How many times do we receive the dreaded nursing home phone call, "Houston, we have a problem"?

My mom is 74 and in her 16th year with dementia. From time to time, as her disease progresses, the facility will call with an issue they can't resolve and we work together to put a plan in place.

We usually agree and come up with a plan that helps mom by combining our strengths as family members and professionals. We all bring something of value to the table. For family caregivers, it's important to keep an open mind, check our egos at the door and do what is in the best interest of our loved ones.

Mom recently had pneumonia. She recovered, but the illness took its toll and mom has advanced further into the later stages of dementia. Once she got better, our first step was a medication evaluation. We crossed our fingers. Mom could not control her chanting, which was repetitive and very loud. It was exhausting to watch, never mind how tired and frustrated she must have felt. Even worse, mom was having difficulty opening her mouth, making it hard for her to eat her already puréed food.

After a couple of weeks of the medications not working, the dreaded call came that mom was losing weight rapidly. We agreed to try and use a baby spoon, hire additional staff because it's taking longer for her to eat, try another medication change, and hope for the best.

A few days before Mother's Day, I stopped by to visit mom. She was having an awful day and the staff was very concerned about her weight loss. As usual, I brought mom her favorite foods: Fig Newtons and a bottle of Coke. Giving her a cookie was enough to distract her from chanting. Then she had a few more. I opened up the Coke and she was able to sip it easily through the straw. I think she drank about 10 ounces!

Mom then expressed that she was hungry, so I asked her nurse for a peanut butter and jelly sandwich, another favorite. The staff had had so much difficulty with mom during therapy that they were pleasantly shocked to see her gobble down the PB&J and drink her coke through the straw. We had a meeting, and my sister and I asked that with each meal a peanut butter and jelly sandwich and a Coke be present in case mom does not eat her puréed meal. Also, for a snack, Fig Newtons.

At this point, I had already signed papers to stop therapy because it was not working for them, however, I recanted. After that we had a nice visit with mom and thought everything would be good going forward. Surely it was not the best diet but it was better than mom starving, and being thirsty and dehydrated.

Fast forward to Mother's Day. Mom does not want to eat her pureed meal and I request a PB&J sandwich. Much to my surprise, the kitchen staff did not have permission to give it to Mom. Our plan was not documented and the occupational therapist did not agree that it was safe for mom to eat the sandwich.


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I was furious, to say the least, so I went to the nurse in charge, as well as the administrator. Mom had a peanut butter and jelly sandwich and drank her coke, no problem. We had a lovely rest of the day, but I knew I had some work ahead of me. I was back on Monday, ready to battle with an insecure occupational therapist. She had not evaluated mom eating the sandwich, so I insisted that she did. Mom ate it with no problem, no swallowing difficulties eating or drinking the Coke. The administrator apologized to me for the breakdown in communication as I expressed my disappointment in not being informed of the therapist’s disapproval of the plan. At the very least, I should've been called. I was also assured by the administrator that mom would receive her sandwich and Coke with each meal in case she does not eat from her daily planned menu.

It's important to keep the lines of communication open with the staff, but what is more important is that our loved one’s needs are met. Sometimes things get lost in the shuffle, and we (the family) are responsible for following up and making sure that the plan is carried out. Sometimes we just have to be LOUD! Don't be afraid to use your voice. You are your loved one’s voice, as they no longer can speak for themselves. Since the whole ordeal, mom has had some good days and some bad, but I am happy to say that she has gained some weight back.

And although mom has lost the ability to properly use the muscles in her mouth, on Mother's Day we were blessed with a treasure, a picture of her smiling. It was a good day.