Dear Prudence,
Shortly after we were married eight years ago, my husband had a car accident and became permanently disabled. This was a shock: Our lives and plans halted. I became the primary breadwinner, primary doer-of-things, primary childcare provider, etc. He also suffered mild brain injury and subsequent mental health struggles. Beyond that, each treatment for each illness comes with side effects, more illnesses, and more depression. Essentially, dealing with a disability can be a giant domino effect—financially, emotionally, and physically. I’d list out the struggles we’ve endured (near-death experiences, bankruptcy, hospitalizations, etc.), but you don’t have all day.
Regardless, we’ve done a good job. Our greatest strength is a choice to involve good professionals along the way including therapists, psychiatrists, marriage therapists, child therapists, and parenting consultants. Our son is a fabulous, compassionate kid with age-appropriate understanding. We have a good marriage and a good village. I count us blessed.
My struggle is this: my well-meaning friends. My husband and I have a very different bond than most people our age. Our marriage therapist describes caregiving as “aging” your bond, because you pack years of joint experiences in a short period of time. The romance and honeymoon period dies immediately, and you are forced into a period that most people don’t reach until their seventies. I am part of caregiver support groups where everyone has thirty years on me. I struggle with immense compassion fatigue, decision-making fatigue, and am burdened with 100 percent of household duties when my husband is having a bad episode.
People don’t understand our relationship. They can be blameful towards him, unfairly.
They don’t see the same romantic bond they’re used to in others, and girlfriends comment about “falling in love again” (I don’t need to). They don’t see reliance, trust, and comfort as a valid form of love. They don’t see my stressors as a valid choice to be in a difficult situation. They don’t see how he does contribute and when he can’t. Our therapists and professionals are very supportive, but the “lay people” in our lives can be hurtful. I explain and explain, but you just don’t understand caregiver burnout and a 70-year-old marriage until you’re in one. The worst is when they compare their marriage or situation to mine. Look, I know it isn’t PC to say this, but there aren’t many struggles (for example, quarantining together during COVID or a brief period of unemployment, both of which we have also done), that compare to having a spouse with a permanent, life-shortening and life-threatening disability. Sorry not sorry, but I am not buying into that.
Do you have any language for this? Thanks.
— Loving Caregiver