Something has changed. She chews the food I have just given her once or twice and then stops. To my surprise and desperation, she has stopped chewing and, with an inquisitive gaze, looks to one side and another, while the food remains immobile in her mouth. It is as if she has lost the automatic reflex to chew and swallow. I have to give her a little fluid so that this first impulse, which still remains, reactivates and finally my mother swallows everything in her mouth.
And all of a sudden fear, that old familiar feeling, rears its ugly head again. The fear of once again facing another backwards step on the descending stairway that Alzheimer’s represents in a person’s life. My mother, who I now feed as she used to feed me so many years ago, who watched me grow as I now watch her fade away. And I often get so frustrated in my determination to ensure she retains the faculties she has left. She, unaware of my fears and frustrations (or maybe not…) looks at me, smiles, then looks away, frowns, flitting in and out of her world and all of a sudden, within a fraction of a second, our eyes meet and we enjoy an instant of true connection.
She knows nothing of my fears, which change as the months and years go by. Looking back, I see I went through the fear of her no longer being an independent woman, the fear that she would stop walking, the fear that she would no longer recognise my brother or me, the fear that she would stop talking… All that has already happened and I now face new fears, the fear that she has forgotten how to eat.
At the care home my mother has lived in for the past five years, I witness this next phase that is now looming. Other residents who have already slipped down this step: choke when they eat, the food enters their airways and causes them anxious moments of suffocation. Others have a catheter inserted into an opening in their abdomen, which takes the food directly in their stomach.
I recently discovered that my brother and I can decide, when the times comes, about whether to feed my mother through a catheter or not. My first reaction was once again surprise and fear: will I soon have to make a decision that means life or death for my mother, perhaps within a few months? How am I going to decide one way or another? If we opt to refuse the catheter we will watch her die, by suffocation or starvation. If they insert the catheter, we will be prolonging a life with even less quality that she has had until now, as well as subjecting her to a surgical intervention and a very tough adaptation period.
This is one of the many painful and decisive moments in the life of someone with a family member suffering from Alzheimer’s or similar dementia. One of those moments in which we most acutely feel the loneliness and despair of accompanying and caring for someone we love so much. And it is one of those moments in which we need not only medical information to provide us with clarity on the progress of the disease and its consequences, but also the support of someone who can help us take these decisions in accordance with our values. Because no-one is going to tell us what is best for our loved one. What is best for my mother? I want to avoid her suffering, of course, but what is the best way to do that?
Many people will advise us, with the best of intentions. But at that time, us family members, the ones who must make these decisions, need to listen to our own voice and trust our own wisdom, the wisdom that is born from the lives we have lived and the deep love we feel for our loved one… and for ourselves. That is why, more than advice, we need someone who is able to listen to that wise voice that lives inside us and which sometimes gets drowned out amongst the fear, guilt or, simply, the sadness and pain.
I lift the spoon again, ¨come on mum, it’s really delicious¨. My mother looks at me and smiles, and opens her mouth, and then swallows… and I, with something as simple as this, am simply happy.