At a Christmas family reunion over a decade ago, my husband and I overheard my grandmother repeatedly ask my grandfather how many children they had together. ‘Pito,’ he immediately answered.
Around 30 seconds later, she asked again. ‘Seven,’ he replied. When the question came a third time, Lolo answered, ‘7-Eleven!’
Each response was met with surprise and disbelief from Lola. By then, her dementia had already progressed significantly and she hardly remembered her children and grandchildren, except for those she was living with. Lolo, meanwhile, never lost the sweetness in his voice or the smile on his face. My grandfather, whom I had never really known as a jokester, had found a creative way to respond to the same question she would ask him a hundred times in a day. It’s as if he challenged himself to give her a different answer each time.
I find myself returning to this memory as the country celebrates All Souls’ Day. While the occasion invites us to remember those who have died, it also makes me think of families whose experience of grief begins long before death.
Dementia affects a person’s memory, thinking, reasoning, and behavior in a way that impairs a person’s ability to carry out daily activities. While there are different types of dementia, the most common known cause is Alzheimer’s disease.
According to the World Health Organization, 57 million people were living with dementia worldwide in 2021, with nearly 10 million new cases occurring each year. While research has made significant strides in understanding the disease better, right now, there is still no cure that can repair or reverse its progression.
Behind these figures are the individuals and families learning how they can navigate the profound changes taking place.
A friend of mine, whose mom had Alzheimer’s, said that what was most difficult for him was losing someone he always turned to for advice, and losing her familiar expressions of love and affection. He said he felt guilty for missing someone who is still beside him, while simultaneously mourning the loss of time and opportunities he had with her before the disease progressed. However, it was only after she passed that he was able to really admit all these feelings to himself.
‘Ambiguous loss,’ a concept coined by family therapist Pauline Boss, helps explain this experience. Although they are still present, familiar aspects of the relationship have changed and are becoming increasingly harder to access. This leaves their loved ones with an ongoing, unresolved loss that does not come with a traditional feeling of closure.
Some people may also have anticipatory grief. This refers to the sorrow that one feels over the further losses and eventual death they expect. For caregivers, that sorrow can also overlap with exhaustion, making all the emotions even more difficult to process and understand.
Making room to acknowledge that grief can help families adjust their expectations and find new ways to connect in the present. Missing what has changed need not prevent us from finding meaningful companionship in what remains possible.
For Lolo, that meant answering the same question with a little humor and a great deal of tenderness. Lola might not remember the answer, but he continued to give her his attention.
I am conscious, however, that I witnessed only a small part of what spending time with Lola required. That Christmas exchange could not tell me everything about his experience or his private grief, and it would be unfair to turn it into a standard of endless cheerfulness that every loved one or caregiver must meet.
What is clear is that caregivers need help and support, too. Talking to a therapist or joining support groups can provide space to process grief, guilt, and frustration with people who understand what they are going through.
The Alzheimer’s Disease Association of the Philippines (https://www.alzphilippines.org/) provides dementia education, caregiver resources, referral information, and support groups through its ADAP CARES program. Such support means a lot for families who may otherwise feel they have to manage everything on their own.
When my grandfather died in 2015, Lola lost the companion who had patiently answered her questions. When she eventually passed away five years later, there was profound sorrow, but also comfort in our faith that she would be reunited with the love of her life.
It is never easy to lose a loved one. Perhaps, for some of us, it is just as painful to feel that we are slowly losing someone we love while they are still physically present.
This All Souls’ Day, I pray for those who have died and for all who are grieving someone, whatever form their loss may take.