or may not be.

    If the time comes, and you find yourself alone, you will do what those before us and after us have found themselves having to do - you simply put one foot in front of the other and you go forward. Sometimes your journey may be slow and sometimes it may come to a pause, but you will go on.
  4. Chelz

    Chelz New Member

    Reading your post, I could not help but think of my situation which is so similar to yours. Both of my parents were pretty supportive. My father passed away in 2008 very suddenly and it has been me and my mom ever since.

    I am 45 and she is 81. Thank goodness, she is still able to do a lot on her own except for take care of the money and pay the bills. I live with her and I have to take care of my money and checkbook and hers as well. I have to make the decsions about house repairs, who will cut our grass, (I just can't do the grass or snow with my FM).

    I do have one sister, a brother-in-law and one nephew. My sister and I were always so close, but after my dad died, something happened, we are not close anymore. She never wants to hear of my condition and how hard it is for me to keep up the house, take care of my mom, work full time, and deal with my FM.

    I do have a few friends, but they have their own lives and families. I noticed a BIG difference in my FM after my dad died, all the extra things I had to do to help my mom, but no one is really there to help me.

    I do not think you are ruminating too much about this, you have a valid concern and it is 100 percent completely normal. I wish I had an answer about this, but I don't. But, I can say, that living with this condition, we are so much stronger than we think, and so are you. But, I do understand that feeling alone issue. I don't have kids or a spouse and in some ways that is good, but in other ways, it is not. Hugs to you, Chelz.
  5. AuntTammie

    AuntTammie New Member

    can't really give you advice rt now bc I am not coping all that great myself rt now

    ......most of my friends have moved away and/or disappeared as I have become sicker, my parents were finally starting to understand how sick I am and they did help some, but they recently moved 1000 miles away and my brother's family is living with them

    ....lost my Bible study recently, too, and had lost my ability to go to church several months ago at this point I pretty much have two friends who are there and they can only so do so much (& I don't want to take advantage of them and lose them, too.....and quite a lot of the time I just don't have the energy to be around anyone anyway....and the few times that I do I don't necessarily want those friends to become caretakers - that totally changes the relationship and I NEED friends)

    so, anyway, I totally understand your fears (oh and I am 38 - will be 39 in a couple of months)......but I can say that as bad as things are, somehow I still do manage
  6. artyreader

    artyreader Member

    I am in my fifties and alone alone alone as I had never thought I'd be, broke (Soc Sec'y Dsability/SSI--Ok for bare bones survival, but no more money for a real 'life') (after having worked all my life and traveled and had lots of friends, boyfriends, volunteer work, found work that I loved,etc.)
    About 15 years ago, started to decline (was in my late 30's and very active, vital, alive! and didn't know what was going on with my health--what was happening to me?!)
    As the years have gone by, I have lost a number of friends that I though would be friendships for life, and don't have much opportunity to make new ones anymore as getting out and being with people costs money (taxi fare, for one--I no longer can afford a car, and even if I did I no longer can drive at night, or distances or on freeways anymore--living in Southern Calif, and not driving is a very restrictive thing--it's like being a hermit(and I was a fearless and active driver for almost 20 years until fibro/cfs symptoms, etc whittled away at my driving)
    On the meager Soc Secy/SSI I cannot afford TV, car, cell phone or anything beyond this computer which it took me years to save up to by a 'low-cost' Dell. (Thank god for it!) My social life went from happy, lively, and fulfilling, to reclusive, misunderstood, and not invited anymore to things (even things that are close by, that don't involve driving).
    I have no family support of any kind; I am a pariah because I can no longer work, and even neighbors who have 'known' me for years don't get it.
    These 'invisible illnesses', especially the fact that they are chronic, make it extremely hard for people to have and/or maintain empathy for you. In many ways I have always been 'different' and a little bit of a rebel (but mostly a quiet, shy rebel who nonetheless loves to laugh and be with people I care about) but I am law-abiding, clean,non-drinker, no drugs, don't smoke, polite, interested in a lot of things, love to listen to live music, walks in the fresh air and enjoy the natural beauty of the area I live in, and I also take emotional risks and reach out to people,but it's a lot of effort and little to nothing in return.
    To me, the physical limitations and pain and fatigue I now live with are nothing compared with the isolation and unwitting 'shunning' and ostracism I've experienced through the years of these illnesses which have robbed my life of a lot of the meaning it once had--feeling useful and wanting to help but not finding a place anymore for what talents and desire to be of service may have.
    Most people are simply "in the fast lane" and most do not mean me ,( or other chronically ill people) any harm--they are simply clueless,have their busy lives, live in their own bubbles and when I try to explain, it sometimes makes it worse. . .
    I don't want to depress you--In a few years I will be in late middle age, and with no money (despite housing assistance, Medi-caid, etc) and thus no chance to do the things I really want to do (including just getting out of the house more and thus having chance to meet people) I have to make huge effort not to feel great fear and discouragement about the future.
    I wish us both, and everyone else on these boards, and, for that matter everyone else in the world, sustenance both material and emotional/spiritual/psychological, and people, even if it's just one, for starters, who at least truely try to open their hearts to understand and accept, support and truely care for us, exactly as we are. . .all the best to you and thank you for posting, that took courage!
  7. kellygirl

