The Toll of Caretaking

Two weeks ago, our small community experienced a horrific tragedy with the murder-suicide of a mother and her autistic adult son. Although we can never speculate as to the mindset of any another person, I believe we can likely assume that the stress of caregiving may have played a part in this very sad event. At a grief counseling session with the parents shortly after this tragedy, many there spoke of their own excessive anxiety and stress levels. They expressed understanding of how it was possible that a parent could be driven to do something so drastic. 

There are so many stresses in caring for a child with autism. Mixed in with a parent's constant sleep deprivation, frustration, loneliness, and frequent isolation is the worry of who will take care of their child when they die. These parents know that their kids are not easy to live with. Who besides a parent can love a child unconditionally and tolerate all their behaviors and quirkiness?  Parents also recognize with brutal clarity how vulnerable their child is to exploitation and even abuse, especially those who are on the more involved end of the autism spectrum. 

In most situations, it is the mother who is the primary caregiver and often must forego the opportunity to work outside the home or maybe only allow for part-time employment. Women typically have a difficult time admitting or even recognizing that they may be under insurmountable stress in the best of circumstances. Compound that with the additional problems of caregiving and we may have an insight into the kind of 24 hour on-call life these parents experience. But women are not the only ones stressed. A child who requires constant supervision for safety, hygiene and overall health will tax the emotional resources of an entire family.

As the caretaker, the parent does not have much time to reflect on what the future holds. They tend to take on each day one at a time. But certain milestones will force awareness of the passage of time – as children of family friends get their driver’s licenses, go away to college, marry. All are reminders that these are not the cards the family of the person with autism has been dealt. When a parent actually takes a moment to process this information, it can be overwhelming. When will it ever end? Will it ever end?

Some possible lessons learned from this tragedy are that we have all have to help one another, especially keeping in touch with other parents who really know the day to day struggle. Also, as those of us who work with these students, we would want the parents to know how very much we care for all of them – students and their families. Our staff was so significantly devastated by this sad and shocking event, it surprised the family completely.  Would that we had known! It is in our nature to want to help, so take advantage. And should a child be placed in a group home, we would watch very carefully to look for changes in behavior, food, dress, anything that might alert us or the parents that something may be amiss. Yes, it would be different, and it would never be the same or replace home, but that doesn’t mean it is not a reasonable option to allow parents to experience their child in a different way.

We miss the two who died tremendously and think of them with very heavy hearts. My only hope is that others will pay more attention to families who are struggling and even check in on those who seem to be doing fine. Because we all know caretaking for a person with significant disabilities is not at all easy.