Advocates, bystanders, cheerleaders

My friend, whom I wrote about last month, is still in the hospital – going on 100-plus days in the ICU.

There have been some good days, and some bad days. It has been two steps forward, one step back. With each setback it becomes more challenging for our friends and loved ones to stay positive and do what we can to help my friend get out of the hospital!

We’ve become a close-knit group, those of us who come by every day. And as I look around the hospital room, I notice how unique we are, each of us with individual agendas, commitments, needs, capacities, and expectations. We divide into two broad groups: the trained and untrained caregiver (to use a fitness analogy).

The trained caregivers include doctors, nurses, and medical support staff – they’re the pros – caregiving is their job. They “care” on the job and go home and resume their “normal” life, if there is such a thing.

The unexpected caregiver

The untrained caregivers include immediate family members, close friends, not-so-close friends, business associates, and others. Most often it is the significant other (whom I call the unexpected caregiver), whose life changes the most, and the most suddenly. Unexpected caregivers find themselves living at the hospital, not knowing if it’s safe to leave even for a little while.

I realize now that unexpected caregivers are everywhere, not just at the hospital. They include baby boomers looking after parents who have outlived actuary tables; family members caring for siblings or children; and close friends providing assistance in countless scenarios and for myriad reasons.

Unexpected caregivers must navigate uncharted terrain with no map, no manual. They must learn how to become professional advocates in an area they know little about. They have to learn a new language (“medicalspeak”) filled with jargon, acronyms, and six-syllable words one can’t possibly repeat. It’s no easy task and it’s emotionally draining beyond imagination.

Most unexpected caregivers are ill-prepared to add this new dimension to an already busy life. Learning to be an effective advocate, bystander, cheerleader, translator, and super caregiver is overwhelming. Normal routines are out the window and the little time spent on “self” morphs into coming and going, sitting, holding hands, eating on the run (if at all), sleeping less, and losing interest in things that no longer seem important: mowing the lawn (“is that weeds or grass out there?”); doing household chores (“dishes can wait”); paying bills (“do we really have so many bills, wow”); and following up on correspondence (“boy do emails mount up”). Even pets get the short shrift (“no time for walks three times per day — one will do”).

A curious double standard

Surprising amounts of data show that individuals who suddenly become unexpected caregivers often fail to heed their own advice. My friend’s wife recently said to me, “There’s no time to do anything, let alone worry about myself. But, hey, I’m OK. I’m not the one who is struggling to live.”

Unexpected caregivers often find their own health deteriorating at the same time they are focused on others. For the very reasons I argued in last month’s column that everyone needs to increase fitness status to protect themselves from future hospital stays, increased fitness and health status is necessary to be an effective caregiver.

Stress – actually one’s response to a stressful situation – is the major cause of health problems in the caregiver. Clearly, the unexpected caregiver is usually confronted with some or all of the following stressors:

 The stress response

Statistics show 90 percent of all Americans experience high levels of stress at least once every three weeks, often associated with changes in daily routines. Twenty-five percent 0f Americans experience high stress every day associated with work, and 57 percent of all females feel “excessively” stressed most days, usually associated with juggling work, childcare, and household management.

It was Hans Selye, the early 19^th-century Hungarian physician, who first characterized what is now called the “stress response.” As a medical student, Selye observed that patients suffering from different diseases often exhibited identical signs and symptoms. They just “looked sick,” he said.

Selye later described the General Adaptation Syndrome (GAS), a response of the body to acute and long-term stress. GAS details how different stressors (stimuli) – any event or condition, physical or psychological – associate with a wide variety of common symptoms that include fatigue, depression, anger, joint pain, weight loss or gain, anxiety, disrupted sleep, changes in complexion, fear with increased adrenal-gland secretions, and other symptoms.

The stress response, as a whole, includes the following interrelated physical, emotional, and behavioral symptoms:

How we respond to stress determines if we slide down the slippery slope into ill health. Those who have the grit and perseverance to practice being active and eating well find it easier to perform in times of challenge and crisis.

What to do?

