Dementia and Learning to Hold the Ambiguous Loss of Caregiving 

I was 21 when my dad was diagnosed with dementia. My maternal grandma was already some years into her Lewy body dementia, but I didn’t understand the feelings of ambiguous loss. I definitely didn’t think of myself as a caregiver, until I had no choice but to embrace the role. Now, at 25, my life is fully involved in these two elders and all that comes with their illnesses.

Dementia and Learning to Hold the Ambiguous Loss of Caregiving

My dad’s decline from frontotemporal dementia has been swift in the last four years, though looking back, my mom and I can see signs long before the doctors’ appointments began. An only child experiencing the pivotal years of my late teens into early twenties, I watched my “Papa Johnny” slowly begin to lose control over his life as a talented mechanic. His motor and social skills, task sequencing, and spatial awareness broke down. He isn’t forgetting who close people are, rather, his body and brain have progressively disconnected from one another, leaving him unable to function on his own, deeply frustrating for his independent, introverted self. His hands tremble, his body is stiff, he requires constant guidance and supervision, and he has language aphasia. He was never a talkative person, but at this point, he struggles to speak coherently, and if he attempts to form a sentence, it’s fragmented and confusing, often blurted in panic and agitation. Moments where he does speak a clear line or show his old sense of humor feel like miracles.

 Papa and Grandma experience their own ambiguous loss–bodies and brains here, unable to do what they once did. 

I’ve always been close with my parents, and I still lived at home when Papa was diagnosed, juggling time with him and my share of household upkeep between all the other threads of my expanding world. Now, growing care needs make it difficult for my mom or I to depart, impossible for me to plan a life on my own. However, visiting my Grandma Jeanie has been a strange respite–caregiving as a break from caregiving. Her variation of dementia also eroded much of her daily functioning, but she retains more coordination and speech, albeit less groundedness in so-called reality.

Seeing some of her forgotten special places in Detroit and Ann Arbor is a bittersweet avenue both for my independence, and connecting to who Grandma was before dementia, just like finding the ruins of the cabin Papa built in Quebec. “Entering into her orbit,” as my step-grandpa calls it, has reignited the special bond we had in my childhood. Affection and wisdom from Grandma’s dreamlike world of disorientation helps soothe my isolating position of being someone in their 20s living duplicated ambiguous loss.

Ambiguous Loss

Ambiguous loss can describe various experiences, but it manifests strongly when one is close with a dementia patient. It’s “losses that are unstable and fluctuating, evading finality and resolution,” as Kesstan Blandin and Renee Pepin write. It’s sobbing when Papa peed in my crochet yarn, when he stopped biking, then hugging him tight when he said “I got you.” It’s how Grandma still loves dancing and her colorful clothes, but I have to remind her who I am, who she is. Papa chokes up at his favorite Pink Floyd songs, but can’t put his shoes on or tell me which marathons he ran. Grandma can still brand my cheek with a lipstick kiss, gift me profound or silly phrases, but can’t carry on a linear conversation. My mom and I can’t count on Papa saying I love you back. There’s total role reversal: parenting my own parent. And Papa and Grandma experience their own ambiguous loss–bodies and brains here, unable to do what they once did.

“You spend too much time trying to figure out what life is…” Grandma Jeanie told me last winter, wandering in another dimension, here and not-here. “It’s called death.” She and Papa may not have reached death yet, but this is death of expectation of what our lives could look like. Death of me having a “normal” twenties. Death of my dad and I’s de facto book club. Death of my grandma answering the phone. And ambiguous loss goes beyond my relationship to these two important elders. It’s watching my mom and step-grandpa’s relationships with their spouses painfully change. Being held up by the words, food, hugs, listening, and caregiving help of many family and friends, while angrily trying to let go of the failures of others to accept or understand the reality of our lives. It’s gratitude for helpful healthcare professionals while navigating the complex and systemic brokenness of American healthcare.

Ageism and ableism are also systemic challenges playing into our experiences, both in attitudes towards our beloved care recipients and toward the capability of my mom, step-grandpa, and I to cope with the 24/7 responsibilities and emotions. Burnout, depression, anxiety, and other health concerns are very common among dementia caregivers, and in my family, our chronic fatigue and sensitive temperaments compound the impact.

 Every day has become a practice in being present. 

Blandin and Pepin formed a model of the cycles of dementia grief beginning in separation–the overall loss of the disease’s onset, or each small loss it brings in time. On large or small scales, recognition moves the caregivers through denial and resistance to a liminal threshold. I see this clearly in myself as my burgeoning grief fought with my burgeoning adulthood. Repression wasn’t sustainable, but neither were the rose-colored glasses of thinking Papa’s new quiet life was wholesome or welcoming friends’ calling him “cute.” Frustration at these infantilizing responses as Papa shifted into a state of increasing agitation, and meeting two young adults whose fathers passed from memory illnesses helped usher me into what the model calls re-emergence. Learning to sit with the big, agonizing feelings, giving it all permission to suck, because of course it sucks, of course it hurts. Acceptance, adaptation; as Grandma told me, “some kind of stretching in your livingness.” More and more I see the cycle play out as each new stage of decline sets in, and I let myself grieve that even the sweetest moments aren’t enough to make up for how hard it all is.

Every day has become a practice in being present. In feeling overwhelmed, in releasing avoidance and sugarcoating, resentment and self-doubt. I carve out time to write or care for myself in other ways to ease the burnout ever-present in my body, that which I see mirrored even more severely in my mom. I practice breathing through the overstimulation of Papa’s aggression; I acknowledge we can’t keep doing this forever, nor will we. I grieve the lives we all could’ve had, what Papa and Grandma could’ve been to the adult me. As the cycle of ambiguous loss loops, I practice the complicated hope for the future, and in this, I anticipate the different kinds of grief that will come when my family and I reach the end of these elders’ lives.