When a loved one is diagnosed with a debilitating or terminal illness, it can be gut-wrenching and stressful. However, coping with the emotional and psychological impact of such devastating news is only a piece of the experience. The challenges associated with a loved one’s diagnosis grow in both intensity and complexity when we assume the role of informal caregivers.
As caregivers, we are not only responsible for getting ourselves through this difficult time, but may also have to support our loved ones in innumerable ways. For example, we may fully absorb responsibilities that were previously shared, such as cooking, cleaning, doing laundry, buying groceries, feeding pets, or paying bills. We also may need to provide assistance with personal care in the face of a loved one’s declining functional status. This may include assisting with toileting, showering, eating, and moving, managing their disease symptoms, treatment regime, and pain, and coping with their changing behaviors and fluctuating moods (Fletcher et al., 2012).
As caregivers, the considerable shifts in our roles and responsibilities can profoundly affect both our wellbeing and our relationship with the person we’re caring for. In some situations, caregivers and loved ones report reduced intimacy and increased discord (Northouse, Katapodi, Song, Zhang, & Mood, 2010). If you’re in a caregiving role, you might also begin to feel burned-out, trapped, or like you have no one to turn to when you’re feeling low (Fletcher et al., 2012).
As caregivers, it is important to remind ourselves that this drastic shift in roles and responsibilities is an extreme adjustment not only for us, but for those we’re caring for. Loss of independence and increasing reliance on others, especially for things such as activities of daily living, can be very distressing for people with debilitating conditions. This switch can markedly impact our loved one’s sense of self, feelings of self-worth and fulfillment, and overall well being.
In sum, the experience of caring for a loved one with a terminal or debilitating diagnosis can can be profound. It can also affect the emotional, psychological, physical, and spiritual well-being of all involved. While caregiving can often nurture our feelings of selfless fulfilment, these feelings can become intricately entangled with the heavy, grievous emotions we experience about our loved one’s diagnosis and the dramatic changes taking place.
Here are some steps you can take to ease the intensive stress and emotional roller coaster that comes with caring for a loved one who is terminally ill or has a life-limiting condition.
- Set boundaries -Many caregivers find it difficult to prioritize their own needs when caring for a loved one. However, attending to your practical, emotional and spiritual well being is not only essential for your health, it will also help sustain you in your role as a caregiver. Keep your dentist appointments, shop for groceries, got to the dry cleaners and have the care services when needed — these things are not only important to your ability to function day to day, but provide breaks from caregiving that can help you manage stress and fatigue.
- Be intentional in caregiving – Practicing the art of being present while caring for your loved one can bring about increased feelings of fulfillment and purpose as a caregiver, as well as strengthen the bond between you. You might recite a statement of gratitude daily to remind you of the precious gift you are giving to your loved one. You might also practice being in touch with your feelings and the “here and now” experience of caregiving. When possible, engaging in meaningful activities unrelated to caregiving can also bring a deep sense of fulfillment and satisfaction to both of you.
- Reach out for hands-on support – Tapping into your support network or connecting with a local organization that offers respite services for caregivers can help ease the emotional and physical toll of caregiving. Allowing yourself to accept help from a trusted friend, family member, or skilled professional is okay! This support can enhance your capacity for being a present and empathic caregiver.
- Take time for yourself – Setting aside some time to do things you enjoy or bring life meaning is important to maintaining balance. Spending time with friends, working off steam at the gym, or watching a much-loved movie can reinvigorate your spirit, relieve stress and facilitate a sense of peace.
- Create space for your emotional and mental wellness – Seeking out support from a mental health professional during this difficult period can help you to sort through the wide array of feelings, thoughts, and concerns you may be experiencing. Scheduling an appointment to independently meet with a therapist or enrolling in a caregiver support group can provide a vital outlet for processing your feelings and thoughts about caregiving, grief, and loss.
The Viva Center offers a wide array of resources for caregivers, and several of our clinicians see clients and loved ones coping with serious illness and its impact. All prospective clients receive a free, in-person consultation so we can learn more about you and your needs. In addition, you can find free mental health resources at The Resilient Brain Project that can benefit you at any time of year.
Fletcher, B. S., Miaskowski, C., Given, B., & Schumacher, K. (2012). The Cancer Family Caregiving Experience: An Updated and Expanded Conceptual Model. European Journal of Oncology Nursing, 16(4), 387-398. doi:10.1016/j.ejon.2011.09.001
Northouse, L. L., Katapodi, M., Song, L., Zhang, L., & Mood, D. W. (2010). Interventions with Family Caregivers of Cancer Patients: Meta- Analysis of Randomized Trials. CA: A Cancer Journal for Clinicians, 60(5), 317-339. doi:10.3322/caac.20081.