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Update On My Mom.

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#1 chuck7297



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Posted 07 December 2006 - 05:16 AM

So I wrote a few weeks back about my mom and how she has had this for the past 16 years. SHe is really getting bad. She had a finger removed right before Thanksgiving. My parents had a cruise book after and they went. She has a scooter but it was a tough trip. She fell out of the scooter twice. When they got back the doctor had told her she could drive again. The first time she tried she ended up on the floor of the garage from a fall. After a series of phone calls someone found her on the floor and finally got into the house after 2 hours of laying there. She was just bruised but her hands have other infections. She is going to the doctor today with my dad and she might have to go into the hospital for IV antibiotics.

She really needs a caregiver. She is only 64 and does not want to live anywhere but home. Are there caregivers that specialize in this disease?

I fear she will fall and break something or lose more of her fingers or hand. Any suggestions or support?

#2 janey


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Posted 07 December 2006 - 05:43 AM

I am so sorry to hear about the problems your mother is continuing to have. I think you need to have a serious talk with her doctor about getting home healthcare. It does sound like she needs constant attention especially due to all the falls. Recently my stepfather has been falling a lot and my mother has had to call the neighbors to help get him up. As a result of that and his other health problems he has qualified for home health care. It's not 24/7, but some shows up everyone and it's been a great help to both him and my mother. So please talk to her doctor about the process.
Thanks for the update. Please keep us informed.
Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 Sweet


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Posted 07 December 2006 - 07:46 AM


Oh I am so sorry your mother and the family are going through this. I know it must be hard for you as her son to watch this.

I’m unsure if there are caregivers that specialize in just scleroderma, but there is no reason why “home health” nurse couldn’t help. You need to go through her doctor to get this ordered. A trained nurse is perfectly capable in assisting your mother. Please call her doctor and see what you can arrange.

Keep talking to us, we’re here for you.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 scampie5


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Posted 25 January 2007 - 10:40 AM

Hi I am a carer from England and there are no carers that specalise in this condition however if I had a client and enough information on this condition carers would be able to look after them I did community care . I work in a residental home and I do have this condition my colleages are well aware of my condtion as when I do Inductions it is the first thing I explain to them so every understands what is wrong with me and have a good insight to my problems I did a induction last week to find that one of the carers had a friend with this so fully understood I try to tell as many people as possible to make them aware of this condition , im sure that if you contacted your local care Agency and talked to them they maybe able to help Lynn