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Thread: New Caregiver to Adult semi disabled brother

  1. #1
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    Default New Caregiver to Adult semi disabled brother

    If this gets long im very sorry,
    My brother who is 38 just recently moved in with me,my husband and our 3 children, My brother has lived with my dad almost all his life with the exception of when he was younger, ages 5 to 11 when he lived with our mother. My parents divorced when we were very small. My father has just recently passed away and my mom passed away 12 years ago, there is no one to care for my brother except me, I have a younger sister who is a complete mess, My brother stayed with her for 3 months and she terrorized him and treated him horribly and eventually kicked him out,
    Anyway,,,,i dont know whats wrong with my brother, He has never been tested, or diagnosed with anything, My father was very old school military and felt that anything like ADD, depression etc did not exist it was merely being lazy and could be beat out of anyone, ,,,,I know when my brother was 8 years old he developed pneumonia,,,,now the things i am about to say are not to elicit pity over my crappy childhood, these are things that happened that i believed contributed to my brothers issues,,,,,when he was 8 he got sick and was denied going to the hospital, My mom lived with someone who wasn't very good to us and he said that my brother will get better we just have to "starve" his cold, I was about 10 at the time and i remember slipping out and calling the police because my brother was shaking and throwing up so badly, and when we finally got him to the hospital he had a very dangerously high temp and i remember he didn't come home until after school started again,,,,he was admitted on his birthday which was june 1st and in NY we started school in sept, I was young so i dont remember everything and some of this has been filled in by a family member,
    So lets FF 30 years,,,,my brother was in all special ed classes and has never held down a job, you cant have a conversation with him unless its about star wars, star trek or a movie coming out, he knows almost every little fact about everything but he has this energy about him where you just know something is wrong,,,,,the only way i can explain it is if youve ever seen the movies rain man and sling blade,,,,,he is an exact cross between the 2 actors.
    So recently he has had to come move in with us and share a room with my 14 yr old son, I have to remind my brother to shower, to brush his teeth, to wipe the toilet down after he uses it, i have to remind him several times a day that his dirty clothes have to go in the laundry basket and that he needs to change his clothes every day , . he will get up at 7 am and head to the computer int he living room and sit there all day long on facebook and play every single game there is to play,,,,once i went on and looked at his game requests and he plays over 100 games,,,,,,he has hundreds and hundreds of movies which he has alphabetized and can look at the stacks and know if one is missing, he has got thousands of star wars and star trek items all over the place, boxes and boxes of stuff stacked in closets and hes getting very nervous that his stuff has to stay packed up and he cant have it all out,,,,,theres not much i can do, its hard enough hes sharing a room with someone else, If i try and talk to him he will blank out on me, and just do this grunting thing and completely ignore me, I would like for him to work but i just dont think he can, the only jobs he has ever had he has been fired from within weeks, His longest job was mowing the lawn of his church but that ended when my dad passed away,
    i dont know what to do, i dont mind the little things i gave up, my quiet sunday mornings when im up before everyone else, fridays when i have a day off and can do what i want all day, romantic evenings of privacy with my husband,,,,i knew what i was getting into when i offered to bring my brother here, so these things i dont mind, but we are barely scraping by and he cant sleep in my 14 yr old sons room forever, I feel selfish when i start to get stressed out over taking care of him,,,,please dont get me wrong he is not an inconvenience at all and he has no where else to go and the one place he went treated him so badly, I cant find any resources in my area, we are in florida, and with him being an adult i cant get medicaid unless he has a disgnosis and i cant get him diagnosed without insurance, I did manage to talk him into giving me power of attorney/guardianship so i can at least try and get some form of help but i dont know whats out there, If he were a child it would be a lot easier and theres a lot more resources,,,,im not worried about my marriage,,,we have been through rougher stuff, the only thing im worried about is getting stressed out and my 14 yr old getting stressed out and moving in with his dad, my son gets along very well with my brother and righ now there is no basis for this fear but i still have a bad case of the what ifs right now,,,...thank you for letting me vent :)

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Adaly07))))))

    Welcome to Braintalk!

    I'm glad that you found us and have told us your story. Bless your heart for taking on the responsibility of your brother's care.

    Florida is a difficult state, with regard to services for persons with disabilities. But there are resources to assist you in caring for your brother, according to the Google search I just did. Here are some places to start:

    http://apd.myflorida.com/

    http://www.disabilityresources.org/FLORIDA.html

    http://www.abletrust.org/links/agenc...ings_map.shtml

    Your brother should be considered indigent, which should qualify him to receive Medicaid. I know that Florida tends to "skirt the Federal laws," which is saying it quite politely. But this is a generally accepted criteria for Medicaid throughout the U.S., and your brother should qualify.

    If you can find an advocacy group for persons with developmental disabilities, which is the generic term, which I believe would apply to your brother, based on your description of him, then you won't have to battle alone. You may have to do a bit of research and make a lot of phone calls, but if you persevere, you may find the help you need.

    Please feel free to join us on the Child Neurology forum. A few of us have adult children with developmental disabilities (including me), and all of us understand what you're going through, regardless of our children's ages.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    @ Earth Mother
    Ty TY Ty ,,,,i cant thank you enough for your reply, I will get on this first thing in the morning :)
    Brightest Blessings to you

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    ((((((Adaly07))))))

    Please call me Rose.

    You are so very welcome, my dear, and I hope that you will find something, anything, among those links to help you care for your brother. If you don't ask, you'll never know. And if you don't ask, they will not be coming to your doorstep to offer help.

