Caregiver Grief is Overwhelming

As a living, feeling human being and caregiver to an Alzheimer’s patient, there are days that I wonder how I will ever feel normally again. I’m not a psychologist or in any way a student of mental health. I just know that the duration of suffering that I have endured has changed me profoundly. I’ve listened intently to others at caregiver support group meetings and it seems I’m not alone. Losing a loved one to Alzheimer’s disease is a long and painful process. This is what they mean by the long good-bye. I’m suffering from caregiver grief.

In casual conversation I am always keenly aware of the duration of this experience. As the years go by I make note of how long it has been since I diagnosed my mother’s Alzheimer’s disease and how long it has been since I became her legal guardian. I talk about the years as a point of reference but each one seems like a badge that I’ve earned. These badges are survival badges. I’ve endured the pain of this caregiver grief for nearly a sixth of my lifetime. That seems significant and substantial to me.

These days, when I put my arm around my mother and hold her close, I sing my own words to that old Sonny and Cher tune, “I’ve got you, babe!” I sing to her that I’ve got you and you’ve got me and then I laugh and tell her that I’m stuck to her like Velcro. She usually snuggles in closer and laughs. This is truth. I will love her and take care of her for however long she needs me. For six months, 2 years or 10 more years, I’ll be right here watching over her.

This journey together has been most difficult on me, the caregiver. I’ve felt varying degrees of grief since that day when I figured it out. I cried that night, all night, as I listened to mom roam the house aimlessly. I cried because I knew how hard the road was going to be for both me and my father. And I cried because I was already feeling a deep sense of loss. She was already slipping away.

There had been subtle changes to our mother-daughter relationship that I was feeling but I didn’t understand. Mom had become what I labeled as distant, uncaring and disinterested in me or my life. She had stopped listening to my stories and stopped asking about my life. It wasn’t like her even if she had something else going on. These pangs of hurt feelings helped me to figure out what was happening.

As I keep chalking up all these survival badges of being a caregiver, I’ve weathered the hard analysis and practical decision making. I’m well equipped to manage anything as long as I’m armed with the right knowledge.

But this long good-bye has been one of variable and sustained grief. I suffer every time mom loses a skill or declines to a new normal. Caregiver grief has altered the way I connect with my own emotions. I’ve never been void of emotion but some days I just can’t feel anything. I’m numb. Other days I’m so overwhelmed all I can do is sob. I’ve burst into tears in restaurants and hidden tears in public behind my dark sunglasses. I can’t turn those off. I’ve even had to cancel business meetings because I can’t stop crying. I call them my crying days. I’ve survived this emotional ordeal so far but at what cost? I question my endurance and how I will heal and move forward.