    kellygirl Member

    I know it's not much but did you know you are eligible for a free cell phone? My sister lives alone and was able to get one, has a minimum usage landline phone and sometimes you can get a few local channels with an antenna. She uses an older tv, which I do, too, and prefer to the flat-screens.

    But, just put a search in for a free cell phone, I know it's there, I am the one that did the search for her years ago and she still uses it.

  8. rockgor

    rockgor Well-Known Member

    Yup, the future doesn't look too bright, does it. These DDs take away so much
    including hope for the future.

    Have you looked around to see what resources are available where you live?
    I'd contact the various government levels and see if any can help you and/or
    your parents.

    Is there a day care center for adults or sr. citizens center? A place you could go
    to socialize, etc.

    Have you tried any 12 step programs? I went to Emotions Anonymous for over
    25 years. I would still go, but now I'm too old and feeble. Anyhoo, I found the
    meetings were good for my mental health and provided some social life.

    There are some card games you can play on the computer w/ people. Again a bit
    of social life.

    Maybe there are message boards or Yahoo Groups pertaining to some interest of yours: gardening, reading, music, etc.

    Yes, it's tough w/o the support of a family, but then some families aren't helpful.
    I moved away from my toxic, dysfunctional alcoholic family decades ago. As one of
    my therapists said, "You can't get shrimp scampi at McDonalds, and you can't get
    support and nurturing from some families."

    Best of luck

  9. ilovepink4

    ilovepink4 Member

    What we really could use is someone to open a chain of group homes for people like us, who are living alone and stretching their budgets and hungry for a social life....similar to group homes for the physically disabled....they pool their funding for pca's or hursing assistants and their funding for housing, etc and their social needs are met by living in the same home....

    it would be great to have little mini apartments so we could have privacy but have them in a huge building.....and we could have a cafeteria to feed us all....and social activities or outings planned with transportation for an old people's home....except it would be young ppl all the way up to the retired ppl....

    ppl with other health problems could tap into this too...too sick to work and support yourself but not too sick to give up on life....

    i wish someone would do this....i bet if I have thought about it, others have and someday it will happen.....
  10. kellygirl

    kellygirl Member

    When I first became ill I did go to the 12-step Adult Children of Alcoholics. It helped tremendously. I was able to take my power back, got over my fear of being in groups and actually speaking and being heard.

    It does become your family. I believed it "saved" me. I was able to get in touch with my anger, learned boundaries, not to try to control things I wasn't able to, let go.

    I was so grateful for the help.
  11. mbofov

    mbofov Active Member

    Lots of good posts. I agree with artyreader that one of the worst things about these DD is not the illness itself, but how extremely isolating it is. I sort of like ilovepink4's idea about a group home, but don't see it happening.

    I have tried to imagine a few times if I did not have CFS, how would I view someone else who did - and I do imagine it could be difficult to emphasize. But also, I think it's probably scary to others to try to truly imagine themselves in our shoes, with an invisible devastating illness with no treatment and very little help. It would be a nightmare to imagine. I have 2 sisters who get it, after seeing me be so sick for so very long, but it did take many years before they really accepted I have a very serious illness. My other siblings basically ignore it. So I do have some emotional support, although no actual physical help.

