Navigating the Burnout, Guilt and Heartbreak of Caregiving
While we all experience periods of adversity and unexpected setbacks in the course of life, one hopes these struggles are temporary and passing, more often than not. But what if problems are longer-term, chronic or progressive? How do we support loved ones who face a terminal illness or a degenerative disease; and more specifically, how do we do so while maintaining our own mental health?
In my clinical practice, I am currently working with several clients who have become family caregivers for parents with Alzheimer’s disease or another type of dementia. These clients have come to therapy to support their own mental health, while they support the health and wellbeing of their loved one. They have taken this step with great wisdom and insight, as caregiving of this sort requires immense emotional, physical and financial output that can be incredibly taxing. Further, for these women, the caregiver role has been undertaken in addition to professional responsibilities, caring for children of their own, nurturing other relationships and friendships, and (attempting to!) attend to their own self-care. It is wholly unsurprising that many of these women are experiencing high stress, and even periods of anxiety and depression at times.
In our therapeutic work together, there are a few key concepts of caregiving that I teach and continuously circle back to with each client, in an effort to validate their experience, increase insight around conflicting emotions they might experience, and support them in avoiding caregiver burnout:
Self Care is Paramount AND Guilt is Highly Likely
The only way to prevent and cure caregiver burnout is through self-care. Carving out time to socialize with friends and family, caring for your own medical or personal needs, attending to life and work responsibilities, and finding time for simple relaxation will help minimize stress levels when caregiver responsibilities become overwhelming.
Of course, prioritizing self-care can feel extremely challenging when you already feel overburdened by responsibility. And it is very common for family caregivers to experience feelings of guilt and shame for not dedicating all of their attention or resources to their loved one, whenever possible. Likewise, seeking outside support or delegating responsibilities to others, (for example, hiring in-home respite care or transitioning to an assisted living facility) can also be guilt-ridden decisions for caregivers, as oftentimes family caregivers believe they must meet all the needs of their loved one personally. While these emotions are borne from good intentions, they are unjustified, and ultimately, counter-productive. Critical self-talk, (be on the lookout for Should Statements!), that induce feelings of guilt and shame are detrimental to your own mental health, and will jeopardize the endurance you will need to care for your loved one longer-term.
Understanding this inherent conflict between attending to your own self-care needs, while also wanting to be ‘present’ for your loved one at all times, in all ways, is deeply important to navigating the challenges of being a family caregiver.
Anticipatory Grief Brings a Multitude of Feelings
Caring for a parent or loved one as they progress through a terminal illness or experience the degenerative effects of dementia will undoubtedly elicit a complex set of emotions. While we might vaguely recognize some of these emotions as being related to grief, we do not often explicitly discuss the various kinds of loss that occur even before a loved one has passed. In fact, speaking of grief and loss while a loved one is alive may feel wrong or hurtful to some family members, and thus, the knot in your heart or lump in your throat may become hidden inside like a shameful secret.
Anticipatory grief is different from conventional grief because we must confront many of the same thoughts and feelings that occur after a loved one has passed, but we have not yet experienced the actual loss. We are not able to fully process the difficult emotions that accompany death, nor are we able to begin healing and rebuilding our life. It can often feel that we are stuck in perpetual mourning - and for caregivers of those with terminal or degenerative illnesses, this mourning process can last for many, many years.
Certainly, this suspended state of grief can be painful to endure. As a loved one declines over time - losing aspects of their independence, and losing physical, functional and cognitive abilities - it can be heartbreaking to witness. Family caregivers may also feel frustrated and angered at times by their inability to maintain their loved one’s quality of life in the face of a progressive illness, despite exceptional efforts and care. Anticipatory grief can also feel confusing and embarrassing to caregivers, as there may be moments of wishing for an end - hoping for the relief and release that death may bring,
Becoming a family caregiver for a parent or loved one can be an incredibly rewarding, gratifying, and certainly, loving role. However, the long goodbye of a terminal illness or degenerative disease is unquestionably difficult in a multitude of emotional and practical ways. The topics discussed here are just a few that are common to family caregivers, and certainly there are many others to explore along this journey. Please reach out to Our Wise Minds Psychotherapy if you are facing similar challenges - we would be honored to support you, while you support your loved one.