While most people have learned how to manage normal stress (is there such a thing?), it’s the extraordinary stress that wreaks the most havoc and disruption. In addition to exercise and nutrition there are a host of other vital strategies for dealing with caregiver stress:

• Being able to accept help from friends who will cook, clean, walk the dog, and mow the grass (if you let them)
• Being present and mindful (don’t ever give in to guilt)
• Connecting to those who can listen, hug you, and share your pain and experience
• Socializing with people who can bring joy and laughter even if it’s just for a few minutes per day.

Exercise opportunities: Study after study convincingly shows exercise (of any intensity) to be the same or superior to drugs (antidepressants and mood stabilizers) in treating stress-associated symptoms.  If you are spending time in the hospital, movement opportunities exist everywhere. NEVER, never take the elevator if you are able to walk the stairs. Meanwhile, leave the room when medical staff arrives to check on the patient (which seems like every 30 minutes – it’s virtually impossible for patients to get consistent sleep). Go get a glass of water, visit the general reception area, or hang out in the hall (that’s where I go) and do some stretches. Any amount will do.

Consider this an ideal opportunity to wear a pedometer to record how many steps you take during the day. I wear one all the time (but I’m a nut-case) and find it very motivating, even during my time at the hospital. Each day represents an opportunity to increase your number of steps. If everyone in your group gets a pedometer, you can share “group steps”… it’s fun, it’s a healthy distraction, and it’s good for you.

Healthy eating opportunities: Like regular and consistent movement, healthy eating is an important pillar in reducing and preventing the effects of stress. Research supports the “comfort food hypothesis” that states stress promotes reward-associated behaviors, primarily reduced dietary restraint, resulting in increased consumption of foods with added sugar and saturated fat. This results from purchases of ready-made, highly processed, packaged foods. Further, comfort foods promote increased cortisol production resulting in heightened stress and weight gain – exactly what you don’t want to happen.

Unlike increasing movement options, healthy eating options require more attention. Healthy eating in hospital cafeterias can sometimes be a challenge, to say the least. Believe it or not, some hospitals have as many as five different fast-food outlets in their cafeteria! Of the 14,267 McDonald’s in the U.S. (as of 2013), there are 27 in hospitals. Yikes! Fast-food outlets are especially troubling because their menus are dominated by foods that are extraordinarily high in calories, saturated fat, cholesterol, sodium, and sugar.

So, if you must eat in the hospital, head for the salad bar, the fresh sandwich section, or the sushi counter. Better yet, bring your own food. Force yourself to go to the market and stock up on fresh fruit and vegetables. These make wonderful snacking foods – since cooking and preparing meals usually is out of the question. Most markets have a deli counter with made-to-order sandwiches that can suffice as a meal. Buy whole grain breads and crackers.

Resilience

Last month, I emphasized how important it is for one to be fit and healthy in order to bounce back from an extreme medical event. Much like the patient, the caregiver who starts higher on the scale of FIT & WELL is better prepared to respond when confronted with powerful stressors.

Becoming an unexpected caregiver is a challenge to personal wellness. We must be vigilant, mindful, and strong to make it a priority to take care of ourselves first, so we can become helpful and supportive to others.

 References:

• Dunckley, V. “The Link Between Light-at-Night, Depression & Suicidality.” Psychology Today — Mental Wealth, March 30, 2014. www.psychologytoday.com/blog/mental-wealth/201403/the-link-between-light-night-depression-suicidality.
• Dunn, A.L., et al.  “Exercise Treatment for Depression: Efficacy and Dose Response.” American Journal of Preventive Medicine 28(1), 2005.
• Ehrman, J., et al. “Exercise-Effective Treatment for Depression.” Clinical Exercise Physiology, 2nd Edition. Human Kinetics. Accessed July 2014.
• http://www.stress.org/about/hans-selye-birth-of-stress/
• Kohyama, J. “Neurochemical and Neuropharmacological Aspects of Circadian Disruptions: An Introduction to Asynchronization.” Current Neuropharmacology 9, (2) 330, 2011.
• Rethorst, C.D., et al. “Evidence-Based Recommendations for the Prescription of Exercise for Major Depressive Disorder.”  Journal of Psychiatric Practice 19(3), 2013.