NO HELP

STILL WAITING FOR HELP. FINALLY APPROVED FOR MEDICADE LONG TERM CARE FLORIDA. THE INS. PROVIDER CONTRACTED WITH LTC CAME OUT AND DID THEIR "OWN" ASSESSMENT OF MY NEEDS. THEY DETERMINED I ONLY NEEDED 45HOURS A WEEK OF HOMECARE ASSISTANCE. MY DOCTORS ORDERED 24HOURS A DAY CARE. I HAD TO SEEK OUT AN ATTORNEY, DISABILITY RIGHTS FLORIDA TOOK THE CASE BUT NO RESOLUTION IN SITE. IT HAS NOW BEEN 3 MONTHS. IN THE MEANTIME I HAVE BEGGED, BORROWED, BEEN VERBALLY ABUSED BY FAMILY MEMBERS WHO REFUSE TO BELIEVE THIS IS HAPPENING. I WILL SOON LOOSE MY HOUSE AS A RESULT. I HAVE CONTACTED ALL THE MS ORGANIZATIONS FOR HELP. I RECVD SMALL 1X GRANTS OF $500.00 TO TRY AND MAINTAIN HOMECARE. I AM COMPLETLY EXHAUSTED FINANCIALLY AND EMOTIONALLY, THOUSANDS OF DOLLARS OWED AND SPENT ON TRYING TO REMAIN IN MY HOME. THEY ARE TRYING TO FORCE ME INTO A NURSING HOME. I ABSOLUTLY REFUSE THAT AS AN OPTION. I AM NO LONGER DEEMED WORTHY OF HELP. I HAVE BEEN ABANDONED BY FAMILY, GOVERNMENT AND ORGANIZATIONS SET UP TO ASSIT US. I HAVE HAD MS FOR 27 YEARS. I HAVE LIVED AND MANAGED MY LIFE ALONE. I NEED HELP NOW. AND CANNOT GET IT. THE MS IS NOT GOING TO KILL ME. MY BATTLE TO INSURE MY NEEDS ARE MET WILL. I AM SICK FROM THE CONSTANT DAILY BATTLE WITH INSURANCE, HOME HEALTH AGENCIES, AIDS, PRESCRIPTION DRUG COVERAGE AND THE DAILY PHYSICAL CHALLENGES. I AM NO LONGER WORTHY TO BE HELPED. I NEED ASSISTANCE TO TOILET, TRANSFER, BATHE, DRESS, MEAL PREPERATION, HOUSECLEANING. MY MIND IS 100 % IN TACK. YET AT AGE 62 I AM BEING THROWN ASIDE. NO ONE CARES.I CANNOT CONTINUE THIS WAY. I HAVE TRIED TO MAINTAIN SOME PLEASURE BUT IT IS BEING STOMPED OUT WITH CONSTANT DAILY ISSUES AND NO ASSISTANCE. SORRY TO TELL YOU ALL BUT THIS IS OUR FUTURE. IF IT CAN HAPPEN TO ME, WHO HAS BEEN INDEPENDANT FOR 30 YEARS IT CAN HAPPEN TO ALL .

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I’m praying for you 🙏🏽🙏🏽🙏🏽🙏🏽

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traveljaff i certainly don't know what the world is coming too. I am sorry that you have to suffer how you do to maintain your independence. Maybe a nursing home is the answer, at least you should get 24 hour care, and you will be able to mix with other people and not feel so alone. I know 62 is no age to be thinking of such things, I am 61, but I know one day it will come when my husband cannot cope with me. Ms has a lot to answer for, please keep us informed as to how you are doing, blessings Jimeka 🦋 🌈 👋 🙏

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thank you. NO A NURSING HOME IS NOT THE ANSWER. IT IS LEGALIZED NEGLECT . I AM IN FLORIDA, 7 PEOPLE DIED RECENTLY WHILE STAFF LOOKED AWAY. RIGHT ACROSS THE STREET FROM A MAJIOR HOSPITAL. I SEE CLEARLY THAT WE ARE DISPOSABLE. NO ONE CARES IN SPITE OF ALL THE NON PROFITS, GOVERNMENT PROGRAMS WE ARE BEING FLEECED AND NO ONE CARES. REALITY, YES, NEW ? NOT SURE. ME I WILL DIE ON MY TERMS NOT FROM NEGLECT.I HOPE YOU FIND YOUR OWN TERMS SHOULD THE NEED ARISE.

