Caregiver Burnout: The Unspoken Suffering of the Caregiver

Caregiverby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

Speak to any caregiver and they will share with you the rewards of caring for a loved one when tragedy strikes. In the beginning, the tasks are met and the list items ticked off one by one. It feels good to be unselfish; the endorphins are sending us messages that we have become the noble self that we had hoped one day to become.

Months go by and the caregiver looks up and thinks ‘Oh my God, will this ever end? Where am I in this process and how did I lose my way?’ The caregiver is not a machine. No human being is programmed to be on high alert 24/7, ready to handle any emergent situation that arises. The caregiver is the unselfish, ever giving angel of mercy residing in the home of a cancer patient. Friends and family can see the signs of burn out, but the caregiver wears this as a badge of pride often until “something gives.” It may manifest as an emotional outburst or extreme exhaustion may take over, and all of a sudden, the world of the caregiver has crumbled.

If you are caregiving for a spouse, stop what you are doing now and sit down with your loved one and tell each other why you came together and why you have stayed together. Yes, caregiving may be somewhere on the list, but my hunch is that it is not one of the top reasons why you are together. Despite the diagnosis of cancer, a patient and a caregiver can still find joy in their relationship and, yes, even a laugh or two. Come back into the 20th century, spend a dollar and get Amazon Prime or Netflix, and look for those comedies that will make you both laugh out loud. Laughter is the best medicine, both for the caregiver and for the patient. Walking into the home of a cancer patient should not feel like walking into a church or a museum, but a place where a living, breathing human resides.

Caregivers, take 30 minutes each day for you. Do this early in the journey. In academics, we call it protected time. Whatever activity you choose should be strictly for your benefit. If you can take a bit more, join friends for lunch, or better yet, go to an exercise class. Invite them for dinner so you both can enjoy socialization and stimulating conversation that does not revolve around “when the next treatment is scheduled” or “have you taken your medicine yet?”

Let’s get the conversation going. Please let us know what works or has worked for you during this stressful time. Caring for the caregiver should be a priority, as few realize that the caregiver is also suffering during this cancer journey.

Thank You from Mary Hesdorffer

Mary Hesdorfferby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

It feels like a time warp as we move from project to project, one day blending into the next. We are deeply immersed in planning three regional conferences before this year ends, and projecting what is in store for us in 2015.

I would like to take this opportunity to personally thank all of those who participated in our 2014 Symposium, which took place in early March. It is so important that we gather together to address the individual and global needs of the mesothelioma community. Weren’t our doctors amazing? I was so grateful that they came out in large numbers to support us and to impart valuable knowledge and support to those in need.

I would also like to thank the individual members of the staff who made the conference appear so effortless.

Erin Maas was responsible for the site location and all of the logistics that go along with running a conference. Thank you, Erin, for a job well done.

Maja Belamaric and Beth Posocco were in charge of communications and marketing the conference, work that is not always visible to the public. The live stream attracted nearly 600 viewers thanks to their tireless efforts to ensure that it was properly managed and advertised.

Erica Ruble was the unofficial hostess of the event making sure that everyone was welcomed and warmly introduced to others. Her fundraising knowledge and encouragement to others has helped us to grow exponentially.

Dana Purcell was responsible for planning many of the supportive care and fundraising sessions. I think we can all testify to a job well done and we look forward to her continued work on community events and individual fundraisers over the upcoming year.

Last but not least is our government affairs director, Jessica Barker. Jessica is well-known on the hill championing our causes and making valuable connections with politicians and government entities to provide our community with a strong voice in Washington. You will see Jessica making her rounds to many political events and she is a sage advisor to both Melinda and me. If you are planning to attend the ADAO conference taking place in Washington, DC in April, please introduce yourself to Jessica as she will be representing the Foundation at this asbestos-focused event. Unfortunately, I will be unable to attend, but I wish Linda Reinstein a successful conference.

Finally, our CEO Melinda is really owed a debt of gratitude for managing the business side of the Foundation and ensuring our financial health so we can remain strong in achieving the goals of our mission. It is a pleasure to work closely with Melinda as she brings her impressive non-profit background into the discussion and helps me to advance the scientific agenda of the Foundation, proving continuously that two heads are better than one!

Keep in close touch with me and let me know your thoughts on how we are doing. Also, we will soon be announcing the date and time for another telephonic town-hall meeting to discuss the future and current state of the Foundation.

Holiday Suggestions for the Bereaved

Learn more about supporting those affected by Mary Hesdorffer, NP, Executive Director of the Meso Foundation

Having suffered a profound loss can make the holidays appear to be the most dreaded time of year. How do you cope when others around you are caught up in the giddiness of the holidays and you find yourselves perhaps a little resentful of their good cheer? I think a basic principle is that to give is to receive. Perhaps you can volunteer for an organization that has an event during the holidays. This provides you with a ready excuse to reject invitations to events that you are not ready to attend this year and an opportunity to focus on the suffering of others rather than yourself. It is not uncommon to meet others who volunteer during the holidays who also have suffered a loss. It may prove to be fertile ground to establish new friendships in addition to igniting a passion to help others less fortunate than you.

If you do wish to participate in some of the holiday gatherings, establish that you intend to “drop by.” This will provide you with the comfort of knowing that you can leave at any time if it doesn’t feel right or if you begin to feel overwhelmed without having to offer excuses. Mix it up a bit – perhaps stop by a few events, which will keep you moving and interacting on a less focused conversation. The first is always the roughest. Perhaps you have a friend who also suffered a loss who would be willing to be your “partner” at these gatherings. You can cover both families and friends, and brining an unfamiliar guest with you will distract the conversation from your loss to a more superficial meet and greet, which is perhaps all you can handle this holiday.

