Help For Hospitalized Celiac--urgently Needed

[Tasha2004]

All: My 81 yr old Mom is in the hospital with pancreatitis and other issues. She really has lost weight and they want her to eat a lot of food. Problem is, they keep sending up food with breading and wheat etc.

She cant eat most of what they send up to her room, and is ending up without food.

What can we do?

[Guhlia]

Bring food from home that is gluten free in the meantime. Then speak to the hospital's nutritionist.

[Tasha2004]

That's the problem. The dietician in the hospital has been met with on several occasions. Still no luck.

[Guhlia]

It would probably be in her best interest then if food were brought from home. If you can't make time for that, there are several programs that will deliver pre-made gluten free meals. They're expensive, very expensive, but it may be your mother's best chance. If she's being forced to eat gluten or not eating at all that leaves her body with very little resources for recovery. I wish I knew some of the names of the gluten free meals delivery places.

Your other option is to get a lawyer involved. I'm not usually one for lawsuits and the like, but it sounds like your mom isn't recieving the care that she needs to to get better.

Good luck.

[gfgypsyqueen]

I have never been able to get the gluten-free food to be served correctly when I am at a hospital. Personally, I would freeze portion sized meals for her and DEMAND that the hospital handle it correctly. I would DEMAND a meeting with the head of the hospital and make it clear that a lawyer will be involved if Mom is served anything not provided by you, or if the food is intentionally glutened by staff.

Hope Mom feels better soon.

[Tasha2004]

You oughta hear what happened yesterday to her.

They called me, and discussed with her that she needed to go out of the hosptial to a nursing home for awhile. That was totally inaccurate, as they actually told the wrong family.

We were all upsetover that, and then this happens with the food. Sheesh.

[Guhlia]

If they are truely that negligant, I would be in contact with my lawyer. That's just absurd. I could understand one mistake, but not that one mistake and then the ongoing mistakes with the food. That's just unacceptable. Can you transfer her to another hospital?

[jerseyangel]

Tasha,

I was hospitalized earlier this year--not an emergency, so there was time to prepare. Even so, they agreed it was much safer for me to supply my own food.

The nurses were great about letting my husband use a microwave on my floor to heat things up.

Whatever you end up doing about this, your mom needs gluten-free food right away, so I'd *tell* them that you intend to bring her meals up to her.

Best of luck with this, I'm so sorry they are not being more cooperative.

[Tasha2004]

I was just called to a meeting with the doctor and several administrators plus the lady who called about the nursing home.

Clearly they were trying to cover tracks up.

What they said was it is protoco to assess someone in my Mom's condition and determine if they need skilled nursing when they are released from the facility.

However, I had to sit there and state firmly that no, MOm and I were told she was not being allowed to go home.

Since we had so many important people at this meeting, we also addressed the food issue. We stated that here is a lady who needs to gain weight, and you are not feeding her proper foods. The grievance rep made notes and the doctor and other lady said they will immediately work on things.

I sent my husband to Mom's to get foods from her house, and Mom was blessed that this morning she found an adbocate--the day nurse took it upin herself to start seeing to it that Mom was goin gto have many snacks, and another visit from the kitchen dietician.

[gfgypsyqueen]

Glad to hear things are sounding positive. But seriously, start documenting EVERYTHING. The number of times you speak to people and when and what about etc. Stay in contact with the grievance person etc.

Sorry to hear you are having so many problems. Poor mom. Hopefully she is feeling better.

[Judyin Philly]

Glad to hear things are sounding positive. But seriously, start documenting EVERYTHING. The number of times you speak to people and when and what about etc. Stay in contact with the grievance person etc.

Sorry to hear you are having so many problems. Poor mom. Hopefully she is feeling better.

ditto 10,000 times.

wishing your mom better health and you the strength to be her advocate.

hugs judy

[DingoGirl]

Wow - - so glad she's getting some gluten-free food and the nurse is acting as advocate! This whole thing is absurd and terrible, indeed. It makes me absolutely furious that DIETITIANS don't know about a gluten-free diet.

Please let us know how your mom is doing!

[Tasha2004]

Well, even though she mAy be out tomorrow, Mom isnt doing well.

She had tummy trouble for about two months and lost weight. Now they say she was taking too many supplements and gave herself pancreatitis. They feel that will go away and we threw away the pills.

But she is mentally a bit off because she is afraid of food, loses weight, has trouble finding foods she likes (the pancreas part caused a problem with fats). She also developed this fear of lonliness or being alone. Not easily remedied because she has her house and would have to sell it to move into assisted living. And I think she is better off in her own home with her Celiac proof kitchen.

So we dont know what to do. The whole deal has spun into one huge circle of messes, and we dont know how to fix it.

I did get her gluten free cereal to the nurses station and some rice crackers and other goodies, but if she is sent home I have to figure out what to get her to eat, especially if they still limit her fat intake.

What a mess.

[mommida]

My daughter was in the hospital, as an emergency admit, earlier this year. What a mess trying to get gluten free food! She is 4 so I stayed with her and had to find gluten free food for myself too. The hospital was an hour away from home and on the border of Detroit.

L.