This month, another adult child was drafted into the world of caregiving. Her name is Janet, and she is a 50-something schoolteacher with a husband and two adult children.
One would think that the most logical subject of her caregiving would be her frail 86-year-old mother who lives 2,000 miles away. And in some ways, you would be right. But that is only half the story.
Janet grew up one of two children. Her older brother, David, was a special needs child. Back in his day they may not have put a name to it, but he does not make eye contact, has learning impairments and only at age 50 was he stable enough to get his driver’s license.
He has been working at minimum wage jobs and just recently took over some caregiving duties, like driving and food shopping, for his mother, whom he has lived with his entire life.
Janet was making a trip “home” to be David’s transportation and care for him for his planned cataract surgery. Upon arriving at the house and talking to her mother, Janet could tell things had worsened. Not only was her mother much frailer, but she seemed to be repeating things over and over, and her mother’s expectations of what she could do far outweighed her abilities.
Janet’s brief visit to the local recreation center led to her mother’s friends surrounding Janet and expressing their concerns about her mother’s physical and cognitive abilities.
“OK,” Janet thought, “maybe it is time for some in-home care support.” As Janet was working on that, she turned her attention to her brother’s impending cataract surgery.
After the surgery was completed, Janet drove David home and filled his prescriptions. David went upstairs to his room to get some rest. Later that evening, he was making his way downstairs when he tripped, toppling down the stairs hard enough to make a large hole in the wall with his head and neck.
An ambulance was called, and they took David to a trauma center, where Janet learned he had spinal cord, back and neck injuries. The doctors performed emergency surgery and then another surgery a few days later.
As I write this, David does not have use of his body below his chest. Doctors are hopeful David will regain some movement, but for now he is on a ventilator and artificial nutrition and will have to relearn to eat and use his voice box because of trauma to his esophagus.
The hospital recently moved David out of ICU and plans to discharge him to a rehabilitation facility within a matter of days.
Janet plans to take both her mother and David back to her home area, which is 2,000 miles away from where David and his mother were living. David’s transportation must be by medical air transport from the hospital to the rehabilitation facility due to the severity of his condition.
In a matter of moments, Janet has shifted from daughter and sister roles to being the family caregiver for her mother and brother. The extent of her duties is, and will be, considerable. As with most cases, family caregivers are not trained in patient care, medical insurance coverage and policies, addressing social and emotional needs, transportation, financial planning, advocacy and end-of-life issues.
For the most part, caregivers learn by trial and error.
There is a tremendous amount of adjustment that needs to happen mentally as one becomes a caregiver. Facing the “new normal” and making adjustments takes time and the support of others.
If you know of a family caregiver who could use some help, please have them call Senior Concerns at (805) 497-0189. Even if they’re not local, Senior Concerns can direct them to resources in their area.
In a world where we hear a lot more about bad news than good, here is something to make your heart happy. An organization has donated the medical flight for David to be moved to a rehab facility close to his sister.