Maybe the best plan of all is an escape. A friend or family member might be a willing partner to travel with to explore an unfamiliar region of the country or perhaps new customs and celebrations in a foreign country. You can be selfish this holiday, and most will understand and give you the space and time needed to heal from your loss.

I just finished reading “The Year of Magical Thinking” by Joan Didion, and I found it very helpful in understanding the first year. Though many in the community have shared their loss and grief with me, this book presented a very clear insight into the loss and the effect on those left behind. You may read it, or perhaps gift it to someone who wonders what is “wrong with you.” Grief is real; it can be measured by many physical manifestations. The healing process varies from individual to individual with no time frame or expectation to return to the person you once were. It is a time of sadness, personal growth, and emergence and reflection on what was lost, but also a hope that the future is still yours to enjoy.

Those affected by mesothelioma can benefit from support year round. Learn more about how you can get involved.

The Holiday Table

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Holiday table place settingThe holidays are approaching, and the dreaded holiday feasts begin. The mesothelioma patient who is undergoing chemo, or perhaps has not regained their appetite, can be very uncomfortable sitting at a table laden with holiday goodies and an expectation that they will dive in with relish.

So what tips can we provide for those of you preparing the meal? If you are fortunate enough to have a full set of china, pull out those 7-8 inch luncheon plates and set the table. If not, thrift shops have a ton of mismatched sets that you can put together to create a unique holiday-scape. Placing a scant amount of food on a smaller dish gives the appearance of a well laden plate, thus making the patient‘s lack of appetite less apparent to others at the table. If you are pouring a holiday cocktail, move to sherry glasses. Your guests can refill, and the patient again can enjoy some holiday indulgence (check in with the medical staff or pharmacist for possible medication interactions with alcohol). Most cancer patients can enjoy a glass of wine, which can help in terms of relaxation and appetite stimulation.

If you have been stretched to the limit with your caregiving activities and are hosting the holidays, not only enlist your guests to prepare an entrée or appetizer, but consider catering some or part of the meal. This is a time to enjoy your family and friends, and to do so means that you have to ease some of the burden that you carry. Perhaps you are like me – someone who truly takes pleasure in the whole process of cooking, planning and executing the meals. If so, then you may require some respite care with your caregiving duties. This is a perfect time to call upon friends or family members to assist. You can consider hiring someone to help around the house in whatever capacity you need. A patient in this role can ask friends and family that they work well with to be their “kitchen assistants” and do more of the directing and tasting of the courses to be served.

Often, we get so caught up in the gifting and the appearances of the perfect holiday that we forget the true spirit of it. How simple would it be to request that, in lieu of gifts this year, you would like to plan an evening out with close friends and family?

This is your holiday to plan and enjoy – savor all the joy of the season.

Update from the ED: My time at UPenn and the Fox Chase Cancer Center

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Mary HesdorfferI received an invitation to attend the first ever community lung cancer day at Fox Chase Cancer Center in Philadelphia, Pennsylvania. Though the focus was on lung cancer, I was given the opportunity to have a table where I could promote the work of the Foundation as well as mingle with the community. I did not meet any mesothelioma patients, but I did speak with two individuals who lost parents to mesothelioma, and they thanked me for our work.

I was also able to meet the lung team, one of whom trained with Dr. David Sugarbaker (small world indeed). The thoracic nurse navigators were very interested in our work and agreed to provide their patients with our brochures, as did the respiratory therapists. We have awarded a number of grants to the researchers at Fox Chase Cancer Center, and Dr. Joe Testa, a past recipient, was given our pioneer award last year.

This event followed a very successful one day mesothelioma conference at UPenn.  Melissa Culligan took on the main responsibility of organizing the conference and did a superb job. Don’t be fooled by the sweet and quiet disposition of Melissa, as underneath is a stern taskmaster keeping the docs on their toes. She is the heart of the UPenn program. Dr. Joe Friedberg assigned the topics for our presentations and kept the momentum going with his usual god humored quips. I was given the presentation title “the unmet needs of the mesothelioma patient.” As promised, I brought your voices to the presentation, and attendees were moved by your stories and our pleas for new drug therapies, better opportunities to participate in clinical trials, as well as more supportive care services.

Dr. Lee Krug, who will be accepting the role of BOD chair in January also presented, and I was so pleased knowing that this well-respected medical oncologist will be leading us to fulfill our mission. Dr. Raffit Hassan, former SAB chair caused quite a stir with his report on the progress he is making with his trial of SS1P. I received some exciting news from Dr. Steve Albelda, a member of our SAB; He will be taking a sabbatical in Hawaii for 3 months to collaborate with Dr. Michele Carbone. It is very nice to see these relationships building and the sharing of resources and data.

As is usual at UPenn, their energy and enthusiasm for treating mesothelioma is heartwarming, and I left knowing that they will continue to build and expand upon the terrific services that they already offer to mesothelioma patients. Dr. Friedberg trained a young surgeon from Taiwan, and he flew in to be part of the conference as did Dr. Paul Bass from the Netherlands. I was proud to be among those who presented, and I will be updating you on the science sessions at both this conference and the conference in Sydney. It is obvious to me that we are seeing the fruits of our labors with more trials having a targeted approach based upon much of the science that we have funded.