An adult child cares for a parent who has Alzheimer’s.
A sister cares for a brother diagnosed with terminal cancer.
A parent cares for an adult child living with a chronic mental illness.
A wife cares for a husband who became quadriplegic in an accident.
Such examples highlight the wide variety of caregiving roles average Americans find themselves in today. According to a Pew Research Study, there are 40.4 million unpaid caregivers of adults ages 65 and older in the United States. As the U.S. population ages and medical advances extend people’s lives, the number of caregivers will continue to rise. This increasing caregiving need, coupled with the cultural shift of families living farther from each other, could spell a recipe for a nationwide rise in caregiver burnout. Gone are the days where a village would raise a child or take care of the elderly. Today caregivers often find themselves pressed to get real support from their families and communities. Despite the high prevalence of caregiving in our culture, it is surprising that the mental health field has only recently begun to talk about the significant impact of caregiver stress on overall mental well-being.
If you are a caregiver, statistics and figures may not resonate with you nearly as much as feelings of being overwhelmed, isolated, helpless, resentful, irritable or hopeless. You may be familiar with feeling your life is no longer yours or that you spend all of your day responding to one need after the other. It may seem that all you can do is muster up the energy needed for taking care of your ill loved one, feeling guilty on the days when you have little energy left for the other people you love. You know how draining this role is, but you may sense that nobody else seems to care. Even when others do care, you may feel that they do not understand.
Most caregivers do not regret their caregiving experience. In fact, they often consider it a gift to be able to provide support during their loved one’s most vulnerable moments. Still, the experience can take its toll emotionally, physically and spiritually. In such a demanding situation, what does it mean to practice self-compassion and self-care? Below are some suggestions that are NOT meant to be a prescription or solution to caregiver burnout. Instead, they are ways of turning toward yourself with love and acceptance through this profound journey of caring for another. I write this as a therapist looking back at my own experiences of caregiving for a terminally ill loved one, reviewing the things I wish I had known during that time. Yet, having come out of this experience myself, I cannot help but recognize that journey through caregiving is different for everyone.
1. RECOGNIZE THAT FEELINGS OF HELPLESSNESS ARE OFTEN AT THE HEART OF OUR STRUGGLE TO COPE
There are many situations that bring about feelings of helplessness when you are in caregiving role, such as having to make a healthcare decision that you believe is in your loved one’s best interest, and then having to wait and watch how things unfold. Sometimes you may have to stand by helplessly as another caregiver makes healthcare decisions that you know are not in line with your ill loved one’s wishes. The ultimate form of helplessness can come from the realization that your loved one’s body or mind is struggling and that there is nothing you can do but stand by and watch. Often a caregiver can find him/herself angry at others, the world, their God, themselves, when the primary emotion under the surface is an overwhelming sense of loss of control. As we try to prevent our loved one’s suffering, we are constantly reminded of the very impossibility of this, and in turn get angry at this gap. The “could have” and “should have” thoughts can take over our anxious mind.
In acknowledging our primary emotions as helplessness and fear, we afford ourselves the opportunity to respond in a different way that is in line with self-compassion. This could mean normalizing our emotion (“I’m feeling helpless right now, which makes a lot of sense given the situation”), acceptance (“I’m frustrated because there is nothing I can do right now”) or compassionate reframing (“I feel helpless but look at all that I have been able to do for my loved one today”). In many instances, it is not going to be possible to respond any differently in that moment than with anger and/or frustration, but we can be compassionate towards ourselves about that too. As psychologist John Kabat-Zinn stated at a recent conference, “I invite you to show up to this moment with as much compassion and gentleness towards yourself and others as is available to you at this moment.”
2. KNOW THAT CAREGIVER BURNOUT CAN CREEP UP WITHOUT MUCH NOTICE
It is common to feel that you are constantly trying to outrun your caregiver burnout. “If I just keep going, I’ll be ok – I just need to focus on what I have to do for my loved one.” Yet, it is often the case that the harder we try to escape burnout, the more it disrupts our lives when it finally does make an appearance. Therefore, an important first step is building awareness of the signs of burnout so that they can be addressed earlier. Check in with yourself and ask if you have experienced any of these signs:
• Trouble concentrating
• Feeling increasing resentment toward the person you care for or others involved in the care
• Drinking, smoking, or eating more
• Neglecting responsibilities
• Decrease in activities that used to promote self-care
• Anxiety, irritability, depression
• Feeling fatigued and exhausted all the time
• Trouble sleeping
• Overreacting to little things that you might not have in the past
• New or worsening health problems
3. DEVELOPING SELF-COMPASSION INVOLVES MINUTE-BY-MINUTE, DAY-BY-DAY PRACTICE
What many people fail to realize is that self-compassion is like a muscle that grows with practice over time. It is a learned pattern of responding to feelings of shame and vulnerability in a way that allows us to accept and value ourselves as we are. Dr. Kristen Neff, who is a pioneering researcher of self-compassion, points out that our society often conflates self-compassion with selfishness. Caregivers are often particularly prone to viewing acts of self-compassion as selfish. But as Audre Lord once said, “I came to realize that self-compassion was not a means of self-indulgence. It was a means of survival.” Having compassion for yourself means that you honor your humanness and fallibility as a caregiver. You accept that you will encounter frustrations, that you will make mistakes, bump up against your limitations, and fall short of your ideals. Compassion is a means of survival because you will feel vulnerability and helplessness on an ongoing basis and you will be regularly faced with voices that try to shame you out of acknowledging this pain.
