How Do You Sum Up a Life?

How do you sum up a life? I’ve been asking this question a lot lately. A tombstone sums up a life with a dash between two dates and possibly an epitaph like, “Loving husband, father, son forever,” “Friends always,” “My one true love,” or “Mommy.” An obituary in a newspaper or online dedicates two paragraphs or so to summarize a life. There are even classes to teach you how to write a tribute succinctly using crisp word choice and industrious punctuation.

My mom died recently, or maybe I should say my mom passed recently, or I lost my mom recently; it seems more politically correct to use those vague words than to say the word died. People don’t seem to like that word; it’s too direct. I cringe, though, at the thought of losing mom, like losing the keys between the car and the key hook on the wall, or like losing a precious gem from my ring that silently shook loose from its seat while I walked along a sandy beach, sadly never to appear again. I wince, imagining mom’s passing from here to there like a speeding train bolting towards an invisible complicated destination. Died feels more accurate and definitive, more real somehow. September 26th. That’s the day mom died. She made it to 90! Her birthday was August 29th. I’m left to fill in the dash and make sense of it all as an adult child, her only daughter, and her caregiver to her final breath.

Mom was not perfect. She was a complicated figure in my life, but she was my mom. My only mom. She taught me to tie my shoes and to say, “I’m sorry.” She showed by example how to ask questions and make a friend. Mom gave some good advice and some bad. But, in the end, forgiveness was her request. She loved me; I know that for sure.

Today my feelings toward her are tender, and childhood memories replay with warmth and affection. During the last years of her life, mom lived with Doug and me close to family. She died with her children next to her, in our home, in the middle of the night.

Without mom here, this holiday season is abnormally empty and oddly freeing. Old age burdened mom. She used to say, “getting old isn’t for sissies,” and as her care partner, I concur. Daily I felt and managed the obligation and responsibility of her elderly realities. Since her death, the oddly freeing feelings I’ve encountered stir up waves of guilt, relief, sadness, and contentment—a mixed bag of grief.

Doug’s dementia has kept him from clearly comprehending mom’s absence. He lives each day like the day before, as if nothing has changed. I guess, for him, little has changed. Mom is not here, that has changed, but the household routine is still very much the same. Kathy (his caregiver) still comes and offers companionship and consistent care. I still talk to him about anything on my mind and ensure he has the food he likes and friendly snuggles now and then. Romeo (our dog) still pops up on his lap and barks at the neighbors. 

Apathy visits Doug often as he wanders the house and speaks very little. It is a genuine part of the dementia experience – flattening his facial expressions and obscuring his daily existence with an ambiguity of monotone. I used to think apathy meant not caring, the opposite of empathy, which it is to a degree. But in Doug’s case, it blooms as a sort of lethargy – a lack of interest, an indifference lacking expression and initiative. It is not sadness or hopelessness like depression; it is almost a bareness like his emotions and creativity are drying up.

One thing Doug still animates for, though, is Christmas music. He always has. It could play year around, and he would be content (I would go crazy by January 2nd, but he would love it). When these festive songs play, I watch Doug remember. He whistles occasionally and even sings the lyrics as if nothing hinders the language centers of his brain. His eyes light up, and apathy briefly slips away (which also happens when he keeps company with our young grandchildren). It is a mysterious phenomenon. Watching apathy dissipate and Doug’s eyes sparkle with clarity, even for a moment, feels like magic or God.

Grief has a broad reach in my life right now – the predictable waves of grief surrounding the death of my elderly mom drop in and out of my daily experiences. I appreciate how it goes; I’ve felt this turbulence before – with each passing day, memories shake loose, and the tug on my heart eases.

The anticipatory grief of dementia I am simultaneously experiencing, however, obscures daily life. It is a different grief altogether – a terminal illness, piece-by-piece grief. It hovers and waves across my emotions like an unkind slow goodbye experience that deserves postponement, swelling as the days pass, not easing. In many ways, anticipatory grief feels disrespectful, even sacrilegious. It is grieving the dying pieces of a person and the reminiscences of someone you love who still lives. 

Since Doug’s diagnosis, the holiday season has been a tricky time of year. Doug and I used to love engaging the bigness of the festivities with our children, friends, and family. Looking back, it seemed to all happen with unforced energy and a peppy step as we prepared meals, had people over, baked cookies, and decked the halls. But this year, in particular, holidaying feels like a herculean effort; I catch my drooping shoulders and downcast gaze leading my weary frame from here to there.

I know why that is; you don’t need to send me responses explaining the grief cycle at holiday time. I get it. I also know my very best thinking brings me to where I am at any moment and that if I choose, I can set myself aside in quiet reflection and find gratitude in the now.

It is empowering to live intentionally in the step-by-step of time, shoring up my thinking with thanksgiving and silver linings. When I concentrate on blessings, gratefulness, and love, I feel less downtrodden and realize afresh that I have SO MUCH to be thankful for.

So today, I’ve decided to count my many blessings and say a thanksgiving prayer. Doing this will interrupt my stinking thinking, nourish me, stand me taller, and help me, one day at a time, walk the road of grief I am on during this beautiful holiday season.

Karen