1. What is in your background that made you write this book?
Three overwhelming feelings converged to prompt me to write this book:

• anger about my husband’s illness and set-backs, the major one of which was caused by an infection he contracted in the hospital;
• frustration regarding the problems we had experienced and how unprepared I had been to address them in the early days; and
• despair regarding the medical system coupled with the denial of many to actually face the issues of their loved one’s illness/injury and treatment.

When I felt helpless, I didn’t take the necessary actions on Bill’s behalf because I didn’t know what to do. The things I learned to do made a BIG difference in my husband’s recovery but then, I had almost 8 months to discover them. Most hospitalizations are considerably shorter. As a result, I wanted to “jump start” other advocates by letting them know what they can and should do when family or friends are hospitalized.

2. Explain what you mean by preventing medical mistakes.
The U.S. Bureau of Labor Statistics projects a shortage of one million nurses by 2012, a situation that was already evident within every hospital that cared for Bill. Because of “managed care” as dictated by insurance carriers, doctors are required to see 2-3 times more patients in order to achieve the same financial return. Hospital administrators are held to the same profitability goals that drive private sector CEOs since today, hospitals are businesses. And, let us remember, we are all human and make mistakes, even doctors! As a result of all these issues, everyone is vulnerable within hospitals today.

3. Is there a big problem with medical mistakes happening in hospitals?
Here is but one example of hospital mistakes… In an AARP article entitled, "What to Look Out For to Avoid Hospital Mistakes," the following reveals our vulnerability with regard to medications administered in a hospital setting.

Bill would have been victim to medication mistakes at least ten times without my presence and oversight.

4. How did you use prayer, and spiritual healing with your husband?
We know from many studies that concentrated attention on a single person/issue by a group of people has impact. In reality, this is a partial definition of prayer. Regardless of your spiritual path, ask for and accept the offers of support, whether actual or intentional. The church across the street from our house placed Bill in their prayer circle. There was a direct correlation between what they prayed for and the return to health of Bill’s failing organs.

5. Tell us about one thing you did to create a partnership with your medical team.
I offered repeatedly to help the nurses—make the bed, run errands, assist with dressing changes, do laundry, watch monitors, secure linens, call doctors, look up medications, answer phones, lift the patient and on and on. I asked them to explain what they were doing and “teach” me about patient care. I brought them doughnuts. I thanked them for their work. I brought outstanding nursing performance to the attention of Administration (and failing performance, as well!). All in all, I did the non-technical part of their job for my patient, freeing them up to do that which I could not. Not only did this help them, this helped me! I felt like I was making a contribution and, as a result, knew I was part of Bill’s recovery.

6. What is the single most important thing we need to know about preventing medical mistakes?
Every hospitalized patient needs an advocate 24/7. This is especially true during the periods of time that most hospitals tell us to go home—nights, weekends and holidays. During these times, hospitals have the lightest staffing requirements filled by the least senior and experienced care providers, both conditions of which place our patient at increased risk.

7. How and when did you discover how to be a healthy caregiver?
By not being one! I didn’t pay attention to the first and last chapters in my book, which are both titled with the recommendation "Take Care of Yourself." It was only after five years of solo caregiving that I took stock of my own health and discovered:

• 100 extra pounds on my body in all the wrong places;
• high blood pressure that was not being controlled by three medications;
• extremely high triglycerides; and
• metabolic syndrome, a precursor to diabetes.

In order to address these urgent health issues, I had to completely remove myself from any caregiving and focus solely on myself, the result of which was a divorce. While I am much healthier today, in retrospect, I know now that my failure to attend to my own issues is very common among caregivers. Today, Bill and I are renegotiating our relationship as we finally acknowledge that we are no longer the same two people that entered the hospital almost seven years ago.

8. What is the difference between a healthy caregiver and a loving family member?
Unless a family member approaches caregiving with a commitment to care for their own health FIRST, they will become an unhealthy caregiver and potentially, in the case of marriage, a soon-to-be ex-family member…

9. Can you give us a few examples of your 14 practical steps to being a healthy caregiver?
Everyone, regardless of your age or health, should have a Durable Medical Power of Attorney, a Living Will and a Power of Attorney (also called Advanced Directives) executed. We never know when they may be needed and their presence provides everyone with a sense of calm about what will be done, should the unthinkable happen. Denial and refusal to deal with “uncomfortable” subjects and situations created the heartbreak the nation witnessed in the Karen Schiavo case where a lack of Advanced Directives caused a rift within her family. Regardless of what you want and believe is right, make your wishes known!

In the same vein, read and use the Patient Advocacy Statement. It represents the clearest statement of your rights and hospitals must follow their own rules or risk litigation.
 

10. Why do people need to learn to change the way they take care of loved ones?
If you look at healthcare as a three-legged stool -

• the patient
• the family and
• the care community,

everyone knows what happens when one leg is removed. Today, healthcare typically only sees this stool with two legs—the patient and the care community. It OUR responsibility to insist on the addition of the third leg, without which we risk the health of our patient. Patients are not at their best when they are horizontal, on drugs, scared, feeling helpless and being attended to by individuals who are standing over them. Patients need help and their 24/7 advocates can and should be that help.

11. You speak at churches, corporations, and universities about this subject. Besides your experience with your husband, what makes you uniquely qualified to do this?
I am an organizational consultant and that which I advocate will clearly create the impetus for organizational change within hospitals. My belief system says that everything is connected to everything else and that is certainly true within both the body and hospitals. As a former human resource professional I handled medical claims for my employers. Additionally, I dealt with many families that went through versions of Bill’s and my travails and learned from their experiences.

12. You are writing a second book, Lantern of the Soul—what does this have to do with medical mistakes and being a healthy caregiver?
Lantern of the Soul will feature success stories of individuals who have stepped in and served as an active healthcare advocate, regardless of the outcome of their patient’s illness or injury. After all, we are responsible for the input. We are not responsible for the outcome.

13. What steps can I take to begin the process of "lighting the lantern" of my soul?
Step into the light of knowledge and out of denial. Recognize that healthcare today looks little like that which our parents received. Without every voice raised, we risk the health of all. Join me in advocacy and make a difference!