Dr. Neff also points out that self-pity is not the same as self-compassion. Self-pity in the context of caregiving can mean priding ourselves on our selflessness while refusing to ask for help. This can quickly lead us down the path of resentment. Have you ever been regularly hooked by the thought, “I have to do everything for my loved one and nobody appreciates it or cares about me?” In pushing down our own suffering, we can find ourselves consumed in feelings of victimization, which keeps us feeling even more isolated during a time when we most need connection and support of others. Another tendency is to self-indulge in the name of self-compassion. “I deserve this,” we can say to ourselves as we drink that third glass of wine after a long day. And sometimes we may need a glass of wine after a difficult day of caregiving! Yet, when such coping mechanisms become an entrenched pattern, we are not practicing true self-compassion. We are not giving ourselves the permission to allow our emotions to be present; we are only trying to escape or avoid them.
Self-compassion is also not the same self-esteem. You may wonder how this is relevant to caregiving. You may ask “how is it possible for one to develop self-esteem from caregiving?” Self-esteem is developed by comparing of ourselves to others – something we ALL do! A caregiver can say, “Well at least I’m doing a better job of taking care of Mom than my good-for-nothing brother.” While this can make the ego feel good for a little while, it does not help us cope with our own feelings of helplessness, fear, or loss of identity. This type of comparison model often exists as one side of a self-defeating coin. Judging others can quickly turn into, “I’m not doing as much for my loved one as other people do” because we have gotten used to using a comparison model to build our own sense of self-worth.
Being mindful of all of these traps on a day-to-day basis is essential. It is so easy to feel as though we are practicing self-compassion when in fact we are coming from a place of trying to hide from our vulnerability. To see more of Dr. Neff’s research on Self-Compassion, watch her Ted Talk: https://m.youtube.com/watch?v=Qes9HoxfkE0
4. KNOWING WHAT YOU NEED AND ASKING FOR IT ARE TWO DIFFERENT BUT EQUALLY IMPORTANT SKILLS
Often caregivers find that they have been in caregiving roles before and that providing support and selfless comfort to loved ones feels natural. Yet, those who are regularly in this role often find it hardest to articulate and express to others what they themselves need. This may be the result of two factors: difficulty asking yourself what you need because you do not see yourself as a priority, and/or feeling uncomfortable asking for support even when you know what you need.
The first step of identifying what you need is much more difficult than it sounds. It requires being present with your own internal responses to the challenges of caregiving, stopping regularly to ask yourself, “Do I need a break?” or “Is this a task I can realistically do on my own?” Oftentimes caregivers do not even ask themselves these questions because they already judge themselves as being selfish or weak if they cannot handle everything. Therefore, identifying your needs requires that you embrace the idea that you are not selfish or a “bad caregiver” for having needs! In fact, making room for your own needs allows you to be more present as a caregiver!
One way to begin to get in touch with what you may need to take care of yourself is to think about when you were healthiest; what were conditions that supported that? What were you eating? Were you exercising? Did you seek out activities that connected you to others? Now try to identify what past methods of self-care you have stopped because of your caregiving role? What would need to happen to reintroduce even a few of these areas of self-care?
Once your needs are identified, the next step is asserting them. Make a list of safe and caring family members, friends or co-workers whom you could imagine asking for support. Then decide which of these people would be the most (and the least) helpful at addressing the particular needs you identified above. For example, one friend might be more helpful in taking your car to the shop so that you have a moment to breathe during an already difficult day. Another friend might be person you call when you realize it is Saturday night and you REALLY need to get out of the house and have some fun. Both of these types of support can be equally valuable to your emotional wellbeing. Start to challenge your comfort zone by asking for support from the person you most trust. Know that asking for help does not mean having to acknowledge that you are struggling. We often become apologetic when asking for support, saying “I’m sorry to ask for this but I have been having a hard time.” The fact is you should be able to ask others for support whenever you need it – hard time or not! Also, remember that you do not owe others voyeuristic details about your loved one’s condition or your inner struggles simply because you accepted their help.
5. MOST PEOPLE WILL NOT UNDERSTAND THE REALITY OF THE WORK YOU DO TO CARE FOR YOUR LOVED ONE. SERIOUSLY! THEY CAN’T GET IT.
Whether it is waking up in the middle of the night to push IV medications, calculating time schedules for giving pills, cleaning up after your loved one has an accident, straining your back as you work to move your loved one, or listening to their anger at you as you try to explain how you are only trying to help, these experiences cannot necessarily be understood by those who have not gone through it. Even if someone else has gone through it, they cannot understand what it means in the context of YOUR relationship to YOUR loved one.
In having compassion for our own pain we learn to accept that we cannot fully share this pain with those closest to us, but we may also realize that there are others out there who can have some understanding of our experience. Support groups and online communities can provide comfort and connection in the loneliest of times. Psychotherapy can also be a helpful place to express yourself without fear of judgment – to be able to say out loud, for example, that you sometimes want to give up because it feels too hard. Here is a list of helpful links for caregivers to find more information and support: