how do you do it?

[michelle9343]

I was wondering if anyone out there dealing with a special needs child does when they are sick themself? My DD is 9 and has a rare genetic disorder . She requires constant care. I was disgnosed with Lupus and feel thankful that I finally know why I suffers so much everyday. My family thinks Lupus is NBD and I should live my life like I always have. They can not understand how hard it has been for me and I always kept pushing myself because everyone thaought I was in pain from having to lift my 80lb DD and I was tired from all the stresses of her medical care. Now that I know why I feel sick I know I need to slow down but can not figure how.I have no support system other then DH (we dont live by any family) And I can not afford to pay for a sitter. I feel like there is no solution. I am hopping my Dis freinds can help.

 

[KPeveler]

check out butyoudontlooksick.com. If find that site is great, especially when dealing with invisible issues...

 

[Earstou]

I have Chiari, a brain malformation, and my son is asd and adhd. I have near constant dizziness, constant headaches, chronic fatigue and weakness. Also I've been losing my hearing, so that's a new disability area I'm having to acquaint myself with now. My son's early years were extremely hard on me, as we were both undiagnosed, and he was a very "wild" child! Chasing a hyper three year old when all you want to do is puke from dizziness is very hard! We both would end up laying on the ground as I made a last ditch effort to grab him as I fell.
We also don't live near family, and I wish I had more advice I could pass on to you, because I know how difficult it is!! Educating family members is the only way they will realize the impact the illness has on you. I know some of my family truly understands, while others probably don't even remember what is wrong with me. I have an internet support group I use, as there are few groups for my illness anywhere. They recommend sending a video or dvd (if available) to loved ones explaining the illness.
Are there any agencies or support groups nearby that can help or tell you of other resources?

 

[SandrainNC]

Are there any medical type places that can come to your house and help that insurance would cover? I hear advertisements on the radio all of the time for this type of thing. Or a respite type of agency?

Sandra

 

[Piper]

Go to thts website: http://www.lupus.org/newsite/index.html

Print out information for your family to read. Take your husband to the doctor with you and have the doctor speak frankly with him about your condition and what to expect.

I can relate to what you are going through. Even after many trips to the hospital, and 40 years of living with lupus, my family still doesn't quite "get it."

 

[MarieS]

You might want to check into what types of respite or nursing care programs are offered in your state that your DD might be eligible for. In Indiana there are medicaid waivers that you can apply for ( some have very long waiting lists though). It waives the parental income and provides services like respite or nursing to help parents care for their kids at home. We also have other programs such as the caregivers support program which gives a certain amount of respite hours per month. Try calling the Bureau of Developmental Disabilities or Family and Social Services Admin in your county and see what is available. Or if you know of a nursing or respite agency in your area, call and see what programs they have.
Thinking of you!

 

[HopperFan]

Medicaid waivers here for this as well. I believe they are called natural support waivers. A good case worker can really help you through. Yes, you may be on a waiting list for awhile, but each day is a day closer to help. You can use the funding to get someone to come in and do respite, give her baths so you don't have to do the heavy physical work, and other things. The funds can even pay for diapers and other items needed beyond the normal time frame. Ask your doctors or find someone in your county that can direct you to the proper sources to apply for this. Ours is via a State Dept, but a Support Coordinator with a private firm contracted by the state was our connection (we have a different kind of waiver for different needs). I know a few families who just got approved and some who are still waiting.

Actually it was our school who put us in touch with the right people, helped us with the initial forms and made sure we got started with the right group. So I would:

1) Ask at your school
2) Google like crazy (I put some links below)
3) Check with your most local community health agency for direction
4) Check with your pediatrician
5) Know that it is overwhelming and asking for help is completely understandable. Help is there all during the process.

http://ahca.myflorida.com/Medicaid/hcbs_waivers/index.shtml
http://apd.myflorida.com/about/medicaid-waiver.htm

 

[michelle9343]

Thanks you all so much. My DD is on the medwaiver late list and has been for over 3 years Her pediatrcian is no help at all... I will keep on searching for help.
Yesterday I spent 2 hrs on the phone with DD insurance co trying to get her an eye dr appt... Talk about stressfull
Piper I have been on the Lupus.org website and it is so helpful!
Again thanks to all of you!!!

