“Did I Really Just Think That?” Managing Mixed Feelings as a Caregiver
“Did I really just think that?” Thoughts that are followed by this internal critique often are not ones shared with friends, in fear of what others might think.
As a therapist, I find that these thoughts surface in the form of, “This is going to sound horrible to say but…” And guaranteed that what is said next is not only something I have heard before, but is an extremely normal sentiment for someone in the position of being a caregiver for a loved one.
Each year, approximately 44 million Americans serve in a caregiving capacity for a friend or family member with a chronic illness or for those who cannot perform activities of daily living (e.g., hygiene) alone. As a majority of caregivers are employed, adding what can be considered an additional full-time job on top of that can be very overwhelming. A study conducted by the National Alliance for Caregiving and AARP found that caregivers spent an average of 4.3 years providing care.
The physical, emotional, and financial impacts of caregiving are well-documented, however caregivers frequently experience a sense of feeling unseen or unappreciated. If you are a caregiver yourself, you might know that caregiving can be a “thankless” job that you did not apply to and that you got little training for. On one hand, you might feel that caregiving is a meaningful, rewarding experience, an opportunity to spend extended periods of time with those you cherish. On the other hand though, you might feel exhausted, burnt out, and conflicted about negative thoughts directed towards your loved one or the situation at hand. It can be hard to make sense of things when so many emotions tangle together.
So what are some feelings I have heard shared by caregivers? By no means is this an exhaustive list -- as we know that each person’s experience is unique -- but this list represents some of the major themes I have seen over the last 10 years. I wonder if any of these will resonate with you…
Loneliness: Even when you have a big network of friends, caregiving can be an isolating experience. While others may get snippets of what you see day in and day out, they likely will not be present for the hard moments in the middle of the night or for the times you feel most helpless (e.g., when side effects or pain are out of control). Many will ask how the person you are caring for is doing, without thinking to ask about how you are doing. This can really exacerbate how alone you might feel.
Anticipatory grief: Caregiving for someone with a protracted, serious illness is sometimes referred to as “the long goodbye,” for good reason. Even when a loved one is doing relatively well, there can be awareness that the person likely will not be around forever. It can be difficult to balance being with the person in the present with grieving for what life might look like after that person is no longer alive. Anticipatory grief can take the form of intense sadness. You even may notice yourself wanting to pull back from the person in an effort to protect yourself.
Guilt: Guilt can manifest in a number of ways. Some common situations that elicit feelings of guilt are leaving the person you’re caring for to have a break or to do something for yourself, wishing for the person to die or feeling relieved when the person does die, or believing that there was something you could have done differently to prevent the illness or the person’s decline. Remember that you feel guilt when you make a judgment about something you “shouldn’t” have done, thought, or said, without offering yourself grace and compassion for having to make really tough decisions. It is normal for a part of you to wish that your loved one would die; there are times that you wish that both you and they did not have to struggle anymore.
Ambivalence: How could I both love the person fiercely and wish for them to die at the same time? This describes ambivalence. I cannot think of one example of a significant relationship that is entirely positive; instead, there usually are times of closeness and deep love and times where the relationship is challenged. Strong feelings show how much the person means to us, both positive and negative. The opposite of love is considered to be indifference, not hate or resentment, but ambivalence can be a confusing thing to experience.
Resentment, Anger, and Jealousy: “Why me?” “I wish I didn’t have to…” “That person has it so much easier than me.” Caregiving has a tendency of interrupting life plans and hitting “pause” on one’s path forward. You may be in your retirement years and were looking forward to a period of rest and enjoyment. You may be a young adult having to care for a parent, which could mean moving back home, stepping away from a career, or could get in the way of romantic relationships. You may be a parent of your own children, having to give care to a loved one and meet the needs of your children. While you know the ill person is not to blame, it can be hard to not feel angry towards that person for all that has changed in your life and will continue to change going forward. You may feel jealous of friends who seem carefree or jealous of your own, pre-caregiving life.
Anxiety: “What was I supposed to do again?” As caregivers, you are sometimes asked to do things that you would expect a medical provider to oversee: medication management and dispensing medication, assisting with a medical device, providing hands on care, etc. There can be intense fear about making a mistake and doing something to harm your loved one inadvertently. There also can be significant anxiety about upcoming scans, medical procedures, and the person’s future in general terms. “What is going to happen?” An ongoing medical situation can make even the most relaxed person feel out of control, but particularly if you are someone who thrives off of predictability.
Horror, Disgust, and Embarrassment: There are some parts of being a caregiver that are just gross and icky, especially if you have a weak stomach or are prone to feeling squeamish. You may have to clean up blood, vomit, feces, urine, or other bodily liquids. You may witness an event that is traumatic in nature and hard to get out of your mind. You may feel embarrassed for the person or embarrassed for yourself. It can be upsetting to see someone you love go through these experiences, which might make them seem even more vulnerable, fragile or dependent. Oftentimes caregivers remark how they rise to the occasion and do things they never knew they were capable of doing.
In spite of all of the big feelings mentioned above, caregivers will say they “Would do it over again” or “Wouldn’t trade that time for the world,” time and again. Why is that, when there are so many hard things to navigate? Caregiving for someone creates a closeness, a kind of intimacy that is like none other. You are seeing the most raw, real parts of the other person, and they trust you so much that they are willing to have you there with them in those moments that no one else gets to see. The strong feelings of love, gratitude and fulfillment tip the scales in such a way that allow you to wake up and face the enormity of the task at hand each and every day. And in doing so, you enter into a sacred place with your loved one.
The mixed emotions mentioned above can be difficult for one person alone to hold. When the feelings become unmanageable, turn to self-care outlets: seek out a professional for emotional support, caregiver respite (ask a trusted family member or friend to relieve you for a few hours or days so you can have a break), mindfulness, fuel your body with food that makes you feel good and gives you energy, establish a daily routine, exercise… find time that is for YOU and you alone, if only for 15 minutes a day. It’s hard to remind yourself of your own needs when you are so consumed by the needs of the other person, but you can’t give water from an empty well. You must attend to yourself so that you can attend to the needs of others.
References:
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: Washington, DC: AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. Washington, DC: 2008; Family Caregiver Alliance, Family Caregiving and Long-Term Care: A Crucial Issue for America’s Families, Policy Brief. San Francisco, CA: June 2004.
National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
