When I think about my late grandmother, I remember the spark of humor that twinkled in her eyes, the wise sayings that she recited on a daily basis, and the knowledge that she had Alzheimer’s disease. Though she was diagnosed with Young-onset Alzheimer’s disease at age 64, to the unwitting stranger she seemed like a jovial and bold old lady. She had been diagnosed after suffering a mini-stroke while scuba diving, and another while resting at her home a few days later. Then the memory problems started to become evident and too significant to brush off as “part of aging”. I was too young to notice all the changes, but the level of impairment was such that she could no longer live alone.
According to the CDC, Alzheimer’s disease is the most common type of dementia in the United States. In 2021, over 6 million Americans aged 65 and older are living with Alzheimer’s disease, and nearly two thirds of them are women. It’s currently listed as the 6th leading cause of death, though the NIAH suspects it’s actually in third place.
Dementia is the term used to describe a cognitive decline that creates a significant disruption in a person’s daily life. The loss of memory and cognitive functions eventually result in language and visuospatial skills deficiencies; which are often accompanied by behavioral disorders such as apathy, depression and aggressiveness. The rate at which Alzheimer’s disease progresses varies. On average, the Alzheimer’s Association estimates that a person can live four to eight years after being diagnosed, though some live much longer than that.
My grandmother lived an additional twenty four years after being diagnosed. For the first thirteen years, she was able to live with one of her children for a few years at a time. Afterwards, she mainly lived with my family, and my mother was her principal caregiver. I was able to witness her progression through all three stages (early, middle and late) over the years. As her level of care increased, I also noticed how the disease’s progression took a toll on my mother’s emotional and mental health.
The CDC provides a list of 10 warning signs to watch out for (and a Spanish version) which includes: memory loss that disrupts daily life, challenges in planning or solving problems, difficulty completing familiar tasks, decreased or poor judgement, and changes in mood and personality. Seek further testing by a healthcare provider if you notice some of these signs. As my grandmother would say, “No hay peor gestión que la que no se hace”. Meaning that the worst thing you could do, is to not do something [for fear of it not working out as expected]. Early detection can make a great difference!
Despite the best intentions, caring for a loved one with dementia is far from easy. It’s estimated that more than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias. Over half of caregivers are providing assistance to a parent or in-law with dementia. Approximately 10% of caregivers provide help to a spouse with Alzheimer’s disease or another dementia. Caregivers often indicate love and a sense of duty when describing what motivates them to assume care responsibilities for a relative or friend living with dementia—this was certainly the case for my mother.
I remember how my grandmother struggled with meeting her basic needs of nutrition, sleep and hygiene. My mother had to be especially savvy about my grandmother’s finances, in order to help her cover some of her own medical and living costs. Of course, this was nowhere close to what was needed. In 2020, the total lifetime cost of care for someone with dementia was estimated at $373,527. Even these estimates are considered conservative. No wonder many families feel both the tremendous emotional and financial burden of caring for their loved ones. If you’re a primary caregiver, please make sure to care for your needs as well. The Alzheimer’s Association provides a great list of resources to help you both take better care of your loved one, and yourself.
There’s a popular salsa song, performed by Willie Colon and Hector Lavoe, called “Abuelita”. The song starts with the line “Recordando a mi abuelita, los refranes que ella decía me hacían reír” (Remembering my grandma,the sayings that she told me made me laugh). This is how I choose to remember my grandmother; believing that despite the trials and tribulations of her condition, she had a larger impact on my childhood and adulthood than she ever knew. So even if your loved one doesn’t remember your name, I hope you can notice the ways they can still enrich your life.
At the end, my grandmother forgot who I was; but she could tell I was someone who loved her greatly and cared for her well-being. Seeing the spark of life in her eyes turn into confusion was not easy, but I was comforted by the knowledge that somewhere in her spirit she knew she was loved. I hope you can find time to cherish the happy moments with your loved one; and if they’re already gone, I hope you take time to remember them—both for who they were before and after they forgot who they were. Afterall, isn’t remembering the best way to honor their lost memories?
This article was authored by Jamie Thordsen Monroy, one of Los Alamos Family Council’s mental health counselors.