Amyloidsis and Depression - What Does the Diagnosis Mean?

As Dad had written, finding out that Mom had a postmortem diagnosis of amyloidosis was a tremendous relief for him. It helped explain the behavioral and cognitive changes he saw daily over the last several months. For my sisters and me, this diagnosis introduced a new set of concerns.

Until last week, none of us had heard of amyloidosis. Once we learned Mom had it, we all shifted into research mode. (This seems like a common response for me following death; I had no control over whether or not someone I love died, but I can have a sense of control by gaining knowledge.) One of the most troubling discoveries we quickly made was the potential hereditary component of the disease. Suddenly, we, as Mom’s children, wonder if we are facing a middle-aged death from a disease that could rob us of our physical and mental health.

In addition to questioning whether we carry the mutated gene for this disease, I also wrestled with my understanding of Mom’s death. As far as we know, Mom was unaware that there was an organic component to her struggles. Without knowing there were structural changes, she felt like she was losing her mind and was “broken.” Since she took her own life and did not die as a direct result of the disease, was the amyloidosis or the depression more to blame?

For the three weeks immediately following Mom’s death, many people approached me with their condolences and frequently asked if Mom had been sick. The story I told people went like this: Thank you, I’m sorry too. She actually killed herself. She had been depressed for years and never recovered from Isabella’s death.

[Side note #1 – My filter seems to have disengaged when I tell most people about Mom’s death. Even if people don’t ask about her cause of death, I often feel an almost compulsive need to tack on the bit about “she killed herself.”]

[Side note #2 – Dad keeps emphasizing that “she took her own life” is a much gentler way of bringing up the manner of Mom’s death. However, I usually cannot remember this phrasing on the fly. And most days it felt like she killed herself, not that she simply took her own life.]

As much as possible, I was coming to terms with the fact that my mom had had depression and this led to her death. With the new information, I’ve had to reexamine my narrative about her passing.

While my thoughts are still convoluted and difficult to articulate, currently, I am more convinced that she took her own life due to the depression than due to the effects of the amyloidosis. It appears safe to assume the amyloidosis impacted her brain’s ability to benefit from the prescribed medication and the EMDR therapy. And although the depression was certainly worsened by the amyloidosis, the protein buildup on its own seems unlikely to have caused her kill herself.

In addition, an estimated 50-60 percent of people who kill themselves also have a diagnosis of major depression. For Mom’s age group, it is the eighth leading cause of death. Particularly in the month before she died, she had many of the warning signs for those with depression contemplating suicide.

One of the mentioned triggers is a “life crisis or trauma.” The death of her first grandchild would certainly count as a life crisis and trauma. My prior narrative included Isabella’s death when explaining Mom’s; was this no longer true since she also had amyloidosis?

These disjointed thoughts would again shift if we discovered that she had visited a neurologist and never told anyone. If she had known her brain demonstrated physiological changes and had received a diagnosis of an incurable and fatal disease, I would have almost expected her to take her own life, especially since she was miserable.

I don’t have answers. I don’t know if I need to have tidy answers that I can wrap up with a bow. Regardless of the interaction between diseases, Mom is dead. By her own hand. Although I seek to find control in answers, I have seen over and over again this year that any illusion I have of control is just that – false. I know who is in control of my life and I pray I can learn how to walk in the dimly seen present while trusting that God is who he says he is – good, sovereign, and trustworthy. (Even in my conclusion, I’m seeking to wrap up elements of my life in a package I can comprehend.)