In her shoes

Essay by Diane Solomon, M.D.

It’s likely that every person reading this has been affected by Alzheimer’s disease, either through family or friends. I’m no exception—my grandmother had Alzheimer’s disease, and this is an excerpt from a poem I wrote about her shortly before she died almost 20 years ago:

Battered and worn,
Grandma’s shoes sit empty
on the bedside chair.
She is sleeping peacefully, breathing deeply.
Yet, she grips the bedside rail,
Holding onto life
Much as she used to hold onto the dashboard
When Grandpa drove too fast.
Her 92-year-old bones are barely covered with parchment-thin skin.
Her eyes slowly open
and there is no recognition.
She does not know me,
but she knows my love
And responds lovingly,
patting my hand
Just as she did
when I was a child.
“I love you, too, honey,” Grandma says.

I sometimes share this with the medical students I teach to emphasize the caring and compassion that are needed for people affected by dementia, whether they can remember who you are from one visit to the next or not. I’ve always had a heart for the elderly—even before I got my own AARP card!

As a geriatric neurologist, part of my job is evaluating people with memory disorders to determine the cause. About 80 percent of the time, the cause of dementia is Alzheimer’s disease. Receiving such a diagnosis is devastating, and before giving that news, I pray that God might somehow use me to be a blessing to the patient and their family. Yet, in the paradoxical way that God sometimes works, I am the one who is most blessed and inspired by the examples of love and caring I’ve witnessed.

Let me tell you some of their stories.

I think of the husband who gently and lovingly answers his wife’s question. It’s the same question that he answered five minutes ago … and five minutes before that … and five minutes before that. It really does require superhuman patience.

I think of the wonderful woman who took her husband on a long, special trip to an elite event because she could not bear for him to be disappointed, even though several physicians (including me) advised against it, thinking it would be too difficult. With careful planning and determination, she pulled it off beautifully.

A woman in clinic yesterday told me she has participated in the 5K for the Alzheimer’s Association for years. She admitted that in the back of her mind, she was thinking that she might get the disease someday and should support the organization. Tears welled up in her eyes as she said she never imagined it would be her husband who now has the disease.

And then there is the man who spends every day with his wife, reading to her, encouraging her and walking with her, although she doesn’t know who he is. But he tells me, “I know who she is.”

I also think of my patients who continue to find purpose despite coping with significant limitations. Cognitively impaired people compensate for their deficits better if they have a regular, calm routine. It takes courage to allow a degree of independence within that supervised structure, but a conscious effort to do so conveys respect and often improves confidence. Whether it is helping with the laundry, sweeping the porch or setting the table, each of these tasks gives the person a way to contribute and to be a more meaningful part of the family or community.

The most inspiring example I know regarding a patient with Alzheimer’s disease maintaining a strong sense of purpose was demonstrated by San Antonio philanthropist Glenn Biggs. Even as his disease advanced, he remained committed to raising funds to help patients with Alzheimer’s and to support related research. He was a remarkable man.

It is such an honor to be a small part of these lives, but it’s a very difficult journey that these patients and their families are on. They need to know that everything that can be done medically will be done and to have the assurance that we will continue to walk alongside them.

Caregiver support is critical. No one should have to face the care challenges without guidance. For example, it’s hard to know when driving is no longer safe and even harder sometimes to convince the person to stop when it’s not. What do you do when someone hits five cars in a parking lot, but insists he is safe to drive?

Dementia is, of course, a major disruption for relationships, but it can also bring people closer together. Constant adjustments for a new balance in the relationship are required. What worked for the first 50 years of marriage often no longer applies. It is helpful to acknowledge these difficult transitions to the caregiver and to encourage participation in support groups.

A multidisciplinary team is needed to address these and the many other daily challenges that arise. When the Biggs Institute for Alzheimer and Neurodegenerative Diseases opens, a team of health care professionals from many disciplines will partner with community resources to address the medical and social needs of these patients. In addition, clinical trials will be offered and ongoing basic research increased.

My hope is that I’ve given you a sense of the heroes I serve—the courage and perseverance of my patients and their caregivers—and conveyed the promise of the Biggs Institute to provide comprehensive, compassionate medical care and research. We can do no less, because this disease affects the people we love.

Diane Solomon, M.D., is a professor of neurology in the School of Medicine. She practices at UT Medicine’s Memory Disorders Clinic at the Medical Arts & Research Center. She is also the director of medical student education for the Department of Neurology.

The Biggs Institute for Alzheimer and Neurodegenerative Diseases will be the first comprehensive center of its kind in San Antonio and South Texas. Named for the late San Antonio community supporter Glenn Biggs, it will feature expert diagnostics; physician specialists in Alzheimer’s, Parkinson’s and other diseases; support programs for caregivers; and access to clinical trials of new therapies. It is slated to open in 2017.

 

 

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