Independent Livings and Assisted Livings

[Nikki2777]

Yes, I'm 'asking for a friend'; no, really. But it's also made me curious about the options for myself when the time comes.

I've been managing my mother's care in an Assisted Living. Luckily, she can eat nearly anything. My friend, however, is struggling to find a place in our city (NYC) that can accommodate her mother, who has Celiac Disease. It's got me thinking about what my options will be in the future - likely 20 years away - but what will I do when I'm ready for a place like that?

From what I've read on older threads here, a few are saying residents are told to order the non-gluten option at their 'homes', or just avoid the bread! I'm very careful about cross-contamination now, even when eating at restaurants - does someone with Celiac just give up that concern in these places and take their chances? 

Can anyone share their experiences and if you mention a specific place, can you say the city or region? I realize much will likely change before I need it, but I'm wondering how it all works now.

Thanks!

 

[Scott Adams]

I'm surprised that care facilities haven't begun focusing on the gluten-free niche to grow their businesses, and it seems that things haven't changed very much since we published this article:

 

[Mari]

Hi Nikki - I went through a period after I was told I had Celiacs when I was 70 of looking for a place to go when I retired. That was in 2006. I wrote to several places mentioning that I needed a gluten-free diet and had some allergies and was very sensitive to chemicals. No replies to those messages. I posted in several Celiac forums but did not find others interested in planning for their futures. I realized that I would have to just continue on and do the best I could to remain healthy and not to depend on or be in a living situation that would be comfortable. Now I am 86, have retired and moved to a city with Taxis to get around and a hospital and better medical than where I had been living. Tell us your situation. Do you have family or good friends you could depend on to help you out if you become disabled?  

[Nikki2777]

5 hours ago, Mari said:

Hi Nikki - I went through a period after I was told I had Celiacs when I was 70 of looking for a place to go when I retired. That was in 2006. I wrote to several places mentioning that I needed a gluten-free diet and had some allergies and was very sensitive to chemicals. No replies to those messages. I posted in several Celiac forums but did not find others interested in planning for their futures. I realized that I would have to just continue on and do the best I could to remain healthy and not to depend on or be in a living situation that would be comfortable. Now I am 86, have retired and moved to a city with Taxis to get around and a hospital and better medical than where I had been living. Tell us your situation. Do you have family or good friends you could depend on to help you out if you become disabled?  

Hi Mari - 

Thank you. That's a bit what I'm afraid of. My husband I talk about moving to an Independent Living at some point when we tire of cooking and shopping for ourselves and want more/easy social interaction and less home maintenance. I already get bored with cooking for myself sometimes. And no, I don't really have family in this city to help out eventually. No idea where my children will go when they're fully launched, but I would love to be somewhere I can be social as long as possible and not have to rely on them.

Hard to believe, with all the restricted diets out there, that IL/AL facilities or chains wouldn't have an option for people like us! Maybe I'll start making some calls out of curiosity.

 

[Mari]

Hello again Nikki  - I think you and your husband are doing well. As long as you have an income you can put aside enough money to cover your expenses when you decide to retire. There are some good options. Some of the people in my age group and younger have gone to live in apartments in Senior living facilities. They have kitchens and all that you would need to prepare your own food. In addition some of them have assisted care when needed. I think you can buy in or rent your living space. Usually they are called Senior Living and most cities have one or more depending on population. They do tend to have long waiting lists. These options are not what I was able to afford when I retired or even now. There is a nice Senior living facility here where I live in Lake Co., CA. The people live in small duplexes, one story but I don't thein it has a dining room. Across the street is the Senior Center where lunches and Meals on Wheels are available. Not gluten free though. Good Luck. It is so very good that you are planning ahead.

[Scott Adams]

I think a bigger fear for most celiacs, myself included, is what happens if we end up in a full care facility, where things like food are out of our control? 

[Nikki2777]

Thanks, Scott. I'm actually less concerned about that as it is my understanding that Nursing Homes, being medical facilities, have to provide a safe diet (though the food is probably inedible). I imagine it's kind of like the pre-packaged horror show that is airline gluten-free meals. Someone can absolutely correct me if I'm wrong.

 

For me the issue is when I want the social benefits of an Independent/Assisted Living where you eat together in a dining room, and also to not have to cook and shop for myself.

When I get a chance in a few weeks, maybe I'll start calling around to see what's possible now, just for research. Will report back here!

 

[Scott Adams]

From what I've heard nursing facilities are pretty bad at providing gluten-free food to those who need it.

[knitty kitty]

Perhaps we should start our own Celiac City where gluten is not to be found for miles around.  

Gluten free restaurants, grocery stores, bed and breakfasts, retirement homes, amusement park, etc. and no worries!  

My local hospital can't get a gluten free/dairy free diet right yet, so nursing home care is scary.  

Do let us know what you find out, @Nikki2777!

[Nikki2777]

Thank you.

Scott - I didn't know that. Very scary. Basically like making a choice to hurt your residents.

And Knitty Kitty (great name, btw) I would definitely be on board for that, though I don't know if I could convince my gluten-eating husband to move there!

Hope to get started on making calls soon - who knows, maybe there's a business opportunity here! 🙂

 

 

[Katerific]

My mother, who had Celiac, lived in an assisted living facility until her death in 2021.  When she moved in, the facility director said the state of Nebraska doesn't require them to provide medically specific diets and that if mom wanted to move in, we would have to provide her meals.  My sister and I made all her meals and delivered them to the facility for 7 months.  She lived with me during Covid's lock-down in 2020 for a year but felt isolated from the activities and people at the facility, so we moved her back and delivered her meals.  It wasn't as hard as it sounds, but a little galling that we had to pay full-price plus pay to make her meals.

