Celebrating Love: Dementia Caregivers Speak Up

Caregiver, patient expert

Valentine’s Day, anniversaries, and birthdays have traditionally been celebrated with balloons, gifts, cards, parties, and food. Sadly, when dementia enters into the picture, such general mayhem may overwhelm a person already confused by his or her surroundings. Even attempting to celebrate love can become a challenge. The choice about whether or not to mark special days is often fraught with pain for the caregiver.

Since I’m a dementia caregiver with my own history, I quite naturally wanted to understand the thoughts of other dementia caregivers on this issue, so I asked several of them for input. As one would expect, responses to my question varied, though not one of those who responded mentioned Valentine’s Day itself as being a trigger for showing love. Here is a sampling of caregiver responses:

Carlen Maddux, author of  A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s,** tells about what he calls a “little Valentine-like moment:”**

“Look for the little things,” a friend told me. “And be thankful.”

“How can I be thankful when all I see is my wife slipping away?” I asked more times than I cared to admit. Martha was diagnosed with Alzheimer’s in 1997, at age 50.

Sometime afterwards, our friend Rev. Lacy Harwell invited Martha to lunch. “I wonder how that will go,” I asked myself. This is what Lacy shared:

“After lunch, we went to my former church. We talked with several friends and then stepped into the sanctuary. We stood in the back in silence. I sighed; I was distressed by problems that had arisen since my retirement. Martha looked up into my eyes and slipped her hand into mine and said, ‘It’s hard, isn’t it?’”

I was stunned. I couldn’t remember when Martha last showed such empathy.

All I can say is, “Thank you, my God. Thank you for the light that breaks through the darkness.”

By Carlen Maddux www.carlenmaddux.com


Author and caregiver Karen Malena wrote this heartwarming story** about how her mother continues to celebrate her late husband's love:**

There is a basket my mother keeps near her kitchen table, spilling over with love letters and cards that Dad sent her through the years. We lost my father only four months ago, and these writings have become a beautiful link to his love for Mom.

Every so often when I’m visiting, Mom pulls a crumpled page out and asks in a shy, giggling, school girl kind of way, “Did you ever see some of the notes your father wrote me?”

In her dementia, Mom doesn’t realize that I’ve heard the letters read many times now. But to her, it’s the first time. It’s a way to reignite the passion she and Dad shared, and makes her see herself as my father always saw her: as the young beauty he once courted.

Though the ravages of aging are upon her, the thinning, gray hair, bent body, and same sweatshirt stained with jelly from the previous day, inside is the young girl. The one my father loved.

By Karen Malena, http://karenmalena.blogspot.com/

Sheri Zschocher, author of Living in the Shadow Of Alzheimer’s… Goin’ Through the Motions, tells me that** she’d rather skip Valentine’s Day. Below she tells us why:**

Sheri wonders what Bob would say if his voice was all his own

Would he say, "Sheri when you leave the room I feel all alone"

Would he say, “Thank you for taking care of the family”

Would he say, "Your eyes look tired,” and wipe the tears that he sees

Would he know that open arms are an invitation to hold Sheri tight

Would he know she needs him in the darkest part of night

Would he say he loves her like the day that they were wed

Would one look be enough to feel the love, even with words unsaid

Sheri wonders what would Bob say if his voice was all his own

But Bob's voice is a whisper... and Sheri feels... alone.

By Sheri Zschocher, Living in the Shadow Of Alzheimer Blog


I’ve written often about my own attempts to make anniversaries and Valentine’s Day special for my parents,** continuing their cherished traditions the best that I could after surgery sent my dad into instant dementia. Below is an abbreviated version of our story from Valentine’s Day, Anniversaries Can Be Painful for Caregivers on HealthCentral.**

Dad always got Mom roses for Valentine’s Day. Yellow roses. They were her favorite.

After Dad's brain surgery resulted in dementia and he needed nursing care, I took over ordering the flowers for Mom… I'd get cards for my parents to give each other. I would sign Dad's card for Mom. I'd order roses for Mom from Dad. I'd bring their champagne glasses from their 25th Anniversary up to the nursing home, along with tiny bottles of champagne-like wine… I'd remind Mom that it was anniversary day and fetch her from her room. She push her walker as we'd wheel down toward Dad's room. Dad would generally be sleeping in his recliner. Mom would sit in the chair we kept especially for her, next to Dad's chair.

I'd then try to wake Dad, prop him up and cheerfully announce we were celebrating their anniversary. I'd pour wine, then give Dad the card for Mom by guiding his hand toward her so she could receive it. Then I'd open the card from Mom and try to excite him so there would be some response. Some years, he could drink a little champagne, but on other occasions, he'd just stare or sometimes smile, but he didn't know what it was all about. Mom and I would stay awhile and then I would take Mom back to her room. I'd go home and cry.

My hope for all dementia caregivers is that you are able to accept what you can and cannot do without judging yourself. I pray that others don’t judge you, either. Your caregiving is the celebration of love that matters. Blessings.

Share in more caregivers’ stories:

Veteran Caregiver for Multiple Elders Tells It Like It Is

You Are Not Alone: Caregivers Share Their Experiences and Insights

Family Caregivers are the Heart of Alzheimer's Care

Carol Bradley Bursack is a veteran family caregiver having spent over two decades caring for a total of seven elders. She is a longtime newspaper columnist and the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” as well as a contributor to several additional books on caregiving and dementia. Her websites can be accessed at www.mindingourelders.com. Follow Carol on Twitter @mindingourelder_ and on Facebook _Minding Our Elders.