<<Disclaimer: Verify this information before applying it to your situation.>>

My question was: Has anyone experienced putting a loved one with celiac into a skilled nursing facility, and can you offer tips, suggestions?

My sincere gratitude to all who replied! I received many clear suggestions and guidance that I had not thought of. I’m now trying to find a way to keep my mother at home. I do feel far more informed for dealing with the situation. 

In all 27 replies, I received =1= that was positive and encouraging about a nursing facility. I copied a few of the posts below.

The main points from the replies:
1. Don’t believe what you are told by the ‘sales’ people when finding out about the facility.
2. Do not expect the facility to be good at special diets of any kind. Celiac and diabetes diets are both poorly done.
3. ‘Drop in’ to the facility at meal time to see what the patients are really fed, meet the kitchen staff. Find out if the food is prepared on site or brought in already prepared. You’ll have to educate everyone, with varying results. Make friends with the kitchen staff—all the staff. Once your family member is in the facility, drop in all the time, different times, to see what’s going on. Bring food as much as possible. 
4. Don’t bother with meeting the dietician; they are not who really get the food to the patients. You want the kitchen staff.

See a previous summary of this topic in the archives #076164 from 6-22-09. I’ve copied many of the replies I received below:

Here’s the positive experience— >>The staff I worked with was very helpful.   Mother first went to assisting living, and they had good manuals to go by.   They would not take any food from home, but would take manufactured goods/sealed.   They invited me to eat there all the time, and I did not get a hit anytime I ate there.   
      When she had to go to the nursing home, again they were very helpful and understanding.  (alzheimer's)   I would take sealed food to make sure she had plenty of snacks and variety.  At the nursing home there was a dietitian that took care of her meals.  
 Again overall a good experience if you have to be there. 
      Good caring staff is everything !!!    I hope you get the right ones.  
      When I thing about it now,  it makes me want to go back and give them a big bear hug and some money.   They  were  great.<<

Here are the rest:

>>>My suggestion is... Don't believe them. 
I've been a supervisor at four different SNFs. It's extremely rare that they grasp the concept of GF, let alone are able to put it into action. The only one I found that approached actually being GF was in a heavily Jewish section on the New Haven/ Woodbridge town line, in Connecticut. They employed an actual chef, and had a Kosher kitchen. Most SNFs feed the residents on a few bucks a day, and that's about the quality of the food. They talk a good game, though! It's only when you get into the kitchen that you  see the contamination.  <<

>>Nursing homes should be well versed about Celiac, considering the gov. sends each Head Dietitian a supplement yearly, if they read it.
I would ask about the bread products and pasta.  Toaster?  Gravies? Grill?  Snacks?
They like to load residents up with Carbs, so they sleep a lot.<<

>> Find out if the kitchen is run by the facility, or if they contract it out.  If it is contracted out, which is a normal situation, then try to find out who the contractor is and make an appointment with their manager when they are on premises. <<

>>You are asking an EXTREMELY important question!  I would like to see a summary of responses.
After fracturing my ankle,  about 10 yrs. ago, I had to be in a nursing home --it was  a skilled nursing facility =  Altho assured by the facility that they could and would handle the gluten-free diet, I had to leave the facility early , because I routinely was served food that was far from gluten free, and there was almost nothing left for me to eat.  The kitchen staff was largely non-English speaking, and also  was not at all knowledgeable about gluten.
I hope things have changed a lot since I was there, and in similar facilities all over, but I'm not optimistic, because of my experience.<<  (my note: this is Alabama. We’re just now getting restaurants that are doing gluten-free. It’s a backward place.)

>>Drop in at meal tines if you cab and talk with the head of the kitchen and cooks if possible. Find out about soaps and shampoos if necessary. We found we had to do a lot of educating. <<

>>Ask the facility for the list of complaints of record.  This may be a complaint log or register.  This would give you tips on the standard 
of care for the facility.  You might ask, (they are not required to tell you), if they have been sued by patients or their families.  
 
If they do not know or do not provide the information.  Litigation records are a matter of public record.  Look them up.   (some items may include invalid-patients with bed-sores --meaning the staff is not moving the patients to prevent the bed sores to begin with).
 
Like you, I think the sales experts at these facilities will tell you anything just to get you to sign up with them.  They work in the 'front-end' and not in the 'back-end' where the rubber hits the road.  The sales experts know that once a patient moves in, rarely will they ever move to another retirement location.
 
Also ask about the variety of GF food offered that is GF.  
Ask if they have a dedicated GF menu to show you.  Also ask how do they handle GF food in relation to other foods in the facility.  (dedicated cooking equip etc)<<

>>The dietitians and management will assure you they can provide GF meals, but you probably won’t get a chance to talk to the cooks or servers.  My experience is that there is so much turnover that no matter who in the kitchen you talked to one day is gone the next.  The best of all worlds would be if there was a cook who had celiac disease.  Out of about 10 different celiac members, none were happy with the outcome once they moved in.  I have read about facilities that are totally GF and house about 10-12 patients.  Seems like one was in Arizona. <<

>>I’d suggest meeting with the head of the dietary stuff, the head of the kitchen….and make sure you have doctor’s orders that her meals be gluten-free. The problem is if she can’t monitor it herself.  The help they get in nursing home kitchens includes people who are ill equipped to do any other kind of work, and sometimes, there are volunteers.  So my mom and my MIL got other people’s trays quite often.  Or they were given what they could not eat, during parties.  My mom had dementia.  My MIL was clearheaded.  MIL didn’t need a special diet, but gave up sending her meal back, when they gave her the one of someone who needed it.

If you have a chance, make the rounds and be downright pushy, but sweet.  Make sure they know it’s medically necessary.  Perhaps, she can wear a $20 rubber MedicAlert bracelet or one of those rubber band types, that informs them of her diet.<<




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