The Strain of Caregiving

by Ilyce Randell

mother and son, who is in a wheelchairI’ve read a lot about the physical and mental health issues of full time caregivers. We suffer from many physical problems related to taking care of our children. We suffer from many things that no one can see. We oftentimes don’t share all these details with even our close friends or family. Our own problems get put on a back burner out of necessity because our first priority is to care for our children. This is not ideal, but sometimes we simply have no choice.

If we’re lucky enough to have full grown children, this can compound the physical difficulty of taking care of a disabled adult who is 100% dependent on us for absolutely every need, 24 hours a day, 7 days a week for his or her entire life. The physical aspects of being a full time caregiver depend on the person who you’re caring for and how much physical assistance he or she requires. In my son’s case, he is 100% dependent on me for everything, because he has no functional mobility of his own. He cannot do even the most basic function like holding his own head up.

There is a considerable amount of heavy lifting, pushing, and carrying around of him and a lot of equipment pretty much all day, every day. His physical therapists won’t lift him out of his wheelchair and put him on the table because it’s too much wear and tear on their bodies, so for more than 20 years this is something I’ve had to do. Even with staying extremely physically fit, I’ve battled back, shoulder, neck, and other chronic pain and injuries from my own body being under the constant physical stress of taking care of my son. These are not issues that I typically share with people because in relation to my son’s challenges they are relatively minor.

Insurance companies have an interesting way of dealing with this. They simply refuse to pay for anything that is deemed a “convenience item for the caregiver.” This often results in additional out-of-pocket expenses for adjustable wheelchair handles and things of that nature.

My son is 21 years old and I’d never trade having him alive for anything. But with that said, there are consequences to my own health, physical and mental. This is the side of my health that others don’t see. The full time caregiver is often on call for the entire life of their child. I’m never more than 20 minutes away from my son’s school and get called to pick him up if he’s sick or if anyone in the building is sick.

Living in a constant state of “readiness” is exhausting. I’m ready for anything all the time. There are no breaks from this type of hyper-vigilant parenting. I’m not complaining, just explaining.

Sometimes when I see another parent pushing his or her adult child in a wheelchair, we exchange a smile, as no words are necessary. They get it. We’re exhausted, mentally beat down, physically compromised, and tired of fighting for everything. We share many things. We share a quick glance that says it all. But we also share a smile that speaks volumes that we could never articulate to someone who hasn’t walked years in our shoes.

We have made it. We landed in Holland and adjusted to the life. Our children are grown, even though we were probably not expecting them to still be here as adults. All the physical pain and mental anguish can’t take that away. One look, one smile while passing in a hallway at therapy says it all. Above it all, we are survivors, battle scars and all.

Author: Ilyce Randell • Date: 3/14/2019

About the Author

Ilyce Randell is the mother of two children, one typically developing 16-year-old boy named Alex, and one 21-year-old boy named Max who was born with Canavan disease. She has been working to help families affected by Canavan disease for over 19 years by advocating for patient rights, raising money for medical research, and increasing awareness about Canavan disease. Ilyce has recently launched the world’s first international Patient Insight Network (PIN) for Canavan disease through a partnership between AltaVoice, (formerly PatientCrossroads) and Canavan Research Illinois. This tool is critical for advancing research and networking patients worldwide. Ilyce is also the President, Director of Patient Advocacy, and Cofounder of Canavan Research Illinois and Canavan Disease Research. You can read her blog War Stories from Holland

Facebook Comments