    I agree with what others said, try not to worry about the future. Worry doesn't help and it just uses valuable energy. I've started meditating again, and am very glad I'm doing it. I highly recommend it - it's calming and centering, nothing else like it. It can take several weeks of daily practice before you're able to quiet your mind a little. It's just very subtle but the effects are very real.

    Good luck to us all!

  12. rosemarie

    rosemarie Member

    I have always talked to my Mom, she has listened to me vent, helped me thru panic attacks,just let me tell her how bad I hurt from the fibro, and other chronic pain problems. But she is now 83 and her health is not good. she has been sick alot in the past few years and as time pass's she remembers less adn less, she does not remember things that we talked about just a year ago, Things that happened after my dad passed away she now tells me that they never happened even though her best friend tells her that she was there and knows that it happened.

    I have stood with her in hospital rooms while she yelled at me,m fought with me, she would cry when I left for the night so it was 4 am when I finally went to my room only to get a call from the nurse's telling me that she is having a panic attack. And I rush right back. Now when I get sick I have my hubby who hates hosptials and has never gone with me to one stayed by my bedside like I have done for him. He has no understanding of how pain works for me what it does to me. I know that sooner or later I will be with out my MOm and my hubby will do his best to try and understand how I am feeling. I can only pray that my daughters will accept me and my illness's and will let me talk to them, vent at them and know that I am ont angry with them. How I want them to belive in me , love me for who I am not for the mom who they feels is addicted to pain meds. I am up a creek with out a paddle. So I really understand how you feel I Hope htat we both can find some one eto share our lives with that awill accept us love us dispite all the issues we have
  13. confetti11

    confetti11 Member

    Sorry it has taken me so long to respond, I appreciate everyone's feedback. I was awake until the sun came up this morning worrying about finances and my parents' health. This feels like the darkest time of my life so far. My mom tries to be an eternal optimist and I really want to believe things will work out somehow, but on paper, it is really not looking good. Anyway...thanks again...

    TeaBisqit-I’m sorry you are alone right now. When I think about it and it feels like the most terrifying place to be. Alone is not so bad but alone and sick with seemingly no one willing to support you in the way you need to be, is terrifying and miserable. Thanks for the resources and I hope someone or something comes through for you.

    kat211-I loved your comment about needing to feel like a woman! So true. I’m so broke and there are occasional things I feel like I’m just going to wither away if I don’t treat myself to. I think it’s because being sick so much and struggling with all that goes with that is so draining. No matter the positive attitude we can muster up, just on a human level, it is sometimes just too much. I had a friend yell at me the other day because I was crying about what my options were going to be if I didn’t find a way to support myself enough financially. I really don’t want to move into a spare room of a relative’s house and feel like their guest, not feel like I really have a home. No privacy, etc. I was crying about how I felt like I had lost everything…no kids, no relationship and the possibility maybe of a future one because of health limitations, no career-just jobs I can manage, no money, no savings, no 401k, I can’t travel…on & on & on. I was just in a bad place and needed to say what I was feeling. Anyway, she said all of those things are material things and that at least I’m still alive…implying that I’m being materialistic and then she wouldn’t even listen to my explanation. Regardless, I told her before I hung up the phone that it’s not the same for someone who moves in with a relative out of choice or temporary circumstances…because they want to save money or a business failed or whatever that made them broke. This may be the rest of my life. At least managing this illness may be the rest of my life. Losing anything else at this house, my car, my independence, my privacy, is just another loss and I’m not being any more materialistic than anyone else. You want to show SOMETHING for your life and work after 40 years of living. Going backwards is hard for anyone and I think even harder for chronically ill people who may never have the health to gain any of what they have back. There’s a reason elderly people want to live on their own and keep their drivers licenses as long as possible. It’s a normal human reaction. Anyway, that comment about needing to feel like a woman (or sometimes I think a human!) made me think of that conversation. Thanks for your comments.

