It takes a village to get a patient through a stem cell transplant – doctors, nurses, social workers, psychologists, dieticians and several others play important roles. However, in order for a stem cell transplant to be initially considered as a treatment option, the patient must have a caregiver. A caregiver is typically not a trained professional, instead an individual (or a group of individuals) from the patient’s life who essentially is willing to put their own life on hold in order to provide a myriad of responsibilities for the patient as they go through this intense medical process.
Although caregivers are signing up for a noble and altruistic task in service of their loved one, they are also entrusted with safeguarding a patient’s wellbeing; their duties tend to be highly time consuming. As a result, the relationship is exposed to role changes, chronic stress, and often come at a personal, professional, and financial price.
With this level of responsibility, the broad range of duties and the chronic nature of the involvement, it is not a surprise that caregivers are at a high risk for burnout which can lead to physical and psychological distress. Studies have shown that caregivers are often at risk for high levels of anxiety, depression, posttraumatic stress and sleep and immune difficulties. These rates are often higher than those experienced by patients.
Considering this background, preventing caregiver burnout and distress needs to be an important part of the entire transplant experience. Simple strategies to manage and cope with the stress of transplant can be extremely effective in this process. Some strategies that may be helpful include:
Self-care: Caregivers often feel selfish when they allocate even short amounts of time to taking care of themselves. This leads to burnout and potentially impacts the patient’s wellbeing. Self-care activities do not need to become stressful or time consuming chores. They can be as simple as taking a walk around the hospital, listening to your favorite music while waiting at appointments, engaging in hobbies regularly, going home to sleep while the patient is in the hospital and eating regular, nutritious meals to name a few.
Mindfulness and relaxation strategies such as deep breathing and meditation are very handy tools and can be performed anywhere in short amounts of time – ask your psychosocial team member how to incorporate these into your self-care plan.
Releasing Control: When entrusted with this high level of responsibility, it can be very tempting to feel responsible for every aspect of the patient’s care. It is often helpful to educate yourself on roles and expectations of being a caregiver, trust that you are not alone in this process, and recognize what parts of treatment are within your control and what is beyond your help.
The transplant process involves a lot of uncertainty and requires flexibility on part of the patient and caregiver – expect this as a normal part of the process and plan on being flexible. This can be accomplished through regular and open discussions with the medical team as well as the psychosocial support team. Try to take one day at a time as opposed to rushing too far into the future – baby steps are the key.
Seeking and Accepting Help: Asking for and accepting help from others is one of the most challenging processes of being a caregiver. A trap we regularly see caregivers fall into is trying to singlehandedly shoulder the entire caregiving responsibility (especially because it tends to allow for a greater sense of control.) However, this is one of the leading causes of caregiver burnout and can be easily managed by involving more supportive and trustworthy individuals in the caregiving team.
During this process, several family members and friends will ask you how they may be helpful to you and the patient. An excellent way to answer this is by providing them with clear and specific tasks. Examples include requesting help with rides to and from doctor’s appointments, help with errands and household tasks, babysitting and pet care duties, or simply taking you out for a cup of coffee or lunch. It is important to recognize that you cannot be everything to everyone during this time. Decide what your most important values and priorities are, focus your energy there, and let go of the rest (we know this is easier said than done… do it anyway.).
Contact your Psychosocial Team Member: A unique aspect of the medical care provided at UCH is that it includes psychosocial support services to patients and their caregivers as part of the treatment process. The entire team prioritizes the welfare of caregivers as part of the medical treatment and wants you to feel supported in this process. Each patient-caregiver dyad will meet with a psychologist as part of this process and strongly encourages that when in doubt, caregivers reach out to their psychosocial providers for additional support. We have a lot of experience helping patients and caregivers emotionally and mentally through this process and look forward to supporting patients and families through th
is challenging time of their lives.
Published in The Bloodline, August 2015