Eating changes were among the first to be noticed. Mom could not tell the size of a piece she had cut and would try and stick half a piece of chicken in her mouth all at once. For someone that drilled us with table manners, this was a big change.
But it was also an easy fix. We would cut her food into the right size piece. Then we found a fork and spoon with a better grip, a plate with a lip that helped keep food on the utensils, a plate with a rubber bottom that did not slide.
These changes were hard for my Dad to see but he was stubborn about changing his routine. Mom and he would eat together regardless of the changes. We found colorful aprons and bibs for adults. We served finger foods as that was easy for her to manage. And we still took her out to restaurants and coffee houses.
Mom liked to set the table but it was a random installation of art with cutlery and plates all over the clock face. She still tried to wash and dry dishes. After she was done when she was not looking we would put the dishes in the dishwasher for a second cleaning. I would call her efforts, ‘the prewash’.
The kitchen had always been Mom’s domain and seeing others work there without her was difficult. At first, we would do it all for her until I finally understood that this was not what SHE wanted. We were taking over not helping out.
Long into the disease I would have her mixing batter and even stirring the pot carefully watching that she did not put her hand on the element. She was still contributing and doing her job.
So long as you are alive, LIVE!
My Mum eats less and less. She won’t chew, swallow and food is left inside her mouth. I am so worried and scared. Any hints on eating and nutrition?
Dear Christine, I thought I had lost your message on face book so I replied there but now I can also reply directly to you. Below is what I posted.
“Someone reached out to me yesterday and I needed time to form an answer. I then managed to lose their message so I will post a reply here and hope it reaches those that need to read this story. The question was regarding eating and rather the lack of it. This person’s mother was no longer swallowing and was holding food in her mouth which would be a choking hazard. What should she do???? I don’t know what she should do but below is my story on this topic.
Mom was palliative at this stage but still enjoying music, sunshine, the movement of her chair and good food. A basket of fresh raspberries disappeared in minutes, a bowl of her favorite ice cream, gone. We still fed her healthy soups but also spoiled her with her favorite treats. And then she stopped swallowing. We would pop a plump juicy blueberry in her mouth and it would just sit there pocketed in her cheek. My care team had two different approaches. One would almost force Mom to eat all the goodness she had lovingly created for her while the other would offer yummy treats but honor Mom’s refusal to eat or swallow. They both acted out of love and compassion. But when I look back I think not forcing Mom to eat was the right course of ‘inaction”. Some families ask for feeding tubes but as hard as end of life was for me there was a time when I need to respect the choice of my Mother. Even more so if those choices were involuntary.
I am no expert but I understand the method to swallow gets forgotten by the brain and eventually the method of breathing is lost. There were tiny sparks of love and tenderness even the day before Mom died but it was time for me to let her go. For Mom stopping to swallow was the beginning of the last months and I took that as an opportunity to sit by her side as much as possible and come to terms with the ending of her life. It was a time of great beauty and peace and I am glad I did not spend those precious months fighting to keep her alive.