The Importance of Self-Care for Caregivers

Mesothelioma caregivers need to be mindful of taking care of both their loved one and themselves.by Mary Hesdorffer, NP, Executive Director of the Meso Foundation

Mesothelioma caregivers are the unsung heroes in the war against meso. Those of us intimately involved in healthcare know that exam time with doctors is limited. Billing is based upon a construct of ideas and the caregiver does not fit into this for- profit medical system. As healthcare professionals, we see the caregivers in the exam room, often times struggling with emotional or physical problems, and perhaps we acknowledge their difficulties, but the focus remains on the needs of the patient. The caregiver is left to their own devices with little or no respite in the horizon during the continuum of the illness.

Knowing the difficulty of the role, I would like to encourage all caregivers to take advantage of the support services provided by the Meso Foundation. The Foundation provides several different options for caregivers to receive the help they need. They can participate in online or telephone support groups, or find individual support through the Foundation’s Meso Connect program. All services provided by the Meso Foundation, including those for caregivers, are very meso specific and include others who find themselves in the “trenches,” and who can empathize and share tips learned along the way.

For many complex reasons, mesothelioma caregivers, and society as a whole, tend to elevate the patient to a status of perfection, which can make it extremely difficult to maintain a healthy relationship. Caregivers assume their role most frequently because they love the patient, and they need to dig deeply to rekindle the intimacy that they enjoyed before the diagnosis. Intimacy involves sharing and caring. Real conversations need to take place, where caregivers can also express their fears, anger or disappointment regarding the disease and the changes it has brought to their lives. Caregivers also need to find the joys of daily living, as they are here in the present and should not lose these precious days wallowing in despair. A night out or watching a movie together with their loved one at home can do wonders to transport a caregiver from their daily struggles.

A caregiver needs care as well. Self-care means finding an activity that helps with relaxation and allows the ability to refocus on personal needs to renew and be able to provide the high intensity care that this disease demands. If money is tight, there are many activities that have little or no cost involved. I would suggest ways to take a break from current duties. A visit to a museum, sitting in a beautiful garden, yoga, tai chi or some other calming exercise can help soothe frayed nerves and encourage healing from within. It is ok to say no to unreasonable demands and to carve out some personal time. In order to provide care, caregivers must also be cared for – it is a two way street.

This disease is a lived experience by the caregiver as well as the patient. It is not unusual to feel sad and anxious during this time. Talk therapy and sometimes medication can be beneficial. It is not a reflection of any weakness when a caregiver requires a personal intervention. No one was born with an intact set of coping skills. These skills are developed along the way and they are often not sufficient to help during this time. A trained therapist can aid in exploring and strengthening coping skills and provide a safe place for a caregiver to share struggles and find ways to cope better in their role.

It can be especially rewarding for caregivers to step back a bit from the role and focus on why they are caring for the patient. Sometimes, it seems that caregivers are living a double life, perhaps as a spouse as well as a caregiver. They should avoid becoming too focused on the medical aspects of care, as this may result in distance from the emotional connection that is vital to the caregiver-patient relationship. It is important to take time to reflect, rest, and engage in activities that bring pleasure without guilt. Engaging with and accepting assistance from friends and family can ease the burden. When others offer to help, mesothelioma caregivers must think about what they need as well as the needs of their loved one. They should dedicate 30 minutes to an hour each day to self-care.

The Meso Foundation has a full staff as well as volunteers to help our caregivers. I personally am available to speak to you and assist you on this journey. You can also visit curemeso.org to view the caregiver resources available at the Meso Foundation.

The Power of Community

Reading the recent postings, I was struck anew by the sheer power of a force that has never stopped astonishing me since the day of my diagnosis, over 6 years ago. I’m referring to the power of community, and nowhere is everything that term implies more amply demonstrated than here.

I’ve frequently mentioned how, as a nurse, I’ve seen a lot of support groups and support systems, but nothing matches the mesothelioma community for determination, openness, and unconditional compassion.  We are a diverse group in terms of age, politics, background, and beliefs, and yet these differences are instantly swept aside in order to focus on our shared experience. We nimbly bridge any gaps for the purpose of communicating the essentials and bolstering our common humanity.  In this age of fragmented societies, the rest of the world would do well to model what we have put into practice so instinctively.

I’m not just singing the praises of this community for lack of anything better to do – I think it’s important to review this phenomenon on an ongoing basis to point out just how vital a role it plays in the lives of others. You have only to look at how the tone of what is written by a newcomer changes over the course of a few posts to see the impact clearly. What starts as tentative and fearful morphs into hope and relief, and even joy. Where else on earth would any of us find the opportunity – indeed, the privilege – to have such an effect on the lives of others?

This is the nature of awareness. We seek to spread awareness not only to call attention to our own plight, but to shine a light in the darkness so that others who are in need can find the same optimistic path. For every newcomer who finds their way to this resource and says “thank goodness I found this group”, there must be many others who for one reason or another, never realize we are here.  I for one cannot imagine dealing with a diagnosis of mesothelioma without the benefit of the “common unity” the Foundation provides. This is what makes awareness activities so critical.

We all need to invest in an effort to “spread the word”. Yes, we may make other people aware that meso exists and requires funding. But realistically, we all know how many causes there are out there clamoring for the attention of busy individuals who are leading ‘normal’ lives – if they are lucky, these people may never attach much importance to what we say about meso.   There will be, however, many people who are NOT so lucky, and who will hear (or have heard) the word “mesothelioma” from the lips of their doctor and not know what to do or where to turn next. They are our primary target audience.

