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#CouldItBeCeliac

Long-term care struggles: Patricia struggled with constant cross-contamination in her nursing home.

#CouldItBeCeliac

Linda Sill

It was as if our family was living a nightmare.

It began when Mom’s health declined to the point that she needed to go into a retirement home with medical assistance and later into a long-term care facility. This is where her health and her Celiac journey took a turn for the worst.

Mom was diagnosed with celiac disease at age 70. While we initially cried and struggled at first, thanks to her positive attitude, razor-sharp focus on dietary management, and help from support networks, we seemed to manage.

– Linda’s mom, Patricia Jean Adams

Navigating Celiac Disease

She was already used to living with Type-1 diabetes from a young age. She often said,

“Linda, hold your head up high and prove people wrong when they say you cannot do things because of your health issues. Make changes. Make a better life for yourself and others.”

– Patricia, Linda’s Mom

However, what we weren’t prepared for was the dietary discrimination, marginalization, and downright fear when trying to find her assisted living. Our family checked out many retirement homes only to find out that most were not equipped, could not afford to, or were not willing to go the extra step to feed someone with celiac disease. There would always be cross contamination.

The features of comfort, location, programs and staff that one normally seeks in a care facility suddenly took a back seat once we found out how difficult keeping her food safe would be in these facilities. It wasn’t easy and it was becoming increasingly expensive.

We were shocked to learn that we would have to pay the full fee, even though Mom would not be able to eat most of the food that was offered! The emotional trauma was now becoming financial as well.

We finally found a home that we were sure would work out. Mom was happy but apprehensive. Change is hard and luck was not on our side.

We soon became very concerned because what we saw and what we were told was very different.

Struggles with Gluten Contamination and Hospitalization

Mom was becoming increasingly ill and very weak. She became isolated and showed signs of being constantly cross contaminated. The home itself was a lovely place, but in the end the manager agreed that it was not as gluten free as we were led to believe.

Mom was admitted to hospital and then moved to a temporary location where her health started to fail even more as the cross contamination continued. She was now too sick to advocate for herself. Mom was hospitalized one last time and she never recovered.

After less than one year in care homes and hospitals, the damage to her digestive system was too extensive, her body too sick to heal. She died with her family by her side.

Celiac Disease does not discriminate. People of all ages — your mom, dad, sibling or grandparent — because of age or circumstance might find themselves in a hospital or assisted-living facility where they cannot self-advocate or control the food they consume.

Change needs to be made now and you can be the difference. Together with Celiac Canada’s help, we can ensure no one else has to suffer like my mother did.

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