Family caregivers are the strength-giving members of the hospice care team and are an often-unsung pillar in the United States economy, contributing over thirty-seven billion hours of care and totaling nearly five-hundred billion dollars of unpaid healthcare labor each year. This is one of the most important, most overlooked jobs on the planet. Providing an outstanding and unmatchable level of care and comfort that cancer patients and the terminally ill truly need takes a great deal from the caregiver’s personal and professional lives. Relationships, careers, finances and even spiritual needs are left unattended and unfulfilled in the interest of ensuring that their patient’s needs are fully taken care of first. This constant need to care for others slowly becomes part of the caregiver’s identity.
The Sacrifice of Caregivers
Caregivers usually fall into their roles quickly and with little warning, assuming the tasks of a caregiver without even realizing that they have become just that. In some cases, it takes years before a person who has been acting as a caregiver to realize their sacrifice and the importance in the tasks they perform for others. Over sixty percent of caregivers are also working part- or full-time jobs in addition to their caregiving duties. This can cause an immense strain in the professional careers and lives of the caregiver. These elevated stress levels can cause trouble in the workplace and could result in the caregivers losing their job.
Finances are another aspect of sacrifice for caregivers who need to work at least a part-time job to ensure they can get their bills paid and have enough money to survive. The American Cancer Society states that the median out-of-pocket cost for a caregiver per year is nearly six-thousand dollars. Long-distance caregivers feel the strain in a different way, as travel expenses help to raise that yearly figure to over nine thousand dollars.
The Toll on the Caregiver’s Physical and Emotional Health
The most used term to describe caregiving situations to doctors is “overwhelming.” Being overwhelmed for extended periods of time has a detrimental effect on the entire body, our mental stability, and overall body function. This stress can lead to a negative outlook on life in general, which then directly affects mental and physical health. Caregivers are prone to depression, sickness, anxiety and an overall lower quality of health.
Socially, caregivers lose many friends and miss out on many social activities once they begin caregiving full-time. Because caregivers are needed by their patients, they miss out on work activities and family outings as well. Over time, missing out on everything and being withdrawn from social situations can lead to heavy feelings of loneliness and severe feelings of social isolation.
Rebuilding your Life after Caregiving
After investing so much of your time and life into your patient and ensuring they lived the rest of their days with love and quality care, focusing on yourself, your own grief and personal needs can be a difficult shift to make. Taking care of yourself and putting your own needs first can almost feel like a betrayal to your patient, even after they have passed. This is the time to allow yourself to feel it all and work through the emotions and grief properly for whole healing.
The task of coping with grief and the heavy emotion to find your personal healing is no small effort, although there are many methods to help get yourself back on track. These things can help you to rediscover yourself and honor your loved one.
- Use rituals as a tool to help you work through your grief. These rituals do not have to be public outpourings of religion or anything outrageous or intense. These could be simple acts that bring you to a place where you feel comfortable and calm, able to cherish and remember your loved one. For some this means washing the car each week, taking a special trip to the park with a pet, or having private moments of self-reflection in learning how to meditate. Anything that makes you feel this peace and calm, do it.
- Allow the feelings, ALL the feelings. Grief has no set path and takes a different road to reach each of us. It’s a unique journey for everyone and comes with a range of emotions, from sadness to deep-seeded anger, and everything in between. Your emotions may sneak up on you and feel unexpected. Allow yourself to feel all the feelings and take the time you need to work through each emotion that arises.
- Take breaks from your sadness. Grief sucks the energy and life right out of us if we let it. Instead of letting it, find a hobby or passion, or simply something to do with your time, to help you work through and leave the sadness for certain amounts of time each day, or each week. Take a fishing trip, walk the mall, have lunch and catch up with a friend; anything to give your mind something to focus on, other than grief. Find the joy in the things that once brought smiles to your face.
- Seek out a licensed therapist. Grief is different for every human on the planet. That said, without moving through your grief in a productive and positive way, you will never truly be able to walk away from what is still weighing you down. An expert’s insight and new coping techniques can help you to trudge through the difficult parts you might be stuck on. A therapist can give you the tools you might be lacking to help yourself back to whole.
- Rework your social life. Start fresh! Make new friends! After experiencing such a loss and life change, connection with others is vital. Cultivating positive, meaningful and supportive relationships with others, even those who have experienced this life situation, is intensely healing when on the journey of self-rediscovery after grief. When reestablishing social connections, you will need to be brave and reach out to others. Small steps to have a coffee date, or a quick after-church meeting can help you to begin to re-lay the foundation to friendship.
- Become reestablished with your church. If you have a religious affiliation, now is the perfect time to step back into your church and become a member once more. For most caregivers, these types of events were put on the back burner while they were caring for their patient. Church and church-like organizations can provide the small-setting groups connection you may be seeking.
- Lean on your support system of family, friends or other caregivers. Sharing your journey with trusted others who truly care for your well-being is an immensely positive force while in the bereavement process. Though family members may not be able to directly relate to the emotions you may experience while grieving, their support, and the ability to simple be able to talk to and depend upon people who love you is one of the most important resources you must draw from. You can also find many local groups in your area!
- Get up and get physical! Physical care for yourself is vital and crucial for rediscovering yourself, wants and needs. Invest in your physical health, now knowing just how important good health can be. Create yourself a daily exercise plan, for whatever your safe-exercise level is. Get enough sleep and rest each night, while attempting to set a sleep routine for yourself. The proper sleep and rest were most likely never gotten while caregiving was taking place. Consider learning the art of meditation to help calm and relieve your mind of the incessant thoughts of worry, grief and dread that may keep popping in.
Caregiving is an all-consuming role and one that demands a great deal of life changes to meet the care needs of a terminally ill loved one. Such a long-term dedication to a singular focus naturally leads to a diminishing of focus on one’s own life, but by beginning to work towards healing and realizing that caregiving isn’t the core of your identity, you can begin to live a life rekindled by renewed purpose.
If you have recently lost your patient after caregiving and are struggling to reclaim your own life, reach out to your doctors or medical care team, who can guide you back to your path of you! Nothing is more important in this life than you and you deserve to have the things you want and need in life, just as you willingly gave your patient.
Thank you for being a caregiver. You matter.
Citations:
American Cancer Society
National Institutes of Health and Human Services