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traveljaff & jimeka here in Boston we have a nursing home, The Boston Home, thebostonhome.org/ , that is mainly for people who have MS. Residents tend to be younger and more mentally alert than traditional nursing homes. Might there be something similar in your area? I'm so sorry for what you are going thru.

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THANK YOU. NO. FLORIDA HAS NOTHING. I WAITED OVER 1 YEAR ON A WAIT LIST FOR THIS MEDICADE LONG TERM CARE. AND AFTER ALL THAT THEY OFFER 45HOURS A WEEK! IT IS OUTRAGEOUS, BUT THE ANSWER I GET IS. OH YES, FLORIDAIS THE WORST FOR HELP. NO WE DO NOT HAVE ANY SPECIFED MS HOUSING. I LIVED IN NJ BEFORE MOVING HERE 17 YEARS AGO NOW. NJ HAS SOME HOUSING DEDICATED TO DISABLED WITH LONG WAIT LISTS UPWARDS OF 5 YRS. NO ONE CARES. THERE SIMPLY IS NOTHING OUT HERE FOR ME.I WORKED SAVED AND MANAGED TOLIVE IN MY OWN HOME IN A MODEST LIFESTYLE MY ENTIRE LIFE. I AM LOOSING EVERYTHING NOW. AND NO ONE CAN HELP.

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traveljaff you tried MSAA, along with nationalmssociety.org and msfocus.org ? Those are the 3 I know of. I wish I could do more for you.

Jes 🌠

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Hi, is possible you be a roommate in a place that someone could take care of you being a MS patient friend, together with the 45 hours included in the Medicare for yourself? I guess it will make your life easier if you find a couple or small family who could take care of you in their house. I know a friend who find this way at the last minute, and this one only use a scooter,not be able to live alone anymore.

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I contacted local colleges that have programs for medical personal care home health aides. I registered my job in exchange for free room & board. not any response yet. also contacted colleges for displaced students/victims of Puerto Rico hurricane that need housing. nothing yet. thank you

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Great, follow this patch you will get good results! Keep doing and reply to all frequently.

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traveljaff try contacting the hospitals themselves also. Miriade had a great idea. I wish you luck!

J 🌠

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Sorry 😐 to hear your situation. I know it doesn’t seem right to work your whole life to support yourself and at 62 have nothing left. Our medical system s—k’s and I’m afraid 😱 it’s not going to get better. We pay into all of the governments policies and received nothing when needed. I truly feel for you as I see my future coming also. Not sure what to do, but 🙏 and hope. I have seen a couple assistance living places that are quite nice. My mom was in one for seven years in Idaho on Medicaid and was nice. My prayers are with you 🙏🙏🙏🙏

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i so agree with you!

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I will not submit myself into those places. it is all about money, no additional patient care, you still have to pay out of pocket for 24 hour care. does not make financial or emotional sense for me. I cannot afford to move into assisted living. and I cannot live with neglect. thank you.

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How about a reverse mortgage on your 🏡? Might give you some income for lights, heat, ac, food, etc. They don’t take it till you pass away. If family wrote you off, don’t save it for them. 🙏 sorry to rattle but this really hits home 🤷🏼‍♂️

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I looked into it. I still have a mortgage balance on my property. and I am 62. so the actual cash I could obtain would not be enough to make a difference. my only way is to sell the property altogether.

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Traveljaff, I have a friend who is 52 and going into a carecenter in Chicago.She knows she needs 24 hr assistance and we have cried buckets over this issue.Yes we go on our own terms.Im sorry for the abuse i do hear.Family, caregivers government and it all feels like life has given up on us but....i know there is life.I use to be a nurses aid at a care center in the 70s.It was ran by a man who wanted people treated as if they were his mom.I loved those patients.I was trained on the skilled unit.So no, they all aren't places to go die.Now in this day and age also a lot of help is there.I know if you can use the computer you are very capable of doing many things.Yes, your mind is clear but MS isn't nice sometimes.Im sorry you hurt so bad, we all wish we could take that pain away but cant.We all wish we had the answers.My friend is giving up her place to go to a Catholic home, i don't know how that works.Boston is beautiful and i believe what Mr Bigcat has stated.Do you have a caseworker?If so they need to at least give you a list and priority line.Kenu is also right about that morgate on the house.food and shelter should be a right in countries but many are homeless and with kids etc.It really rattles me also.We are all a paycheck away.We sold one house to get one of lesser value and in the process got rid of bills. but for now.We are all a paycheck away they say and when both me and spouse are ill it sure isn't good.Many prayers and thoughts from this group.plse hang on.YOU ARE WORTH IT. When one of us fights for something we all win.jj

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