Each of us can acknowledge what the support of the community has meant to us by ‘paying it forward’. We can reach out to others lost in the same dark despair that once colored our own lives, and do so with a minimum expense of time and energy on our parts. And there’s a plus: in doing so, we strengthen ourselves and our community in the process…

The Foundation has brochures for patients that can be left at physician offices, cancer clinics, etc.  Think about your area and where such materials might be most likely to reach their intended audience. In addition to the brochures,  the Breath of Hope newsletter (consider passing your copy on when you’re done reading it) can be left in waiting rooms, pharmacies, wellness centers where potential patients might see them, or in locations frequented by at-risk populations (like union halls or veterans’ centers).

If you’re able, add the personal touch to your outreach activities. Let the places you visit to leave materials know that you are available to speak to any patient who wants more information. Even if you can’t get out and visit places, you can call doctors’ offices, clinics, etc., and/or send them letters letting them know you are available to help any mesothelioma patient/family who asks for such assistance.

One caution – and I hate to bring it up in this heartfelt discussion about human contact, but we do live in thereal world after all….. Be prudent about passing out personal information. Consider setting up a separate email address that can be used solely for outreach efforts and responses, and don’t readily supply your address until you are certain about doing so.

Lately, I’m realizing that I really am NOT alone – there are a lot of us here in the Northeast, particularly in the PA, NJ and NY region! We’ve gotten together on an occasion in the past, but we’re currently contemplating taking it one step further and pooling our ideas, energies and resources to organize an annual September fund-raising and awareness activity. We’re already exchanging emails on the subject, and hope to all meet somewhere mutually accessible for lunch and brainstorming.

Perhaps, like me, you have other members of the meso community near where you live. Wouldn’t it be great to meet somewhere to talk face to face, and share resources and tips pertinent to your area? Even if there are just a few of you, think about meeting in a coffee house or library. Consider going together to local civic centers or groups to offer resources and information to other interested people, bringing with you brochures, newsletters, or even a laptop for referencing the Foundation website.

Community occurs on so many levels…. It happens every time you post in the online forums to share tips, consolation, or joy in a good diagnostic result. It happens every time you share your phone number or email to a ‘newbie’. It happens every time to talk to the other patients in the waiting room at your doctor’s office or chemo clinic.  It extends out from the web and the Foundation into the wider human community, into yourcommunity.  In the face of a powerful enemy – meso – it is an even more powerful medicine, and YOU are its distributor!

We live in a very, very big universe, relatively small beings on a relatively small planet, circling a relatively small sun. Compared to the timescale of worlds, our lives are brief, and they often seemed plagued by cruelly capricious fate. What gives those lives their dimension, depth, and meaning is ours to fashion out of whatever we have at hand. I’m going to paraphrase Bec again: true star children fashion light out of darkness, to both illuminate their own path and shine a light for others who follow. The coming months of approaching winter, with the short days and lengthening dark, seems like an especially good time to find ways to shine!

~June Breit

Peer to Peer Support

Peer to Peer Support is a way for mesothelioma patients and care givers to provide mutual support to each other in a mutually beneficial relationship.

Introduce yourself and let them know that you are calling as a volunteer of the Foundation.  You are representing the Foundation you have all the support of the Foundation.  The staff will be willing to assist you in any way to make your peer to peer counseling successful.

Exchange phone numbers and email address at this time.  If you think that they might benefit by speaking with another patient that you are familiar with please again let the medical liaison know prior to making this referral.

Make a note of the time zone as this can get confusing when you have a number of people that you are in touch with.

Try not to juggle too many individuals at once, you have your own burdens as well and though this is a mutually beneficial exercise we all need time and distance.  It is not quantity but quality of the interactions.

It is most beneficial when a session is prearranged so time can be set aside for this purpose.

You must agree to remain neutral, providing positive support only.

In this role you are not judgmental or critical and do not give advice.  It is meant to be a sharing of experience both yours and the individuals.  Do not undermine their relationship with their physician, be supportive and listen and ask if you can share this information with the Medical Liaison should you suspect a problem.

Medical referrals should also go through the Foundation.  Not every doctor or treatment is right for everyone.  If you feel that the person is in crisis refer them back to the Medical Liaison for intervention.  It is easy to get in over your head and this can lead to a poor outcome.

The person who is listening does not direct the conversation but allows those in need to express emotions providing a safe release for this exchange.  Many have no one to express their inner feelings as they often feel that they must remain strong for the patient or caregiver Allow ample time for these calls and reschedule if a conflict is anticipated that might interrupt the session.There is an ongoing agreement of complete confidentiality.

You may not “click” with this individual, if this is the case let the medical liaison know and she will reassign them.  It is not a failure on your part just human nature.  It also might be a reflection of the situation or crisis this individual might be experiencing.

If your circumstance changes and you cannot be “there” for this person due to a change in your circumstances be honest with them and let us know so we can assign someone else to provide support during your absence.

Listening Skills

Take your time, allow the person you are supporting to speak fully and feely without interruption

Let them know that you are really listening.  Rephrase and direct a question back.  This can help to clarify what the individual is thinking and help to generate discussion on a particular topic that they might be having difficulty with.

Keep a calendar and write in important dates, their next chemo treatment, follow up appointment or Ct scans.  Knowing that you are truly interested helps to develop and foster the relationship.

Take care of yourself as well.  It can be very difficult when the person you have been assisting progresses on treatment or if they die from this disease.  Let the Foundation know when these events occur so we can assist not only you but the patient or family member of your peer.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376