Shay Jacobson, RN, MA, NMG, LNCC, CNLCP
Nancy calls Lifecare Innovations about once each year.
She struggles to care for herself and her adult disabled son. John is 6’2 and weighs 220 pounds. Nancy is about 5’2” and in her 70s. The physical task of tending to his needs is very nearly beyond her capabilities.
Nancy acknowledges that she needs help, she reaches out and asks for it, and then immediately refuses it.
Nancy is in a bind.
A Team of Two
Nancy and John have fended for themselves for almost 20 years. John’s father died quite some time ago, leaving behind an able and independent wife who found a way to forge ahead with the business of life. John has a rare congenital muscular condition, in addition to developmental disabilities that affect his mood, motivation, resilience and judgment. He is, as Nancy puts it, “easily led”.
The business of getting through the day, of managing John’s ever-changing needs, conditions and surgeries, has become Nancy’s life. The two are isolated. John cannot readily navigate the 21 stairs between himself and the street, and Nancy has little time to socialize or consider her own needs.
Nancy, an only child, has raised an only child. They are deeply enmeshed and accustomed to a certain solitary way.
Nancy is perhaps as independent as John is dependent. Somehow, both are served by this difficult situation.
The Importance of Purpose
In the 40 or so years of John’s life, his universe has been relatively small. His needs have consistently been met by his mother. This is the only way he knows; a need arises, and mother takes care of it.
It’s important to recognize that Nancy’s needs are met in this situation, too. Her life has been largely dedicated to John’s care. This is her purpose, the reason she gets up in the morning. Relinquishing even a tiny portion of this all-consuming job may cause Nancy to feel guilty, inadequate, and incomplete.
It may strike Nancy as unimaginable that anyone else could do for her son what she does and yet, on some level, she knows that someday, someone will.
Support and Patience
When Nancy reaches out for help each year or so, we respond. We talk with her about John’s latest predicament and what she feels he needs. She asks us what we can do, for her, for him, and then wonders aloud how things might go when she is no longer there for him. And then she asserts that now is not the time and goes back to her solitary way.
So we wait. We wait with Nancy and for Nancy. She is not ready to let go of this important job, even a little bit, and it is not our role to pressure or cajole. She has the decisional capacity to continue as John’s caregiver. No one is being abused or neglected or hurt. Someone is, however, trying to manage a pivotal life transition and it is taking her some time.
We have supplied Nancy with laminated wallet cards to carry with her and post in her home. When the day comes for Nancy to receive care, possibly in a hospital or elsewhere, we will be notified. Only then will she accept the help, and only then will John learn what it is to receive care from someone other than his mother.
We have picked up the pieces in many such scenarios, when the doting parent can no longer dote on the adult disabled child. The child/mother care arrangement works beautifully until the day it doesn’t, and this is perhaps when we as professionals can achieve our highest and greatest use.
Nancy has given us a four-page handwritten letter about her son. She is pointing the way, and this will be our roadmap when someday arrives.
© Lifecare Innovations