NIGHTS, WEEKENDS AND HOLIDAYS

This past week, there were a number of news stories highlighting an article posted in the February 20th issue of the Journal of the American Medical Association. In it, researchers verified that "hospital patients who have the misfortune of suffering cardiac arrest [and stroke] at night or on the weekend are less likely to survive than those who have a heart attack during weekdays or weekday evenings... The immediate cause of poor survival on nights and weekends may be one of timing: either there is a delay getting critical procedures or a delay in diagnosing the cardiac arrest in the first place. 'We're literally talking about a difference in seconds, which makes a significant impact,' said Beth Mancini, associate dean of Undergraduate Nursing Programs at the University of Texas at Arlington. "It's time for hospitals to look critically at their processes'... Overall survival was 14.7 percent for nights/weekends, and 19.8 percent for weekdays."

These findings certainly validate my personal experience. Over the eight months of my husband's hospitalization, virtually every time there was an emergency on a "night, weekend or holiday," problems arose. Two of the most notable problems included:

• refusal to call critical personnel at home on Thanksgiving;
• 1 nurse to 16 patient nursing coverage on Mother's Day.

While neither of these or any other "night, weekend or holiday coverage" cost my husband his life, many could have had I not provided 24/7 advocacy coverage. One of the most interesting things about "night, weekend or holiday coverage" is that these are the times when nursing staff inevitably tell you to "go home and rest." Given the above findings and my experience, these are the times where we need to be absolutely certain there is someone present to be with the patient. While nurses are caring individuals and undoubtedly mean it when they encourage you to "get rest," this is NOT the time to do so! Stand your ground and stay by your patient's side during these periods of vulnerability else your rest cost your patient his/her life."

HIS HEALTH AFFECTS MY HEALTH

According to an article posted on HealthDay News for Sunday, February 10, 2008, "having a husband or wife who needs to be admitted to a hospital with a serious illness poses health risks for the partner." Well, duh! (but it's nice to have it validated by statistics). "The culprit: The stress and upheaval the partner experiences while enduring the hospitalization of an ailing husband or wife... Overall, [the] study found that a spouse's hospitalization boosted the risk of a man's death by 22 percent compared with the death of a spouse. A husband's hospitalization increased a woman's death risk by 16 percent.

Some diseases posed more of a burden than others. For example, a woman's hospitalization for stroke, congestive heart failure or hip fracture raised her husband's death risk by 6 percent, 12 percent and 15 percent, respectively. Similarly, a man's hospitalization for colon cancer did not significantly influence his wife's death risk, but other diseases did have a major impact.

A spouse's hospitalization for dementia proved most stressful, raising risk of death 22 percent for men and 28 percent for women... In fact... having a demented spouse is as bad for you as having a dead spouse.

The study also identified certain time frames during which caregivers are particularly vulnerable, including immediately after a hospitalization and again three to six months into the illness.

The findings should frighten family caregivers... but more importantly, hopefully, help them give priority status to their own health needs."

There are lessons in these findings for those of us who care for a spouse or significant other.

1. We must pay attention to our own health first. Most of us get here when all else is resolved. To do so, threatens our own health and no one who loves us would want us to go down for the count while caring for another.
2. We must ask for help. We need the help as much, and sometimes more, than the patient. The patient has his or her health care providers focused on them. Who is focused on us?
3. We must take time for ourselves, without which we have few resources to assist us in dissipating our stress. Whether the time is for a hot bath, a massage, meditation, prayer, exercise, reading or any other "time out," these few moments of peace and solitude are critical to our survival.

Suzanne Mintz, president and co-founder of the National Family Caregivers Association, in response to the findings states that, "Spousal family caregivers' risk of depression is six times greater than that of non-caregivers. And, they are less likely to reach out for help, she said. To protect their health, Mintz urges family caregivers to spread the work load.

Caregiving is much more than a one-person job, especially when both the family caregiver and the care recipient are elderly... Often, spousal caregivers do not want to ask for or take help from their grown children, but that really is the first place we should all turn."

