Connie D. - What My Heart Can't Delete


Last week I was disqualified from participating in a large preventive clinical trial (A4) testing a compound from an "old" drug to find out whether it could be re-purposed to prevent or possibly arrest the progress of Alzheimer's Disease. I had almost made the cut - healthy, non-symptomatic adult 65 or older who had a first-degree relative (mother) who had died as a result of AD (late stage). The reason? The study director determined that based on my responses to some of the questions asked during the "mental status" interview, I was depressed and the drug company didn't want participants to commit suicide during the trial (all that wasted research money and time!)

To say that I was upset and disappointed is a colossal understatement. I had been counting the days until my 65th birthday, 23 months after my mother's death, to be the correct age to be part of something meaningful to honor my Mom's memory and help others destined to suffer, possibly including myself. I had been able to do so little during the course of her heartbreaking decline caused by this terrible brain disease.

I actually argued with the doctor, amidst torrents of tears, that I WASN'T depressed! Yes, I was SAD about the circumstances surrounding my mother's illness, guilty because there was nothing I could do to help her, frazzled by the arrangements that had to be made for her long-term care policy to kick in and help finance in-home care, frustrated by her firing a string of in-home caregivers, by her setting her kitchen on fire; the aphasia that robbed her of the ability to read, recognize numbers, or speak except in disjointed, almost undecipherable phrases; her gradual refusal to attend or practice speech therapy, the stroke clinic, or Alzheimer patient support groups. And there was the auto accident in her beloved 12 -year-old Camry,  which occurred while I was a passenger as she pulled into a parking space even as I screamed that she was going to hit the car in the next space! She did hit it, damaging both cars but absolutely denying that she had done so and was responsible.  

OK, I may have been somewhat depressed when my mom attempted to take her own life while still living in her home on a Sunday, the caregiver's day off. My sister, a nurse not working that day, found her on the floor and had her transported to the hospital, where the ER doc asked her if she meant to take so many pills - did she want to die?  My mother said "yes." In California, this meant an automatic transfer to the psych ward for evaluation. By this time, I had arrived from out of state and was visiting her there daily. Not an uplifting place, especially when everyone there is on suicide watch, and you realize that your mother is the only elderly person on the ward, that she knows she is sick, understands what is happening to her, and no longer wants to live. Before her discharge was signed, we had to agree that from that point forward, my mom had to have 24-hour supervision; thus the immediate search for a facility that could provide it because the in-home care became unaffordable. The assisted living facility we found had a memory care wing, but at the time the residents there appeared to be more advanced in their dementia than my mom did; and we felt that she would benefit from the "independence," activities, meal choices, and activities that the assisted living area would provide.

No, I wasn't really depressed. Even when my Mom stopped accepting rides to church or invitations to participate in any activities at her facility (what was the point? She was deaf in one ear and couldn't hear; and embarrassed because her speech could not be understood); insisted that my sister had stolen her car until we parked it outside the window of her assisted living facility so she could see it every day; or her paranoia about facility employees robbing her and breaking into her room when she wasn't there (resulting in her refusal to leave it, even for meals); accusing a male nurse's aide of somehow sneaking into her room at night to remove her nightgown, or my sister of taking money out of her bank account; or insisting on visiting her bank once a week to see one trusted teller to be assured that all her money was still there; or demanding that my sister (her primary caregiver) not be allowed inside the facility at all; or calling my sister and me several times a day, crying due to some indescribable insult or catastrophe...

What does "normal" depression look like? Are you depressed when your sick mother hits the caregivers when they are delivering and administering her meds? Or when she disappears after leaving a movie theater with her daughters, only to be found an hour later behind the counter of a fast-food restaurant, begging the employees to protect her from "those girls"? Or when she climbs into the Fed-Ex truck while the driver is making a delivery to the facility, and when he returns and asks "Where are we going?" she replies "Home." Or when the on-duty nurse calls you late at night to say that your mom won't return to her room for her bedtime meds and is threatening the staff from the entrance balcony? And when you arrive there to help, she points at you and tells you not to bring "those people outside" with you (you are alone!) Or when you are so rattled after many such episodes that you need to drink several glasses of wine (to take the edge off) before you can sleep at night?  You feel better in the morning, and every day brings new hope, right? (Not with AD).

My Mom passed away at the age of 84 after 2 1/2 years in the assisted living facility, and about 6 years after we started noticing symptoms of AD/dementia. Although she had been tested and diagnosed with MCI (Mild Cognitive Impairment) and showed evidence of several TIAs in the early to mid 1990's when she was approximately 65, no treatment was suggested or prescribed. The cause of her death was listed as "Pneumonia and Late-Stage Alzheimer's Disease."  

She was a bright, hard-working woman who had helped her immigrant father take care of her three brothers after her mother left a husband and 6 children. She raised my sister and myself as a single parent, sent us to parochial schools and university while supporting us as a bookkeeper and later in her own real estate business. She was very active in her community and her church, enjoyed her grandchildren, and a was a longtime Tai Chi practitioner, and later instructor. She did not drink alcohol and tried to stay healthy via weight control and good nutrition. She survived poverty, colon cancer, and much more. She tried to be a good person, businessperson, relative, and mother, and had a human and spiritual identity. But this disease ravaged her brain, and she lost herself. There was nothing she could do; and now there is really nothing I can do, at least not right now.

"The mind replays what the heart can't delete."  This is the reason for the tears, Doctors, and I reluctantly accept your diagnosis.

Tags: Sons and Daughters