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