Diagnoses and Aftershocks

My mom thinks my grandma’s Alzheimer’s began to develop as early as 2008. The illness's appearance became more clear when my grandpa suffered a massive heart attack in 2012 and my grandma, under immense stress, became paranoid and agitated with my whole family. My grandpa took about six months to recover in hospitals and spent the next two years in and out of various procedures to maintain his cardiac functions. As is cited in many pieces of literature regarding the health impacts of caregiving on caregivers, my grandma did not receive much regular medical attention (Levine, 2014; Montgomery, 2009; Han et al., 2019; Hernández et al., 2021) during this time as she was preoccupied with my grandpa’s recovery. Throughout these years, her disease and its symptoms progressed without diagnosis or treatment. In 2016, she was officially diagnosed with moderate Alzheimer's. 

Both of my grandparents understood Alzheimer’s as a disease that locks people away in nursing homes and refused any clinical support throughout these years in fear of institutionalization and instead pretended that life was normal, all while my grandpa was filling in for my grandma’s household roles that she was no longer able to do. My grandpa’s behavior at this time and his fulfillment of duties my grandma used to have full control over such as taxes and finances suggests that he knew things were not normal, but could not come to terms with this. Over the years, he took on more and more responsibilities in their home with my family and me frequently visiting them to help with these tasks. Our involvement was basically the most amount of support he would accept, and has never been interested in support groups, available respite services, or even home aids. He was also never encouraged by my grandma’s doctors to seek this support. They never informed him of the behavioral and psychological aspects that would progressively increase over the course of the disease, even though studies have shown that these symptoms of the disease are often more difficult for caregivers than physical symptoms of the disease (de Vugt et al., 2005; Hernández et al., 2021). 

Like many caregivers throughout the country (Koca, 2017), my grandpa had the belief that my grandma’s doctors would give him all of the information about Alzheimer’s that he needed to know to care for her. As her symptoms progressed, my grandpa was met with experiences of Alzheimer’s that were not explained to him as aspects of the disease process. This lack of information made him extremely confused and agitated about why his wife was suddenly unable to function on her own or hold the conversations she used to. His mental health continuously worsened as he was exasperated and angry at symptoms like incontinence that he didn’t know to expect or how to care for. My family gave him information and tried to explain these symptoms to him, but as someone who understood physicians as the only valid source for medical information, he never accepted our non-professional advice. 

With limited knowledge of the disease paired with symptoms that quickly progressed in intensity, the caregiver burden became too heavy on my grandpa to support without live-in help. In 2020, he and my parents decided that my grandma and grandpa would sell their home and move in with my family for care support. At the times that my grandpa felt the most enraged about how my grandma would act or the help she needed were the times that both of my grandparent’s qualities of life were the lowest. If a physician had at least suggested that he look for more information about the disease back in 2016, he wouldn’t have felt such a fracture in the relationship with his wife. His understanding of Alzheimer’s impacted every moment that we provided my grandma with care and would often cause arguments about how to care for her. If I could change anything about the past six years, I would make sure that a physician gave my grandpa information about living with Alzheimer’s at some point throughout the disease course, as he only began to understand it through the eventual explanations of our hospice team. Even through the difficult times of caregiving, caregivers deserve to be provided with the information that can improve their quality of life (Baumgarten et al., 1992; de Vugt et al., 2005). Without being given ‘expert knowledge,’ my grandpa was never able to see the potential that caring for my grandma offered and often wasn’t able to participate in what ended up being incredibly meaningful moments between my grandma and our family. The professional component of our care unit failed my grandparents in such a way that created a foundation of tension throughout the rest of our caregiving relationships. 

It was within these tensions and small moments that I saw what could be generated from my care relationship with my grandma. I noticed my grandma understanding that she had forgotten something, but still being unable to remember it. I heard the jokes that she would quietly make. I saw the choreography that she developed and preferred in her dancing. These interruptions of tension became moments that I was completely fascinated with. I was fixated in finding the keys that allowed me into her moments and realities. The most bittersweet experience from this was when my grandpa finally started to understand the disease through the explanations of Alzheimer’s by the hospice team who had come to our home to enroll my grandma. The last eight months my grandparents had together were sweet and meaningful, but they deserved to have always had that relationship uninterrupted by misunderstandings of the disease and misplaced resentment toward my grandma who was trying her best.