Caregiving is stealing my life and marriage

With six years of Multiple System Atrophy (MSA) chomping at the bit, my husband’s body has nearly succumbed to this dreadful disease. Our marriage is now in its sights. To an outsider, MSA looks very similar to a more well-known disease ALS. MSA is a rare, degenerative neurological disorder affecting autonomic functions. MSA slowly controls anything you don’t manage on your own, such as breathing, bladder, bowel function, and motor control.

This disease is a thief. Nothing in our lives is immune from its grip. His body, his voice, his mobility, our family, kids, friends, finances, and now our marriage. Somewhere in the past couple of years, we transitioned from husband and wife to nurse and patient. Being a caregiver is now making our relationship a mess. Caregiving has sucked the very life out of my bones and has begun to steal the most important relationship we have — our marriage.

I don’t know when it happened. It would have been easier if it happened overnight, and I could identify this line in the sand. Instead, it has happened gradually over the last couple of years. I don’t love my husband less, and I don’t think of him any less; it is just that our roles in our marriage are different. I miss being able to talk with him. With every ounce of me, I miss having a conversation with him. He is right next to me, but we can’t have a conversation. There are no words that come out of his mouth, just gasps and whispers. He struggles and cranes his neck in a contortion due to the dystonia, and his eyes glare at me almost as if he is in pain. He is not in physical pain, but I know he is in emotional distress — the pain of not speaking or talking at all. I miss being able to tell him about my day and asking him about his day. I miss asking him his opinion on the world, religion, politics, the kids, finances, and even celebrity gossip. It is pointless to ask. The silence created by this disease creates a gap between us we don’t know how to fix.