Saturday, October 18, 2008

Dementia and Devotion

In the home they have owned for more than 40 years, they live their lives as they always have. The same trees are visible through the kitchen window. The grass is still green. The grandfather clock given to them by her parents for their tenth wedding anniversary still chimes in the foyer. The curtains and the sofas haven't changed in years, and the silver flatware in the breakfront drawer still evokes memories of Thanksgiving dinners, birthdays, and family gatherings galore. From the kitchen linoleum to the wood paneling in the family room, little has changed in this cozy suburban home.

While the outward appearances are relatively static, it is her dementia that has permanently changed the calculus of their relationship. It began with mild, transitory forgetfulness, only to slowly escalate into full-blown dementia as the months went by without a formal diagnosis. She would walk into a room and stand there, utterly stumped as to why she was there. He would leave her in the frozen food aisle to look for light bulbs in another part of the grocery store, and when he would return to find her, she would still be there, staring blankly at the ice cream display, apparently lost in thought but actually lost in the absence of cohesive thought.

At a certain point, it was apparent that she could not be alone. She could no longer bathe herself, toilet herself, dress herself, or make even the most rudimentary decisions. Luckily, if a plate of food is placed before her, she will still reflexively use her fork or spoon to scoop up food and bring it to her mouth. Sometimes, the fork spears nothing but air and she must be redirected to bring it down to the plate again. At other times, the food will fall back to the plate or into her lap, but she won't notice. She will bring an empty spoon to her mouth with the same motion and intention as a spoon laden with mashed potatoes. She doesn't recognize the difference, and he monitors her intake with the eyes of a loving, doting husband of 55 years.

He has refused all assistance other than skilled nursing and physical therapy. A home health aide? Never. Meals on wheels? Not a chance. Day care? Unthinkable. She is his project, his object of devotion, the love of his life and the mother of their children. His days revolve around her, and he revolves around her like a moon around a planet with a strong gravitational pull.

Her eyes seem aware, yet it is not clear what they register. She responds to some questions but not others, and it is uncertain how much of her response is reflexive rather than real. Her shuffling gait, her blank gaze, her apparent lack of interest in anything happening around her---these are hallmarks of her state of mind, and he must long for the days of lively conversation and verbal interplay. How lonely he must be, prematurely bereft of his friend, his lover, his bride.

"You see how her hair is set?" he asks. "Friday is Hair Day," he explains. "I wash it, set it, dry it, and then brush it out and spray it. Just like she used to do. We make her beautiful for the weekend when the kids and grandkids come to visit." He smiles proudly.

Sitting in the chair, her hands passively resting in her lap, she stares at me, smiles, and almost looks through me. I hold her hand, tell her I would like to take her blood pressure, and she raises her arm and places it on the table. I thank her for her assistance. She smiles again.

Placing the tools of my trade in my bag after making some final notes, I shake her hand and get up to leave. Her husband walks me to the door and we shake hands warmly.

"You're the model husband, and I can see that she's receiving the best possible care here at home," I say as we shake hands.

"Thank you," he replies. "I try my best. She's all I have, and I want her here with me."

"Let us know if you need more help," I say as I enter the breezeway between the kitchen and the garage. "You're doing a wonderful job and she looks so well-cared for. Take care, and her primary nurse will be back on Tuesday to check that elbow."

"Bye bye, and thanks for coming over." He waves and closes the door.

What other slow and silent human dramas are occurring in the other well-kept homes on this quiet street? How many other spouses are devoting their every minute to the care of a beloved who is no longer quite as healthy and vibrant as they used to be?

Devotion and love are the engines that drive relationships and lead us to selflessly focus our energies on the human objects of that love. Here was a stellar example of how that type of deep, lifelong connection manifests in real life. Despite the sadness and loss that underlie such a situation, the human manifestation of that devotion and love is truly an inspiring sight to behold and an honor to witness.


Carin Diaz said...

Wow, Keith, I don't know. I'm guessing not too many. Often I admit patient's with dementia living at home with spouse or a family member with the signs of receiving only substandard care--sores, diaper rash . . . He must be a super husband, super caregiver. God bless him.

You made this ordinary home visit, a very interesting, and heart-touching one. excellent post. Thanks for the good read.

Anonymous said...

What an extraordinary story -- and written with such compassion and insight. Thank you for sharing this experience of a remarkable and transcendent love.

Geek2Nurse said...

Absolutely beautiful, thank you.

I was talking to an elderly man once whose wife's dementia had deteriorated past the point where he could care for her himself. He faithfully visited her every day, even though she no longer remembered him. "You see," he explained to me, "I still remember who she is."

Keith "Nurse Keith" Carlson, RN, BSN, NC-BC said...

What kind and thoughtful comments. Thanks to all.