TAKE CARE OF YOURSELF!

WHAT IS YOUR TRUTH?

I received a wonderful quote today that I want you to hold close to your heart. When we care for another, it is easy to forget who we are. Know this...

__________

"What is your truth? Ask your heart, your back, your bones, and your dreams. Listen to that truth with your whole body. Understand that this truth will destroy no one and that you’re too old to be sent to your room.

Move into your truth as though it were an old house. Walk through each room. See, hear, and feel what it is to live there. Try to love what you find, and remember the words that come to you as you explore.

If you embrace it, if you are faithful to it, your truth will reward you with unimaginable freedom and intimacy with yourself and others. You won’t land in a world made to order; some people in your life may not like what you write. But those who remain will be allies, people who breathe deeply and listen. It will feel good to be seen completely and loved as you are. As Natalie Goldberg said after her friend found and read a piece of work-in-progress that she had left out from the day’s writing, 'I feel good because I don’t care that she sees how I really am. I’m glad. I want someone to know me.'”

— John Lee from Writing from the Body, excerpted in Art as a Way of Life

THE DISEASE CALLED DENIAL

On Monday, I returned home from doing three book signings and a conference in Orlando, Florida. One of my book signings was in a Barnes & Noble where, over the course of two hours, I watched this scenario play out over and over again –

• consumer walks in door
• consumer sees table and poster announcing book signing
• consumer reads title of book, Hospital Stay Handbook
• consumer quickly looks away and make a beeline anywhere other than to my table.

This confirms what I discuss in my book, our culture is BIG TIME illness and death adverse. The only people who have engaged me in discussion over the last two years have been folks who have experienced a hospital stay. They want to know:

• did I do right by my patient?
• what else could I have done to support their health?
• what could I have done to keep myself together?
  

and they want to share space and understanding with someone who has been through the same challenges.

The problem with this approach is that there are many things that can and should be done PRIOR to any hospitalization! And, if you wait to learn about these things at the time hospitalization occurs, not only may it be too late but you, as an advocate, may not be in a calm place emotionally, due to the stress of caring for someone you love. Delaying "enlightenment" is typically not in anyone's best interest.

So, if you have not learned about what to expect during a hospitalization, do so now. Hospital Stay Handbook is a good place to start. If you have not taken the actions you need to take to protect yourself and your loved ones, do so now. Maintaining your equilibrium during hospitalization is much easier if you are prepared. Do yourself and your loved ones a favor, GET READY NOW! Don't perpetuate "the disease called denial..."

STRAIGHT TALK ON CAREGIVING AND SELF-CARE

No one ever taught me how to be a caregiver... I responded from my heart when my husband became ill and it served me well while he was hospitalized. The same response almost killed me when I returned home and spent the next five years helping him regain his strength and his life.

When people used to tell me to "take care of myself," I dismissed the thought. However, it is the best piece of advice I can offer in regards to caregiving. If you are willing and ready to place yourself first, then join me as we explore tactical methods of caregiving and self-care in the midst of one of life's greatest challenges. If you are not willing or ready to place yourself first, you have two choices:

• join me to learn about the price you will pay; or
• ignore this plea for your health and life and pay the price.
  

There really is no other choice. Know that I understand your decision. I've been there and made both choices, and paid the price for both choices. I make no judgment. Just remember, there are no "free lunches" in this life...

On this blog, we will explore recent medical advances, terminology, resources, legal information and coping strategies. Let's engage in dialog around what we know about caregiving. Whether your perspective is as a:

• paid professional;
• volunteer;
• loving family member;
• friend;- newcomer; or
• long time provider,
  

we have all adopted coping strategies" to assist us, some productive and some destructive. Understand that what we "know to do" at a "head" level often does not translate into action when it involves ourselves and those about whom we care. This is especially true for professionals who make their living giving care and then fail to care for themselves and apply what they know when the crisis comes home.

You are wise about what works for you in life. Share your wisdom with all of us as we struggle to hold onto ourselves while holding another in sickness and/or injury.