Battle Fatigue

Hello, I am new to this site. I have MS 29 yrs. I am 61. I am exhausted now. The last 3 yrs have been constant struggle to get my needs met. I feel like I have to constantly justify my needs. I need home help now. Getting assistance is been a constant battle. I alone and cant fight anymore for services I need to maintain living in my own home. Anyone else struggling to get the home services needed to remain safe and independent in their home.

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11 Replies

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  • Have you ever served in the Military? There are untapped resources there for home health care and also the MS Foundation does offer limited help as well. Most insurances will not cover home care unless there is an acute situation where a recovery is anticipated.

  • NO, Not military, just thought the phrase suited me well these days. No, I need continuous help. Small grants of a few hundred dollars go in a week. I need ongoing in home help. It is a nightmare worse than the disease progression. Truth is, no one really cares when you get to this stage. Simply no resources for anyone fighting this alone. The government will not assist until you have exhausted every penny on your care. It is a horrible position anyone who is challenged with illness or injury and requires home assistance faces. Thank you for your reply. Be Well

    Felicia

  • Felicia,

    From your response, I assume you live alone. Is there any time of day you do not need someone there? Do you need help bathing, dressing, transferring? Do you have a spare room? Do you live near a College with a nursing school? I ask because a nursing student might do personal care and meal prep in exchange for room and board.

  • @traveljaff, there are 3 MS organizations that I know of, and each one varies considerably in the kind of help that is offered but there is often help available. Have you asked the National MS Society (your local chapter of it), the MS Association of America, and the MS Foundation? Sometimes there are cash grants, sometimes home helpers--or advice on how to find them, sometimes durable medical equipment (sometimes on loan).

    I don't know if you're in the US or what state you're in, but states differ in their Medicaid coverage. If you're on Medicaid, your state might offer home health aides at a nominal fee or even with the costs covered by the state. I had a home helper for many years in WA state, and the system worked fairly well.

  • Thank you, I am not eligible yet for Medicade. My state Fl. has a program called COMMUNITY CARE, I have a small copay which is ok.But the fight to get more help (only14hr wk, and no driving) which is not enough to manage alone. I no longer drive and cannot travel alone for long durations. So our free bus for disabled I cannot use. It all is a big problem.

    The system here is bad, and no one wants to fix it.

    Thanks again, be well

    Felicia

  • As an RN, my work was Home Health... With that said, there IS help for you. Whenever I had patients with MS, I'd usually order a social worker (msw). Please, find hope and cling to it. You are not alone, and I'm glad that you are on this forum reaching. Personal care aide can easily be ordered for you if your on any 'caid plan...I.e Medicaid. As long as you have a need, you can always be helped by the medical community. Keep fighting... Blessings

  • Thank you, be well

  • Hi, traveljeff. I assume that you are on SSD and therefore on Medicare or Medicaid. Some States have assistance programs for individuals in your position. Do some checking to see if yours does (I assume you are in the US, which may not be correct). You might also contact the MSAA to find out about service dogs. I know this may sound funny, but these dogs can do amazing things. I have a friend who suffers from sarcoidosis and her dog dials the telephone, turns the lights on and off, and does the laundry, just to name a few things. They can also help you keep your balance if you are capable of walking,; thus they can help you transfer from room to room and be there to help you into and out of the shower or tub. Obviously there's a lot that they can't do, but there is a lot that they can. And most of them are provided free of charge! Good luck.

  • thank YOU. I HAVE FOUGHT FOR MINIMAL HELP IN MY STATE, Florida, 2 YR BATTLE, AND I AM EXHAUSTED. I WOULD LOVE A DOG, BUT sadly I NEED CARE MYSELF, I CANNOT TAKE CARE OF a dog. .THANKS FOr THE INFO,

  • I lived in South Florida until last October when we moved to Arizona. Are you on SSI, which is supplemental income? You generally need to apply for this before you apply for SSD. I would contact my state rep and state senator to see if they can help. You might try contacting an atty in Miami, Lyle Lieberman---he got my husband SSD after he had a stroke and they kept turning him down. I got SSD on my first try. It really depends on whose desk it lands on. Even if you already have SSD and/or SSI, Lyle might be able to do something to get you financial help, or at least put you in the right direction. Good luck!

  • Felicia, I live in South Florida. Where in Florida are you located?

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