    Chelz-We should communicate somehow since we are in similar situations! Maybe we could be a support! My brother too is almost 0% supportive. He and my sister-in-law did offer that someday I could live with them but it comes at the cost of their questioning I’m genuinely ill (brother thinks this all could be psychosomatic…an attitude I refuse to let close into my life) and the clear message that he will never, ever support me in any way financially (except for the housing-generous but I’ll find anywhere to live but there because of his other attitudes.) I actually made an appt to meet with them and my counselor to talk about all these things because things have been very strained for years. They came but it didn’t go well really. And I felt on the defensive the whole time. I just refuse to suffer so profusely, work my butt off to have a shred of health that a typical person enjoys throughout life and then defend myself. I just say see ya to that. I’ve had enough.

    AuntTammie-I know we’ve talked before about how hard this is! I’m so sorry your parents moved so far away. And I know what you mean about needing friends. I feel like this illness has cost me so much in terms of all of my relationships!

    artyreader-Your post was very meaningful…thanks for writing it. It is so exactly what I’m talking about that I almost want to cut and paste it to support what I am talking about with family members now. To live at poverty level would be bad enough. But to live sick and at poverty level…what kind of living is that? My parents are really just at the end of how they can help me anymore…in fact it is infringing now upon their ability to take care of themselves into their old age which is additionally terrifying for me. I just so don’t want to burden them and I know I am, just factually. It’s such a mess sometimes I don’t feel like I can breathe. I don’t know how you’re supposed to even be able to heal with all this pressure. Anyway, thanks again for putting the reality of this into words.

    rock-Thanks for your input. I am just now beginning to get into what governmental agencies can provide. Up to this point we had been making it on our own, going way into debt doing it. I will check into the things you mentioned…and so true about just not being able to get support from some families. I find I just want to get as far away as possible from it…the attitude. It feels so toxic to me.

    Ilovepink4-I love your idea about shared housing. I have thought about something like this for years. I formed a non-profit last year to try to collect money to help people in our position…I would love to make that idea a part of it. I have been stuck on how to really get all the ideas I have off the ground, with trying to work and everything else. If anyone reading this would like to help me get a non-profit like this off the ground, let me know…

    mbofov-Thanks for your comments too. I’m sorry your siblings aren’t much of a support either. I just keep thinking my brother will come around but I don’t think that it’ll happen. I feel a lot anymore like I’m in a parallel universe to people whose bodies work for them. I just can’t compete and am constantly on the defensive if I even try to explain.

    rosemarie-thanks for your thoughts. I know I’m going to miss my mom so much. They say no one loves you like your mom…I’m feeling that more and more all the time. I can only hope for someone to come along to help me like she has. She’s still supportive, I still have her for now but just the normal passage of time…it makes you consider these things.
  14. deadtired

    deadtired Member

    For years I have been trying to tell my husband that something like what you have
    described is needed. He and I both have CFS and have struggled for approx. 20
    now. He owns and develops senior living campuses that include assisted and independent living apartments and cottages. Typically, congregate housing can get expensive. We wonder
    if you or anyone else knows what a typical CFS patient might be able to afford per month for living expenses. Do you know of any government program that would pay for chronically ill people and their
    daily living expenses?

    I love your ideas of the mini apartments, with cafeteria and activities, and I would love
    to see something like this happen. This type of support could enhance our lives and make
    our illnesses improve perhaps, at the least make it more bearable. At this time, he may soon have an opportunity to
    do something like this if he proceeds in selling his business. Any info that help me get
    him to pursue this is greatly appreciated.

  15. Adl123

    Adl123 New Member

    Dear Confetti11,

    I am an 'only child', who is now almost 74. I have had Chronic Fatigue since 1969 and Fibro since 1991. So, I have been going it alone for a long time. I can't afford a senior community, so live alone in the mountains of California.

    I took care of my mom from about 1980 to 1998. Towards the end , when she came to live with me, It was very, very hard. I remember standing in my room, crying, feeling that I couldn't cope. But I did, with the help of paramedics, the people at a wonderful adult daycare, and a great doctor, who insisted, a couple of months before her death, that my mom be placed in a skilled nursing facility. For those last few months of her life, I visited her 3 times a week, and was with her at her death. All this was not easy. I used to worry about what I would do, and yet, when the time came, the doors opened.

