Finding Peace Amid The Guilt: Support for Hospice Family Caregivers
Hospice journeys often bring waves of emotions - sadness, fear, anxiety, and even profound guilt are often felt simultaneously by families on this journey. Caregivers and close relatives may feel guilty over aspects of how you are caring for a terminally ill loved one, regret over past actions, or even feel guilty for how they are processing their personal feelings of grief during the hospice process.
Perhaps you feel guilty over not visiting, calling, or spending enough time with your loved one before their illness struck. You may feel guilty about things that have been said (or left unsaid) in the past, or emotional disconnection you may have experienced over the years. Or maybe you find yourself dwelling on missed opportunities, broken promises or life choices that altered closeness. Or maybe you are being harsh with yourself over perceived (or even real) failures as spouse, child, sibling, or grandchild.
Caregiving can take an emotional toll, with physical and mental demands placing their own burdens upon you and burdensome duties taking priority over quality time with your other loved ones and day-to-day life obligations. Adult children caring for elderly parents in hospice often report feelings of role reversal discomfort when caring for their parent in hospice, and may hospice patients may find themselves resisting the care efforts of their adult children.
Guilt can become an overwhelming force that steals away precious moments with loved ones, rendering you incapable of fully being present for them. While feelings of regret or remorse may be inevitable, here are some strategies for processing it so you can become fully present again:
Tell Your Support System
Guilt can often build when left unsaid, so share the struggles you are having with close friends, family members, counselors, or hospice social workers within your support circle. Opening up about these challenges helps put them in perspective, and candid conversations with people who aren’t as deeply immersed in the situation may help open your eyes to a different way of looking at things.
Free Writing
Expressing guilt through words can be immensely therapeutic. Try journaling or writing letters directly to the guilt itself without sending them; let your stream of consciousness reveal all its guilty thoughts and their particular causes.
Or just sit down and write anything that comes to mind for the next 10-15 minutes, no matter how disjointed or irrational your thoughts may seem in the moment. Don’t edit- just get it all out of your head and down onto the paper. You don’t even have to read it afterward. Sometimes just releasing the words and their associated emotions creates enough space that you can break the cycle of negative emotions.
Are You Being Reasonable?
A key source of caregiver guilt stems from unrealistically high expectations about how you "should" have behaved or responded in the past. By approaching each situation with empathy and perspective, self-forgiveness becomes easier - you did what was best with wisdom and resources available at that moment in time. Also be sure to consciously forgive any actions, words, or shortcomings from loved ones that might elicit guilt from you both. We all act in less-than-steller ways from time to time.
This is not about gaslighting yourself, however. If someone did you wrong, you don’t have to pretend that it didn’t happen. But if your loved one is unable to fully address the situation with you, then you may need to set it aside during your hospice caregiving role.
Focus on the Present
Although easier said than done, deliberately anchoring your energy in the present and appreciating every remaining moment together is vitally important. Create tangible new memories through laughter, activities, or discussions allows guilt to fade away out of focus.
Counseling for Perspective and Support
Hospice services may include grief support groups, social workers, and spiritual care services designed to promote acceptance and the expression of complex emotions. These providers have been trained in a variety of methods to help people process guilt, release pent-up emotions, and learn to communicate better with their loved ones.
Develop New Experiences Together
One way to reduce feelings of guilt is through creating new shared positive experiences together that override past shortcomings or disappointments. Talk with the hospice team about legacy-making ideas like recording life story interviews or creating memory books together, as well as other memorable experiences that could be created to honor your relationship.
Confronting feelings of guilt can be an integral part of hospice for many families, even when emotions can feel overwhelming. By becoming more self-aware and actively working through it, however, you can refocus your energy on what's truly important: cherishing time spent alongside a terminally ill loved one.
By seeking healthy outlets, reframing perspectives, and discovering positive ways to express affection, guilt no longer has to remain a dark cloud over your head. Instead, your goal should be achieving inner peace so that you may live fully in the present and create as many good shared memories together as possible.