    An adult day program would be beneficial for your brother, allowing him to socialize, to be out and about, perhaps take field trips, and have an experience in the real world, rather than parked in front of a computer all day. Perhaps that hasn't been an option to him previously under your father's care, but he might now discover an entirely new world outside.

    I really want you to find an advocacy group to help you through the bureaucracy and red tape. An advocacy group, who really cares about persons with disabilities and wants to help you and your brother. Experts, who can lead you in the right direction, or find someone to help you care for your brother at home, or give you respite, so you can continue to have your life and your moments, without denying your brother his freedom.

    You also need someone trustworthy to lead you through legal guardianship, because there are many scam artists out there, and you don't want to be led down the wrong path. Do some research on Google about legal guardianship in Florida, so that you are armed with all of the information you need to protect you and your brother.

    Part of your job/role as your brother's careprovider is advocating for his rights. And he does have civil rights, under the Americans with Disabilities Act (ADA) and the Olmstead Act, which promotes independence and community living for persons with disabilities in lieu of institutionalization. He is entitled to SSI benefits. He is entitled to Medicaid. Since his parents are no longer living, he might also be entitled to Medicare. If he isn't receiving those benefits now, then you will need to apply for them on his behalf.

    Social Security on line for Florida:

    http://www.ssa.gov/atlanta/southeast/fl/florida.htm

    Medicaid in Florida:

    http://www.myflfamilies.com/service-...-cash/medicaid

    Medicare and Medicaid in Florida:

    http://www.stateofflorida.com/Portal...aspx?tabid=117

    I know that it is overwhelming. It is. Oh man, how well I know! But, these are the resources, which will support your brother, so the worst part is getting it all in motion. Once things are established, things are a bit less complicated. But I make no promises, because we are dealing with government agencies.

    Persevere. If someone says, "no," then ask them to refer you to someone, who can help you. Before you call, make a list of questions, and take notes as they are answered. It helps to have a reference to sort it all out.

    Keep us posted on how things are going. And if you encounter problems, post and let us know, as some of us have been through the system and may be able to give you some pointers.

    Brightest Blessings to you too!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Welcome to our forums. Rose has already given you a lot of excellent and very practical advice. I suggest that you also look at websites that provide support for caregivers such as The Caregivers' Survival Network, LIFT Caregiving and Caregiver Connexion. They are all great sources of information and support. If you have the funds, I would also suggest that you try The Care Company - the founder, Cindy Laverty, is a caregiving coach and she is excellent. I interviewed her recently for my blog and we had a long chat - I was highly impressed with her authenticity, empathy and skill set. Whatever resources feel right and feel helpful, I wish you all the luck in the world. With warmest wishes, Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Thank you for all the information, I keep hitting dead ends, every call I make sends me to another place which sends me to another place and so on and so forth, I think im going to start with my husband and I filling for guardianship/power of attorney for him, Theres a pace where i live that will file all the paperwork and notarize it for a small fee, When thats done I can get him on my health insurance and then start with a DR. appointment and get refferals that way, Im looking for some kind of support groups in my area because i just feel so overwhelmed and my husband is getting that vacant look in his eyes wen i start to talk about this, lol but i also want help for my brother because i cant even begin to imagine how hard this is for him, I feel like im nagging him all the time but sady he has some behaviors i just cant have here int he house with small children, most revolve around bad habits and horrible hygiene, but we are working on it 1 step at a time,

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    ((((((Adaly07))))))

    I'm so sorry to hear that you are running into bureaucratic roadblocks. The System is gnarly and unforgiving often. And, as I said, Florida is a difficult state in a lot of ways, obtaining services is likely among them.

    You might be able to apply on line for Social Security for your brother. Does he have a Soc. Sec. number? If not, then you have to start at square one. If you call the Social Security department (mid month and mid week are best times to call, and mid day), they will make an appointment for your brother and you to go to your local Soc. Sec. office, where you can have a face to face meeting with a Soc. Sec. case manager. You might even be able to set up the appt. on line at the Social Security website.

    This might get the ball rolling for your brother, by putting him in the System, and the Soc. Sec. case manager might direct you to other programs, which will help him and you.

    Guardianship and power of attorney is a good idea. That gives you authority to represent your brother.

    You shouldn't have to put your brother on your health insurance, because he should qualify for Medicaid. There is absolutely no reason why he would not qualify. He is indigent and poor, which are the basic qualifications for Medicaid. He's also disabled. But, you're probably correct that a doctor needs to sign a form to state that he is disabled to obtain assistance.

    Your brother needs structure and routine to help him with daily activities and hygiene. If you can set up a schedule for him, and write it on a big board, that might help him to remember. Perhaps he could use a peg, magnet, or even a check mark to indicate he's done each task/activity on the board. Once he gets into a routine, he might not need the board reminders. And your reminders can be, "Hey, it's 9:00. Time for your shower!" or "It's 9:00. Are you getting ready to take your shower now?"

    And incentives are always helpful, such as his own special toiletries (soaps, shampoos, etc.), a towel with his initial on it or a character he likes in movies or video games.

    Perhaps you can interest him in helping you make meals. Snapping green beans, stirring a sauce. Make him your sous chef! And assign him chores/tasks around the home, like taking out the trash to the bins, or watering the plants in the yard, so that he feels useful and part of the family unit.

    Nagging is part of caregiving. Don't feel badly about it. He needs to be nagged. He needs the assistance of being nagged. Let's drop "nagging" and replace it with "guiding" and "teaching."

    Oh, and that glazed over look in your husband's eyes? That's a common condition found in most husbands.

    Remember that you are welcome to join us on the Child Neurology forum any time.

    Saying a prayer that you get the help he and you need. Please keep us updated.

    Bless You and your brother, husband, and children!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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