    Please don't worry unduly. Prepare for hard times sensibly, then live in the present, and enjoy as much of what you have, as you can.

    You notice I didn't mention family. Our family has spread out through out the US, and those who were close didn't help. There was no conscious negligence on their part. They just didn't think of it, I guess, and I didn't think to ask.

    As for living alone, Most of the time I am glad, because I am free. I have no one telling me when to get up, or to be quiet, or how to do anything. Then there are the times, like last week, when I had injured my knee and my Rheumatoid Arthritis (I also have that) was in a tremendous flare, and I didn't know how I would get out of the chair I sleep in. I couldn't even hold a coffee cup. But, that passed. I find that the hard times, like the good times, pass, and, somehow, I have survived.

    I have made some new friends friends, after having lost almost all of my old ones, and have two old friends, neither of whom can help me, physically. I don't know what tomorrow may bring, but I have today. Oh, yes, I have a strong spiritual life. You might want to investigate that. and get one, if you don't already have one. Believe me, when one realizes that present suffering can actually help others in the world who are suffering, or who have gone before us, it really helps, because then there is purpose to a life where one is frequently homebound and in pain.

    So, I wish you well, I hope something of what I have written helps you. I wish you joy.


    [This Message was Edited on 12/01/2010]
    [This Message was Edited on 12/01/2010]
  16. ilovepink4

    ilovepink4 Member

    I have no idea financially how much it takes to live...or how little ppl are living off of...i have fibro, am in bed most of the time, and thank my lucky stars that my husband has a good job...and he does everything around here now....and i KNOW how lucky I am....

    I also know how temporary this could be....hubby is 55 and life is unpredictable...i am only 43 so I will most likely outlive him..

    I love hubby but I worry that hubby is fed up with doing most of the work and driving the boys to sports and games on his own...

    i know that marriage is one the of the first things to go with these illnesses and i hope that he will stick with me....

    but, we seriously need some housing....there are ppl making money hand over fist opening homes for the homes with four residents....they pool their funding to share on workers and to pay the bills....

    if disabled ppl can get SSI and Medical Assistance....and then they get a waivered service in in Minnesota...the CADI waiver is one of them...our daughter is on all three of these because she has cerebral palsy...and will someday probably have to live in a group home from what i have seen, these are the funding sources that are available to the residents....there are other waivered services that are more appropriate for living out of the family home than CADI...that is just what my daughter gets and she would need to look into getting on another waiver in order to move out....

    BUT the point is, why can't we get funding if we are found to be disabled? to get on disability? then , there should be funding for rent, food, we could clump together in little communities....just like retirement communties.....with businesses nearby...

    one thing to think of is I would not want to live in a cold climate ...someone, i can' trmeember her name, talked of opening a home like this in CANada....someone here will remember her name...was it aussie something? but i would think it would be more successful in a warm climate....

    i think the answers could be found looking at your states dept of human services will show what is available and give you some resources to fund a project like this...i think this could be very lucrative!!! and would catch on because look how many of us are here and this is just a message board! and there are others with other physical ailments that keep them living like us! they could tap into this too....

    i just hope that someone figures out that there is a huge need for this!!!!
  17. deadtired

    deadtired Member

    Confetti, I noticed that you mentioned starting a Not-for-profit and
    asking if anyone was interested in pursuing some housing and support
    services for PWC's. Like I said , I have been nagging my husband for
    years now, why he is out there, setting up wonderful situations for the elderly when there are needy people much younger needing the same help as they are getting in the assisted living centers hes been running!
    As soon as he can get out of the current business , I am pushing for him
    to look at the PWC's particular needs. I have looked at some of those group homes for the physically disabled and some of them do not feel like they would be appropriate for a PWC. Some of them require the residents to get out and work or volunteer, something like that everyday. It is obvious that people with physical disabilities are not all alike! My husband and I have seen an apartment builing in Florida,in Fort Myers, that I think could be an wonderful opportunity. Individual
    apartments, and the town itself would offer lots of diversion. We have
    already discussed that housing would be better in a larger town like this. All I can say for now is, we will look into all of this.. I don't know
    why it couldn't work and there is definitely a need out there...but there is nothing particular to our situations. Even some group homes out there require the person to be in a wheelchair to receive disabled subsidized housing. And we know we are not all in wheelchairs.

