Here they would come, always from out of town. Frazzled, but determined. The notebook, usually from the hospital gift shop. But sometimes they were prepared. As a medical social worker, I sat in on these meetings. To help with discharge planning, end of life decisions, support to the family during their pain, confusion, anger. “Did mom ever talk about what she’d want?” Validating their pain, confusion, anger – essential social work skills, yes. Frightened and traumatized daughter, I see how much this hurts, your experience is valid, it makes sense you feel this way. I can be with you in your pain, for I am in it, but not of it.
As a social worker, I look at practical things first: scan the room, make sure there are plenty of pens, the tissue boxes are available, there is water, enough chairs. Valuable ancillary help, the little I can do from my powerless position as social worker. We can’t take the pain away. We can help see you to the other side of it, if you let us. My words of support were from my training, not any personal experience at that time. I’d never lost a parent, a sibling. Lip service then, fifteen years ago. Today, my personal reality.
“How do you spell that?” They always want to know the correct spelling of the doctors’ names. Rarely mine. Everyone knows that the attending physician is the one in charge. Casting eyes down, they press firmly on the fresh sheet of notebook paper, they record the doctors’ names precisely. The one small detail they can control as their loved one – their mom, dad, sibling – suffers, fades, dies rooms away. Facing these critical times, hard decisions must be made. Astute doctors with many years of experience in leading these family meetings know it takes time. As mom or dad lie motionless, eyes closed, dependent on machines to breathe and medicines to keep the heart beating, families mourn, grasp for hope, live the pain in a thousand ways. There is beeping, tubes, gowns, stainless steel, quick clicking of Dansko loafers chipping down the hallway, white coats, scrubs. Sometimes seeing their mom or dad on the machines is enough reality to bring clarity and know intuitively what to do. Those are the most healing. Oftentimes there is conflict amongst family members, “We must do everything! We cannot give up, that’s not what he/she would want!” A manifestation of personal guilt. In reality, the adult daughters, especially the out-of-town variety, hold their guilt and mold it into action with nagging questions, requests for more meetings, long gazes, and deep pain. “I left my mom/dad/sibling alone. I wasn’t there. I should have done something more.” Sometimes that remorse goes sideways and shoots out at others. “Why didn’t (insert hospital/nursing home/other relative here) do more to prevent this?” We listen, validate, make small nudges towards helping them see more than the pain in front of the them.” Delicate work.
Families face death in many ways, united or estranged, they face these last days and hard decisions with common threads amongst them. A leader will always emerge, the spokesperson. In addicted families, this is often the Hero,* rarely the Lost Child, although they do emerge. Often in smaller families, members will cycle through the roles, trying each one on for fit, adapting, coping. Some listen and agree, afraid to confront or do anything to challenge the Leader. When they reach out to the social worker privately, it indicates great difficulty is on the horizon. No, not everyone is in agreement with the plan discussed; someone was too scared to speak up. Families are sometimes destroyed by crisis. Others summon collective strength and unite. We see all variants. In my own family crisis, I see strength and unity, for which I am grateful.
My father’s death two months ago today was sudden. He died on the floor of his bedroom, perhaps in pain, as indicated by what my demented mother recalled: he was loud, screaming, scary to her. She hid in the bathroom until she heard a thump. His thump, as his body gave up and his heart stopped beating. He was released from an emergency room for chest pain and shortness of breath not four hours prior. Whether a work up was completed with due diligence remains to be seen, but will be discovered. Where was I during his last few months? “More should have been done. I should have…they should have…WE should have…” We are all responsible, we all played a part, yet not everyone is willing to talk about and own his part. Hiding behind corporate will not erase the poor judgment that was exercised, you will always know in your heart you could have done more. I know I do.
Adult daughter with the notebook, especially the out-of-town variety, I was describing myself one day. And here I am. Except I have multiple notebooks, one for the deceased parent and one for the parent with dementia, one for the house, one for the bills and expenses, massive details to manage, a guardianship to pursue next month, a house to fix up and sell, and 1500 miles between where I am and where I need to be, all in the era of COVID-19.
*The Hero – The Hero is a family member who attempts to draw attention away from the alcoholic/addict by excelling, performing well and generally being “too good to be true.” The Hero has a hope that somehow his or her behavior will help the alcoholic/addict to stop using. Additionally, the Hero’s performance-based behavior helps to block emotional pain and disappointment. The Enabler – The Enabler is a family member who steps in and protects the alcoholic/addict from the consequences of his or her behavior. The motivation for this may not be just to protect the alcoholic/addict, but to prevent embarrassment, reduce anxiety, avoid conflict or maintain some control over a difficult situation. The Enabler may try to clean up the messes caused by the alcoholic/addict and make excuses for him or her, thus minimizing the consequences of addiction. The Scapegoat – The Scapegoat is a family member who creates other problems and concerns in order to deflect attention away from the real issue. This can be through misbehavior, bad grades or his/her own substance use. Oftentimes, the Scapegoat is very successful at distracting the family and others from the addicted individual. The Lost Child – The Lost Child is a family member who appears to be ignoring the problem completely. There could be a fight, with yelling and screaming, and the Lost Child will be absent or secluded from the situation. They are often perceived as the “good” child because much time is spent alone with books or involved in isolated activities. While the Lost Child will not be successful at drawing attention away from the family problem, he or she is able to avoid stress personally. The Mascot – The Mascot attempts to use humor as a means to escape from the pain of the problems caused by addiction. He or she will often act out by “clowning around,” cracking jokes or making light of serious situations. While the Mascot can certainly help lighten up a desperate situation, the real intent is to ease tension, keep the peace and serve as a distraction. Many comedians come from dysfunctional homes.
Thank you for reading. Please like, share and follow my blog. Together, let’s heal and help others, with focus on the most vulnerable in our community: our elderly, mentally ill, addicted.