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.