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Home health care

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6 replies to this topic

#1 albino joe

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Posted 23 July 2008 - 06:23 PM

My wife is 36 years old and has had Scleroderma for four years and about 14 months ago she became bedridden. She had to move in with her mother because she needs 24 hr care. Her mother said she can no longer live there so we need someone to help her while I am at work. Any ideas? We have spent a lot of money out of pocket going to UCLA because the West L.A. Kaiser has no clue how to help her. She has been denied Medical & Social Security. If anyone knows of any companies that provide home health care would be great.

Albino Joe

#2 Sheryl


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Posted 23 July 2008 - 06:32 PM

Albino Joe, sorry to hear that your wife is having such difficulties. Others on this board have had difficulties of being in bed many months as a time and finally have pulled through and are once again up and about and doing better. In this day and age it is hard to believe that a person could be denied medical or social security if they were in great need. Maybe one of our staff or other members have informtion that will lead you in the right direction for proper care of your wife. Let us know how she is doing.
Strength and Warmth,

Sheryl Doom
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International Scleroderma Network (ISN)

#3 truman


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Posted 24 July 2008 - 12:36 AM


You don't say where you are located. The States? Try surfing the net for Governmental services for your state. Keep us posted.

It is what it is...........

#4 razz


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Posted 24 July 2008 - 02:13 AM

Albino Jo,

Depending where you live and your income level, there are government agencies that can help you.

When I became bedridden my mom helped me for a while. After a month or two I was able to get around a little and did some calling around. At the local level, (in my case, that's Chicago) the city had a program where a personal care assistant would come to my home and help me for 3-4 hours with personal care, cooking, and some cleaning, depending on the individual's needs. First, someone would come out to your house and make an assessment. In my case, I was charged a very small fee. (It was something like five dollars a week for the service.)

Call your government agencies (at every level) and I hope you find something available for your wife!

Live well, Laugh often, Love much

#5 MicheleM


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Posted 24 July 2008 - 02:30 AM

Albino -Sorry for the added stress in your life with your current situation. When my dad was deteriorating physically along with dimensia and my family couldn't handle the 24 hour care, we called in a nursing service. He was in assisted living and they referred us to several different services. The one we used was marvelous and gave the family a break - for us it was one day a week - but depending on what you can afford they can come in every morning, every pm, what ever your needs are they can compliment. We were self pay and it was about $50 for 3 hours in New Jersey. I am in Georgia and that was how I was able to help from a distance. He passed last May at 90 years old and we were happy he had such good care & good life! I hope this suggestion helps, if only to know there are solutions out there, but sometimes you have to get creative to work them out!
Soft hugs your way,


#6 Peggy


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Posted 24 July 2008 - 05:17 AM

I'm so sorry for what you are going through. First of all, I can't believe that she doesn't qualify for disability. When wa the last time you tried? They have a whole new look and classification for autoimmune diseases, especially Sclero in that it is usually automatically approved.

Around here, which is Minnesota, we have an agency where they have like a "grandparent" type program. What this is is people who donate their time to go into people's homes to help. This is a free service. Contact your county social services or health department and see what they have. There are usually a number of groups or entities that have services that are free or based on what you are able to pay.

I wish you all the best and I hope your wife gets better. Please keep us posted on how its going.

Warm hugs,


#7 Sweet


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Posted 24 July 2008 - 09:13 AM

Hi and welcome to the Sclero Forums,

I'm certainly sorry to hear about your wife. Please contact your local DSHS office or Medicaid office. They should be able to help you. You could also call the local Home Health Care office and they can help get the ball rolling for support.

I do wish you the best.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)