[Scott Adams]

Thank you @Katerific, and this is what I've heard in past posts in our forum. As far as I know there are no regulations that require nursing homes to cater to special diets, but there should be.

[Nikki2777]

Thank you, all. It's disappointing but good to know, and definitely something I'll want to dig into over the next few years.

 

[joeyfulnoise]

Back in 2008, my dad decided he wanted to live in an independent living facility. He found one that sounded good, called and talked to them, arranged for us to take him for a visit. This was in the outskirts of Pittsburgh. While doing the tour, I told the guide that he was a Celiac and was assured that would not be a problem.  Dad liked the place, they had an opening, so he put down a deposit and made arrangements to move the first of the month. He only lasted at the place for a few weeks - they could not accommodate a gluten free diet, and he had several embarrassing accidents in the dining hall.  We moved him back to his house.  I was mailed a survey about the place, which I gladly  returned.  Almost immediately, I received a phone call from the people who owned the facility.  They profusely apologized and said we never should have been told that gluten-free was available there. They had family members who were Celiac and absolutely understood how strict the diet needed to be and that there was no way they could adhere to that level.  They owned several facilities throughout the state, and promised to follow up with all of them to do some Celiac education that would ensure no one else was ever mistakenly told they could be accommodated.  Thankfully, my dad's house was only a half mile from us, so we were able to care for him until he died at age 93.  

Yes, this is a worry that periodically goes through my mind. Should I need facility care, could we find it?  We recently moved to a one floor house and have kids and grandkids nearby and I am praying this will be adequate for my needs!

[celiacCA]

I am a long term celiac ( Scott Adams’ website one of my earliest sources  30 years ago)

We are looking for continuing care.

We found a place that looked good, but just got copy of 3 weeks of menus. It had the usual broiled fish and chicken.

I toured the kitchen ( would request this ) for sources of cross contamination. My home kitchen is not totally gluten free- separate toaster space , separate cutting boards for my spouse, but very very careful. I am not clear this  is possible. It could be done, but only with very careful supervision. There is a lot of staff turnover in any facility.

Anyone have suggestions?
For hospital situations would insist on speaking to the dietician.

Cedars Sinai in LA Kosher food is also gluten free; not great, but safe. If you mention diarrhea a vomiting  you will get easier access to dietician. No one wants to clean up the aftermath of exposure.

Another local hospital  I stayed in for brief surgery had gluten free, but choices very very limited. I got them after speaking to dietician. You may need to have someone bring in bread, rolls, etc.

I also keep the Schar vacuum packed rolls/ bread on hand after evacuation for fires.

Sorry for digression- any suggestions for senior independent living anywhere would be appreciated.

 

 

[Scott Adams]

I'm afraid that there is no easy solution for this issue. Finding safe senior independent living options for individuals with celiac disease can be challenging, especially considering the potential for cross-contamination in shared kitchen spaces. Here are some suggestions:

• Research Facilities: Look for senior living facilities that prioritize food safety and accommodate special dietary needs. Some facilities may have experience catering to residents with celiac disease or gluten sensitivities.
• Ask About Policies: Reach out to prospective senior living communities and inquire about their policies regarding food preparation and accommodations for residents with dietary restrictions. Ask specifically about their understanding of celiac disease and how they prevent cross-contamination in the kitchen.
• Visit the Kitchen: If possible, request a tour of the kitchen facilities during your visit to the senior living community. Observe how food is prepared, stored, and served. Look for signs of awareness and adherence to gluten-free practices.
• Speak with Staff: Have open discussions with staff members, including chefs and kitchen staff, about your dietary needs and concerns. Ask about their training in handling gluten-free meals and whether they have experience accommodating residents with celiac disease.
• Bring Your Own Utensils: Consider bringing your own cooking utensils, cutting boards, and kitchen appliances to minimize the risk of cross-contamination in shared kitchen spaces. Some senior living communities may allow residents to use personal kitchen items.
• Explore Meal Delivery Services: Look into meal delivery services that specialize in gluten-free and allergen-friendly options. Some senior living communities may allow residents to opt for meal delivery as an alternative to communal dining.
• Educate Others: Take the opportunity to educate staff and fellow residents about celiac disease, gluten intolerance, and the importance of avoiding cross-contamination. Raise awareness to foster a supportive environment within the senior living community.
• Consider Independent Living Options: Explore independent living options that offer private kitchenettes or in-unit cooking facilities. This allows greater control over meal preparation and minimizes reliance on communal kitchen spaces.
• Consult with Healthcare Providers: Seek guidance from healthcare providers, including dietitians or nutritionists familiar with celiac disease, to discuss strategies for maintaining a gluten-free diet in a senior living setting.
• Stay Vigilant: Even in facilities with stringent protocols, it's essential to remain vigilant about food safety. Continuously communicate your dietary needs with staff, double-check ingredients, and trust your instincts if something doesn't seem right.

By taking proactive steps and advocating for your dietary needs, you can increase the likelihood of finding a safe and supportive senior independent living option that accommodates your celiac disease requirements.

[celiacCA]

Thank you for the information!

[brian1]

Gluten free foods are plentiful in my country but they are mega expensive you don't get any extra benefits to compensate 

[celiacCA]

We are still looking for senior living!

The places that seem best capable to adapt are those who also do Kosher . These facilities  understand the need to keep food separate to prevent contamination.

You still  must say  every  meal that you need gluten free.

We were looking in Boston area and around Los Angeles- Boston seemed better disposed to this. There is a 2 year waiting list at most of those facilities.