Caregiving as a Parent of Special Needs Children
My workplace is my home, and my job is full-time mom and caregiver. By caregiver, I mean that one of my children has complex developmental, medical and behavioral needs, and at the age of 12, requires more daily care than an average infant. He will require this intensity of care for the foreseeable future, and most likely for life.
Next week I have a surgery scheduled. It’s necessary for my health, but anticipating downtime for recovery is terrifying. I am married, and my husband is supportive and capable, but I feel guilty leaving him to fill my full-time caregiving role when he also has a full-time job.
This week, in preparation I am focused on streamlining the details of daily life to pass the caregiving baton. My parents will stay at the house during the days that I require someone to help with my own care. I have notes, phone numbers, and reminders set up. I am putting together two weeks of med boxes, just in case I still have brain fog when the first week is done and don’t have the focus to ensure the accuracy necessary. I have packed in extra appointments in advance, and many more after I recover.
This taps into the fear of many caregiving parents; what if something happens to me without time to prepare?
My mind is the hard drive that stores all the data required to manage, not only our complex youngest child but the other two as well. Without me present and mentally capable, much of the data is lost. I wish I could convey the complexity of it, but the only way to understand is to live it.
We created “The Great Big Book of Everything”, which is a document that includes all the doctors, teachers and support people and their phone numbers as well as medications, and medical procedures. My husband, adult daughter and mother all have copies. It’s a start, but there is no way to accurately document the minutiae of daily life. My husband could pull it off, though the strain would be terrible. I cannot even fathom how someone else would take over if my husband and I both became incapacitated. We pinch our pennies to keep up hefty life insurance policies. The promise of financial security takes a bit of the edge off the niggling fear in the back of our minds.
The reality is that full-time caregivers are indispensable. Even just passing the baton for a day or two means doubling up work before and after. This makes even a brief break from the daily caregiving life a real trick to pull off. Caregivers must carefully weigh the cost and benefit of any time away from their loved one. Time away must have a clear and robust benefit to be worth the planning and preparation required and the hind work that happens upon return. I suspect it gets easier with practice and experience, but many of us don’t get much opportunity.
This experience is teaching me that I need to find ways to let go more, to cede control, and share the responsibility.
The importance and value of a caregiver’s efforts cannot be overstated, we fill the shoes of doctor, nurse, pharmacist, therapist, teacher, dietitian and more every day. But this experience is teaching me that I need to find ways to let go more, to cede control, and share the responsibility. My child cannot afford for me to be so indispensable, nobody’s can. If you are close to a full-time caregiver, maybe it’s time to see where you fit into one of the many roles they fill in a day. If one or two people step in and learn about the cared-for person, the caregiver’s responsibility shrinks a smidge. And if a village comes alongside the family, it could be life-changing.
Alethea Mshar is a Special Needs Mom and Blogger.
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