 

[dclfun]

Just sending some pixie dust and support. I am a widow who was diagnosed with ALS right about the time my husband was dying. It was incredibly difficult to find myself losing my abilities while still needing to financially, physically, and emotionally support my children. We lost our home when we lost my husband's income and are still struggling 6 years later but at least making ends meet. One day I will no longer be able to work but I'm striving to last as long as I can just so my children can get older and more indpendent while still having the love and care of their mother. I think the biggest problem is there's no help for disabled adults (who are not developmentally disabled) and we are so tired from getting through each day that there's no time to even research a way to get needed help. I have known several women with lupus in varying stages and it would be hard enough to deal with that disability without also worrying about a disabled child. Hang tough...and hopefully one day our legislature will "get it right" and realize we are trying and just need some help. ---Kathy

 

[shovan]

I'm sorry I don't have any solutions for you, except to let you know you are not alone in your struggles.

My DH has muscular dystrophy and I have degenerative disc disease, fibromyalgia, IBS & asthma. The back problems are making it very difficult for me to take care of my DH. We've had to shell out a lot money for lift, bathroom equipment, etc. that was not covered by our private insurance. My DH is still able to work, but that doesn't help when it comes to getting assistance. We have been trying to find something, so we can get me some help with bathing him, etc. NOTHING! They actually told him if I left him, they could provide some help but as it stands there is nothing available. There is no way to afford the help on our own.

Look into getting some type of patient lift, none of them are great, but I don't know how I managed before without it. (My DH weighs about 160 & I'm about 120.)

I have a good friend who has lupus & has had some serious medical issues due to the lupus. Find out everything you can about your illness, so you can take the best possible care of yourself!!

 

[dclfun]

Shovan...part of the problem is that you live in Lousiana and I live in Florida- two of the WORST states for getting assistance for adults. Things are turning around...talk to your local CIL ( Center for Independent Living). Florida just started a program where you CAN get a PCA for someone who is working and it's paid for by the state. A friend of mine at work told me she was on a pilot program for this as she was shelling out $300 a week OOP for her PCA and unable to live independently without her parents paying her rent. These programs are offered on a state level but you are right- the Federal government in their short-sided view of things, would rather we adults lived in a nursing home and have the state pay 100K per year for care vs. giving us a much smaller amount to enable us to remain taxpayers. I think we all have the right to live and work in our own community and to be with our families For the OP, I'd also call CIL and see if they have a respite program or funds. I'd remind your congressmen about your situation via emails and letters. Let them know that unless you receive some assistance there is danger of your child having to live in a facility if you are unable to care for her. The more of us who voice a need, hopefully those needs will be funded and met. ---Kathy

 

[shovan]

Shovan...part of the problem is that you live in Lousiana and I live in Florida- two of the WORST states for getting assistance for adults. Things are turning around...talk to your local CIL ( Center for Independent Living). Florida just started a program where you CAN get a PCA for someone who is working and it's paid for by the state. A friend of mine at work told me she was on a pilot program for this as she was shelling out $300 a week OOP for her PCA and unable to live independently without her parents paying her rent. These programs are offered on a state level but you are right- the Federal government in their short-sided view of things, would rather we adults lived in a nursing home and have the state pay 100K per year for care vs. giving us a much smaller amount to enable us to remain taxpayers. I think we all have the right to live and work in our own community and to be with our families For the OP, I'd also call CIL and see if they have a respite program or funds. I'd remind your congressmen about your situation via emails and letters. Let them know that unless you receive some assistance there is danger of your child having to live in a facility if you are unable to care for her. The more of us who voice a need, hopefully those needs will be funded and met. ---Kathy

Kathy, Louisiana is horrible on this, I think we have the most people & the largest funding for nursing homes in the country. That was their other suggestion for us, when DH asked if I ended on disability would we then qualify for home care assistance, they said No as long as he was working we could not. And when he does stop working then we could both go into a nursing home!!! Like that was a solution?! I don't know what dept. DH eventually spoke to, he was sent on a wild goose chase just trying to get any info on it. I will find out if we have a CIL & if he has spoken to them yet. Thanks!