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How Involved Do I Get With My Mother's Care?

missy'smom

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missy'smom Collaborator
missy'smom
Posted

My mom has been under the care of professionals since I was 17. She currently lives in a nursing hope and just in the past year I have found out that she's on a gluten-free diet. I'm sure that she's a Celiac but don't know if she has an official diagnosis. For reasons I won't go into, it's hard to get info. I have some but not everything about her. I've been treated like crap by professionals for not being more involved in her life but shut out when I try to. There's alot of hurt. But I care alot about her and she's suffered alot. She' s written me before saying that she thinks she's not getting gluten-free food sometimes. Today I got a letter saying that for upcoming birthdays and St, Pats Day they are serving beer, chips cake etc. and how it'll be fun. Part of me wants to call the home and ask if there will be gluten-free versions available to her. If not I have the option of ordering from a local health food store some stuff to be delivered. I live out of state.

If I start to take that on where does it end? I sent gluten-free goodies for Xmas but if they give her regular ones too what good is it? It just tears me up though. It hurts me DEEPLY to think of her continued suffering because of gluten that she might still be getting and knowing that she already has permanent damage to her body and mind because it went untreated too long. I'm the care giver in my family and have been taking care of my father in different ways since my mom has been gone and as much as he needs to be responsible for himself he's at a point where he hasn't for so long that he really can't anymore. I feel like I've spent my life taking care of/raising my parents. I have my own needs that are unmet and a child that has special needs. Family is important that's why I've done what I've done but it's hard.

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kbtoyssni Contributor
kbtoyssni
Posted

You could start by trying to get power of attorney for her. That should give you access to medical records and more clout when trying to fight for her.

The next step is to talk to the nursing home, I think. Make sure they have her celiac on file. A doctor's note stating she must be gluten-free is a good idea. I'd also talk to the staff, make sure they understand how important it is to keep her on a gluten-free diet, help them out with food suggestions. I think if they have a doctor's note on file, legally they'd be in trouble if they feed her gluten. You should probably look into your legal rights here just so you know what power you have over the situation. Not that you'd want to take legal action, but if you know what you can do, it might help when talking to the nursing home staff.

missy'smom Collaborator
missy'smom
Posted
  • Author

Thank you for your response. I was mulling this over. I called her and asked some questions of her and the staff and got some unexpected answers. She's non-compliant with the diet and they can't prevent her from eating bread, etc. if she chooses to. They've tried to give her gluten-free bread etc. but she doesn't like it. She gave away all the stuff I sent at Xmas and gives away other non-food items too. She's got mental health issues. I really don't expect at this late in the game for her to understand or be able to be compliant with the diet. It's sad but now I don't feel the burden of trying to help her. I'll just mention it now and then and give her snippets of info. to educate her a little but with no expectations. That's all I can do I think.

Nancym Enthusiast
Nancym
Posted

My parents were quite eager to have us kids make decisions for them and take over their finances and talk to doctors, etc. I pretty much got that chore. Talk to your Mom about it, if she's competent and willing it is easy. If she isn't willing... well then that's another story.

If her doctor has dictated a gluten free diet for her, the NH needs to comply. If they're not complying then I'd get in touch with the doctor. Lots of time people in NH's are not fully competent so they shouldn't be relying on the patient (necessarily) to be able to make decisions about what to eat.

Good luck! My own mother is in a nursing home and it can be VERY confusing sometimes as to what they are or are not doing.

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      Should I get a second opinion?

      By trents · Posted

      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
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