Today marks three years since my brother passed away. He was truly an incredible presence in my life, an attentive son and grandson, a caring friend to many, and a compassionate uncle to four incredible nephews and nieces. His illness from an early age showed me and my family what it meant to provide caregiving and support him throughout difficult phases and the daily tasks of life. However, he (despite his ongoing needs) would continue to remind us that “you must take care of yourself,” first and foremost in order to show up and provide support for other people. It was just like a professor of mine once said: “the rules are simple: secure your mask, before assisting others.” If it’s instinctual on an airplane or in an emergency setting, why do we struggle with this as it relates to caregiving? Surely it has nothing to do with an equal sense of urgency – or maybe, that is the very root of the problem.
Some caregivers are well equipped, trained, and prepared for the reality of the role; for most, however, it is quite the opposite. Whether officially or unofficially, people often become caregivers for their close family and friends. With this position there comes certain responsibilities and limitations that a lot of new (and seasoned) caregivers realize as they navigate the process. There is also a general lack of education for caregivers about the traps and cycles that one can fall into, which often lead to caregiver burnout, commonly defined as a debilitating psychological condition brought about by unrelieved stress.
So what exactly is caregiver burnout and how does one know when this might be what is happening? Are there any signs that are important to watch for when checking in with family or friends providing caregiving services?
- Often accompanied by a loss of sense of self, overworked caregivers may experience low energy and mood, a general disinterest in once-loved activities, and a poor outlook on life and their circumstances as a whole.
- Self-neglect can start to appear in ways that are unexpected, changes in sleep or eating habits, changes in personal care and attention once shown to appearance and clothing, and frequently missed medical appointments for continued wellbeing.
- Anxiety, panic, worry, and uneasiness may start to overwhelm and follow the caregiver, impacting other areas of their life as they consistently try to “keep their head on a swivel,” for the person they are caring for. This can also look like an inability to focus.
- Shame or guilt, about the inability to solve certain situations or a sense of guilt when showing attention to friends or family apart from the person receiving care and an inability to discuss time apart, taking a break, or the hardships one might be facing.
It can take multiple involved family, friends, medical staff, and more to appropriately care for a person experiencing a severe disability or chronic medical condition, and the responsibilities should not fall into the lap of one caregiver alone. Where the sense of urgency should come in – is with regards to the caregiver’s ability to communicate and set clear boundaries. Asking for help, clarifying tasks/responsibilities, and voicing concerns around one’s ability to provide care is likely within the caregiver’s control.
Caregiving and taking care of oneself is a dance that requires time, practice, and sometimes a little more guidance than we might be used to. With everything in life, there are certain things we may naturally have an ability for and other things feel foreign to us. Taking appropriate care of oneself comes naturally to some, impossible for others, but most importantly.. can be learned by all. In a direct caregiving role here are some important reminders to consider in order to make sure that you are refilling the tank and not running on empty:
- Identify and maintain personal health goals. This may include exercise, dieting, yoga, meditation, or other activities that are meaningful for your physical and mental health.
- Delegate to others. Sometimes others involved in the person’s life want to help but don’t understand how to divide up common daily, weekly, or monthly chores amongst everyone.
- Create healthy boundaries. Review the ways in which you are able to provide help with the person, and clearly identify areas in which you cannot provide support.
- Seek assistance from community resources. Often times there may be services in your area that can provide meals, transportation support, caregiver resources, and more.
- Prioritize your mental health and caregiving journey. It is alright to feel guilty, afraid, and down regarding caregiving, there are trained counselors that can help.
- Check in with yourself. There may come a time when you are no longer able to provide the support you once did, realizing and connecting to further support is key.
- Arrange and structure breaks. Whether this means sharing the responsibilities with a friend or family member or arranging respite care, it’s critical to set up your own reset.
- Try new activities with the person you are caring for. Keep caregiving interesting by making new and exciting memories together, you may find something you both enjoy.
- Explain your situation to those in your life. Work, friends, and family may gain a new understanding of you, given your caregiving responsibilities, and offer more support.
- Clarify the medical conditions involved. When providing caregiving services, it is helpful to understand the person’s condition and what to expect as the illness progresses.
These are just a few of many ways in which a caregiver can take steps to protect themselves and make sure that they are continuing to be effective in their role. It is hard to remember to implement these steps, especially when caring for a loved one. Oftentimes, friends and family members lose sight of their own health and space because they want to help and fear the worst possible outcome if they were to step away and take a break. However, by recognizing these signs and implementing techniques to uphold self-care, the caregiver and person receiving help will be much better for it in the long run.
Seeking additional support from community resources is beneficial as well as it relates to this topic. Just remember that no one person is expected to know it all and have a perfect grasp on every situation. It is important to remind oneself that any and all contributions made to help another person are often welcome, appreciated, and cannot be measured in words alone. What is most important during this process is practicing self-love and understanding, doing what is required in communicating needs, seeking resources, and involving the necessary support to help relieve the burden that can sometimes be experienced during the caregiving process. Do not try to walk the path alone.
Southern California Caregiver Resource Center www.caregivercenter.org
Gary and Mary West PACE www.westpace.org
ElderHelp of San Diego www.elderhelpofsandiego.org
Alzheimer’s San Diego www.alzsd.org
It can be challenging to navigate a role as a caregiver when you are also a family member or involved friend. Often times we are unofficially tasked with the role and if we do not have a good grasp on self-care and self-understanding it can easily become overwhelming. I wrote this article to explain what caregiver burnout looks like, how it might create issues if left unaddressed, and a few helpful tips to prevent and avoid caregiver burnout from escalating. Just remember, caregiving is a journey and it starts with our ability to communicate about the nature of the relationship.