Making Meaning When Memories Are Lost

“Kate, I just got a call from Jane. She wanted to know whether we wanted to go…wanted to go to…”

My mother closes her eyes and scrunches her brows together as she says this, trying to find the word in her brain.

I ask, “Whether we wanted to go to church with her?”

As my mother then thanks me, I try to hide my unease.

Such exchanges – in which my mother forgot a word or an entire idea, and I completed her sentence – began when my mother was only 51 years old and I was a sophomore in high school. By the end of my senior year, my mother's condition had worsened to the point where she could not comprehend my daily notes, which only said when I would return home from school.

My mother emotionally changed during this time as well. She often became angry, especially when she attempted to deny her memory issues. Sometimes, though, her denial gave way to sadness, as she accepted her new truth: she had the memory struggles of a much older woman.

Both of these emotions – anger and sadness – underline how difficult my mother's memory problems were and still are, for her and for my whole family. We all struggle. We watched her undergo a staggering change – from an exceedingly intelligent woman who graduated magna cum laude from college to one struggling to read.

Despite these clear symptoms, help was difficult to find. At first, my mother attempted to empower herself and take action. She reached out to a local health case management organization that accepted her state insurance. This facility provided her with samples of trial medication to hinder the progression of her memory loss. Struggling just to pay rent, we could have never afforded these medications on our own.

My mother regularly took her medication. She did crossword puzzles. She felt hope – until the organization’s medication samples ran out. She came home from her appointment that day and declared that she would never go back.

Ultimately, my mother would need to visit a geriatric health center specializing in care for the elderly in order to get a formal memory examination and brain imaging. With state insurance, we waited for months to get an appointment. It took a full three years to get a diagnosis, though we were grateful to have the costs covered.

In the end, my mother was diagnosed with Frontotemporal Dementia (FTD), an illness I had never heard of before. This disease has no clear causes or risk factors, except for possible genetic inheritance, and no known treatments. It causes shrinkage in the frontal and temporal areas of the brain, often at a young age (between 40 and 70 years old), resulting in emotional liability as well as memory problems. As in my mother’s case, it is often initially misdiagnosed as mental illness. This is not necessarily the physicians' fault, however; FTD and certain psychiatric disorders manifest themselves in remarkably similar ways. This is a small reminder of how health challenges connect us all.

Once my family and I learned that my mother's true illness was FTD, we were overwhelmed. We were shocked by the devastating emotional changes that would come with FTD. We also had to learn how to navigate the modern health and legal systems. As my mother became increasingly dependent, and we focused on issues such as paying her bills and finding her a safe place to live, we had to simultaneously “prove” her disability in court. Now, my father has acquired the title “Conservator of Person” so that he, with input from me and my siblings, can make decisions on my mother’s behalf. This isn’t easy.

My mother does not recognize that she has memory issues. Without realizing it, she often acts like a child. She cannot participate in society, or even in our family community, like she used to; she cannot read the newspaper or even a simple word, and she lacks the emotional stability to maintain relationships. She craves attention from others, though, and will even have temper tantrums when she feels ignored. I have watched my mother stomp off to her room, sulking, many times.

One of these temper tantrums actually caused her first adult daycare center to dismiss her. The employees at the center felt that my mother agitated other clients against the caregivers. Perhaps she did, unintentionally; my mother does quickly become anxious and upset when she is not actively engaged in an activity or when her day deviates from routine.

She dislikes boredom and harbors a longing to be helpful – an impulse which often goes unrecognized by society. My mother is actually quite eager to perform simple tasks, like setting a table. She loves to feel usefully engaged and be an active participant in chores or activities.

I am grateful that my mother can actively participate in this way at her current daycare center. Here, she feels safe and full of purpose. My mother loves to attempt to help other clients. She often talks with them when they feel sad or upset, and this truly helps other clients to manage their emotions. My mother also participates in art therapy, pet therapy, and simple sport games, along with other clients. She really enjoys the social, recreational atmosphere that the center offers her.

At this center, my mother's caregivers provided her with a community and a purpose. They support her and treat her with compassion. To them, my mother is an adult woman – which seems to be a simple thought yet is actually a profound affirmation of a dementia patient, who is often stereotyped for immature behavior and simplicity. Dementia patients are adults, although they might act like children, and they deserve to be treated as such. Surrounded by such positive treatment and respectful attitudes at her daycare center, my mother has been happy in the past few years.

But with the passage of time, she now needs more intensive care. She struggles more, internally and externally. Her emotions have become quite explosive and unpredictable. Daily activities, such as bathing or brushing her teeth, have become lengthy and complicated exertions. My mother's daily hygiene routine is a particularly potent source of frustration and stress for her, and this exemplifies how her internal and external conflicts are quite connected. Dementia has affected my mother's physical abilities and personality, as well as her memory. With dementia, and perhaps with illness in general, the physical and the internal are often intimately connected.

This connection between the physical and the emotional can make care-giving a complicated endeavor. My father is currently struggling to completely care for my mother, when she is not in adult daycare. My mother definitely needs full-time health services, but they are difficult to secure. Because of the high demand for a spot in a specialty care facility, immediate placement is rare unless it occurs in in the aftermath of a hospitalization. My mother has been on wait-lists at multiple long-term care facilities for more than two and a half years. For now, I am incredibly grateful that my father and her adult daycare center are able to meet most of her changing needs and desires.

My family’s experience with FTD has changed me. Now, I am committed to advocating for greater health resources for all, especially the most marginalized. While my mother's illness is rare, I hope that my family’s story encourages others to work for broader change. I hope others contact legislators about extending health care access for patients and caregivers.

More generally, I hope my mother's story can also increase awareness that different kinds of dementia exist. Some dementia patients, such as my mother, can remain quite active participants in particular communities. Though individuals struggling with dementia have gone through much personal loss, they may retain their desire to be involved and help others. They can help others, and have much more to offer than one may initially think – if their community will accept them.

As a student in college, I imagine the possibility of experiencing dementia myself in the future. I know what it is like to worry about the shortness of life in the face of medical difficulties. In this way, I feel I am connected to many others – to other students and to other individuals in general – who experience and observe a myriad of health challenges every day. Despite the fragility of health, we can be conscious of all that we have and try our best to always value and make the most of our time.

Katherine Divasto is a member of the Harvard College Class of 2016 and is a Psychology major.