    We know what we need, even at the least, like you mentioned.....having an outlet for socialization, possibly a cafeteria, means to get about, transportation to various outings, ec. And the freedom to pick and choose when you would want or need the services as this disease has so many ups and downs.

    My husband and I have been lucky we found each other and have stuck it out. However, I fear alot if I lose him and what would I do. All of
    us have these fears of losing support. My husband and I are in our
    50's , and unfortunately our children have been cursed with the same disease. I know others are have similar situations.

    I will keep in touch and let you know what we find out and if we
    think we can pursue this!
  18. bobbycat

    bobbycat New Member

    I feel for you and I understand as much as I can without being you. On top of all that it adds stress and anxiety to your life which probably creates more health issues. When I get so down in the dumps and I have been that way lately as again I have a whole sleuth of Dr's appoitments comming up I try my darnest to try to think of others and it does me good to get on this board and read stories like this as it makes me realize that although I do not have it easy there are more people out there that have it worse then I do. I don't mean to state I am glad you are this way I just mean it makes me realize that you and others like you make me realize that I am not alone and you are not alone as so many are in your postion. I have read on this board about so many FMS people that recieve little to no support from their families and how they loose their friends, husbands, wife and family members over their refusal to awknowledge or deal with this illness. I just hope that you remember that you do have the people on this board and maybe you can find a group in your area close and maybe one of those people can drive and they can pick you up. I live in a really small town and I could not believe we have a group here. Hang in there and remember we are here for you.
  19. confetti11

    confetti11 Member

    Deadtired-I don’t know what the average CFS patient would need for living expenses. I know if I cut way down, I can get by in the Midwest (housing included) for about $2000/month (absolutely no extras or medical or debt repayment, bare bones...but that's living alone and paying basic living expenses bare bones such as car insurance, etc...not living in poverty conditions) At this point, I don’t know of any governmental programs to help. I’m in search of any at this point though since I have the charity. Want to meet me in chat sometime to discuss more??

    Adl123-thanks for your wise thoughts. Certainly life isn’t turning out typical or as I wanted it for me…but I’m learning to be happy with small things…like just not feeling sick! It really doesn’t take that much for me to be happy after years of suffering…I would just like to have some security because without it, things are very stressful.

    Ilovepink4-thanks for all your input on this idea. Want to meet me & deadtired in chat sometime to discuss more?

    Glenp-I have two dogs and I love their company! Best wishes to you.

    Bobbycat-thanks too for your encouragement! It helps to remember that, ultimately, we’re not alone.

    [This Message was Edited on 12/12/2010]
  20. AuntTammie

    AuntTammie New Member

    here is the reality for me and for many re living expenses.......

    most people who are on disability are not getting anywhere near $2000 a month.....most (myself included) actually have to manage on considerably less than half that

    medicare and medicaid will not cover grp/assisted living types of houses either....and good luck trying to find a Dr that will take them (esp one who actually knows anythign at all about ME/CFS and FMS)

    I am getting food stamps and I think I am at the max amt for a single person (around 170 a month)....not even close to enough unless one lives on garbage that will not help our health at all (& even then I am not sure if it would be enough)...and there are a lot of things that are not covered at the grocery store by food stamps

    I am eligible for assist with my elec bill, but since I would have to go to an apt in the AM to apply and I do not function in the morning at all, that doesn't work

    they are not taking people even on waiting lists here for housing assistance & have not been for at least the last 5 yrs

    I am probably forgetting something at the moment, but those are the things that come to mind off the top of my head as far as the most basic needs and what help is available near Chicago if you are not a senior

    I absolutely agree that some kind of grp living place would be wonderful - we have talked about it on here many times before, but so far it is not looking likely

    oh and that is also forgetting that many of us also have a lot of chemical sensitivities that would need to be addressed

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