Dr. Barbara Sunderland Manousso: Confessions of a Caregiver/Spouse/Ombuds

Dr. Barbara Sunderland Manousso: Confessions of a Caregiver/Spouse/Ombuds

Years ago, I heard that those afraid of dying are those who have not lived.  I have kept this in the front of my mind as signage, since husband John Manousso, now almost 83 years old, was diagnosed in May 1995, the weekend of our second wedding anniversary.  We have been fortunate to also keep this philosophy as a mission for the Houston, Texas area support group members that we lead and encourage, since 1996 with three years off, while I was earning my Ph.D.

We were fortunate to have found IWMF founder and WMer, Dr. Arnie Smokler and his wife Bernie, at the beginning of our WM journey.  Arnie and Bernie were in constant contact with us to help him set up his vision and goal of IWMF.  However, at that time and newly diagnosed, John didn’t want to be in a support group, needless to say lead one, replete with what he perceived as old, sick people.  Arnie insisted, so we took on the leadership role, but found our WM support group members vibrant, all ages, educated, and invested in seeking good health through active, productive adventures with a quest for information.

When I was asked to write about being a “caregiver”, I was surprised.  I had expected to just write about my husband’s achievements, journey to better health, and his 26 plus years of triumph over WM.  From my Master of Public Health degree, to being a professional consultant who set up health care non-profits and raised funds, a federal nursing facility ombudsperson, and mediator for elder and adult care, the concept of “caregiver” was for taking care of seniors, not tailored for those who are joie de vie.  Certainly, not the role of a wife who has also been taken care of by her husband when needed, as well, with her own chronic health issue.  Our symbiotic relationship rotates our health issues, so I have not perceived myself as the caregiver, an odd label for a spouse.  Our health care is through reciprocity, a long-term investment.

My husband of 28 years, John, Greek by blood and French by citizenship, was born in Dire-Dawa, Ethiopia, during WWII, then immigrated to Houston, Texas, in February 1961, when his sister married an American. Now he has dual citizenship.  He excelled as an international businessman, international logistics manager for 38 years at a major oil field manufacturing company, mediator, arbitrator, and fluent in six languages.  John has placed four times in 26.2k marathons, even in his mid-fifties.   He doesn’t drink nor smoke, so he was shocked when diagnosed with WM after feeling quite fatigued, bad sweats, odd fevers, and nose bleeds, especially as a new groom.  Looking back, he had been misdiagnosed for years.  When his long-visited family doctor retired, we got an alarming call from his new and younger internist that John needed a hematologist immediately.  That’s a whole epic journey and horror episode unto itself.  His old family doctor didn’t notice the patterns of blood labs that screamed for more testing.

John and I have been on over fifty cruises all around the world on every ocean, river, and waterway and to every continent, at least once.  Our last trip, December 2019, was to Antarctica on the longest ship to ever go there by 130 feet.  Incredible adventure at the end of the world!  We’ve been to the end of the earth, but not the end of life.  I can’t fix John’s WM diagnosis; that’s not my job.  But as a sentinel for his health care, these are my words of wisdom for us and others.

Here’s a brief check list, in any order, of action considerations for supportive care:

  1. Listen: Listen to their complaints of not feeling well.  In the middle of HEART is HEAR.  Take action whenever concern warrants and calls.  Listen to the sound of silence, too.
  2. Research: Look for good information to make the whole person more comfortable from a variety of quality, non-commercial sources.  Constantly, be aggressive about researching information online, in libraries, and from the doctors.  Science changes constantly, so IWMF is certainly your best and trusted, first resource.  Use the doctors most specialized in this rare disorder.
  3. Distract: You are not the disease.  Life needs to be lived.  Where are the cruise brochures?  Keep living!
  4. Record: Keep records of lab numbers and plotting trends. Before the health portals that often don’t work well, we used and still do an excel spread sheet to record disease progression.  Diaries are also helpful for memory jogging for timelines and arcs of events and interventions.
  5. Challenge: Question what doctors are doing and ask why. Be sensitive and alert to your instincts. Use your cell phone to record each doctor’s meeting, whether in person or telemedicine, and photograph all pills, chemo drips, and anything to be taken and ingested in any form, every time.
  6. Protect: See #5 and be mindful that mistakes happen that can be deadly. Always photo the IV bag or pills given BEFORE taking.  When getting an IV, especially the first time, photograph the bag with the label. If something appears or is given to you that you weren’t expecting or don’t recognize, stop immediately and clarify.
  7. Be an aware, personal advocate: When taking chemo, make sure two knowledgeable nurses double-check and say aloud the volume and content of the IV. Ask again what is in the IV bag and make sure the protocol was what your doctor had told you to expect and the information that you have on your audio tape and that the doctor wrote down. Don’t assume that the medication ordered or delivered is correct. Don’t be pressured or rushed to just accept it.  We have had too many stories of errors from our support group members, fortunately caught before being fatal. Communication from doctor to patient, to nurse, or to IV team can get confused.  Don’t be a victim.
  8. Don’t be afraid to negotiate health care costs: Explore treatment options and medical care.  Ask about trials and alternative medications.  Money saved can be significant; prices change even in different zip codes (medical speak: geozip) near you.
  9. Housekeeping: Make sure that your legal information is current in both general and healthcare powers of attorney. The healthcare power of attorney contains both a living will and a HIPAA [Health Insurance Portability and Accountability Act] authorization that gives the support person broad authority to get health information and help you make decisions. (I carry them with me at all times on a USB memory stick and have them on my cell phone. Evernotes is a great phone app.)
  10. End of life: Our COVID project was selecting lovely cemetery plots with a grand monument that we could enjoy from this side of the grass. That aside, we now don’t have to think about our trip to perpetuity anymore, so we can be in this reality and not be focused on an end game tomorrow.

Control over our destiny is a human quality that should always be embraced and sought.

When it has been my time to take the lead in our relationship, because John needs strength while feeling overwhelmed with medical worry or discomfort, I am not his cure, but I can be the calm in the storm, the extra ears, the defender from insensitive doctors and wanna-be shaman, and the fun travel planner.  The goal, at this time, is for me to be alert, focused, and healthier, no matter what’s going on around me.

There are no mistakes in helping your spouse or family member; “caregiving” is like speaking a foreign language, the words are welcome, even if mispronounced.

Written by Barbara Sunderland Manousso, Ph.D., MPH, CFRE, with the able team of John Manousso (WM).
Co-Support Group Leaders in Houston, Texas