Care Give or Care Take?

What happens when a person who lives with a chronic illness finds him/herself in a situation in which s/he has to care for someone else? This can be quite a balancing act and can follow with many feelings, such as confusion, guilt, ambivalence, exhaustion, anxiety, and even depression. How does a person find him/her self in such a situation and what can s/he do about it to cope as best as possible in the given circumstance? A person can enter such a predicament when s/he has a partner who suddenly develops an illness as well, or a parent who becomes physically or mentally dependent. Other such instances include having a baby, being caught in a natural disaster in which someone else needs immediate care, or having a professional occupation in which it is one's responsibility to care for others (i.e. healthcare professionals). Such circumstances are at times unavoidable, and although they can follow with the range of unpleasant emotions mentioned above, if adequately coped with they can also occasionally be rewarding and beneficial to one's own emotional health.

I am reminded of the standard emergency airplane procedures regarding oxygen masks. The flight attendants recommend that a caregiver place a mask on him/her self prior to placing a mask on the dependent person or child. If the caregiver cannot breathe, s/he is no good to the child or dependent. Similarly, if a person with chronic illness needs to care for someone else, it is imperative that s/he care for him/her self first. This includes getting adequate rest, taking all medications as scheduled, and maintaining emotional health as much as possible. Like most areas of coping when living with illness, this is also easier said than done. It sounds very logical to make one's own care a priority in order to provide the best care to your loved one; however, humans are not always the most logical beings. One is likely to be influenced by powerful emotions. For example, one may feel incredible guilt for hiring a nurse aide to care for his/her elderly parent, rather than caring for the parent him/herself. Another person may experience feelings of inadequacy when she cannot breastfeed her newborn baby because she needs to continue taking medication for her medical condition. Someone else who works in a healthcare setting may desire to leave work a few hours early to get some needed rest, but may experience anxiety about the stability of his/her job and may therefore push through the rest of the work day. This person may then feel ambivalent about his/her responsibility of caring for others at work or even frustrated about it, which may impact the quality of his/her work.

There are countless other examples, but what can be done to help manage the numerous feelings associated with these circumstances? Don't forget that just because someone else may need care and help, does not mean that one should stop asking for help him/her self. There is no beginning and end to the circle of caretaking, and there is no person on earth who does not require care in some form or another. If a person is exhausted from caretaking, s/he may ask a friend or family member to help do some things for him/her in order to give some extra time to recoup. When a person has allowed him/her self to continue to be cared for, s/he can immerse him/her self in the moment of caretaking and allow him/her self to experience what it means when s/he is doing what s/he is doing. For example, if one lets his/her partner feed their newborn at 4am, then when s/he is feeding the baby at 7am perhaps s/he can really allow him/her self to feel the joy of what s/he is engaging in. Or if one made sure not to miss his/her medical treatment before attending to his/her elderly parent, then perhaps s/he can take great pleasure in knowing that when s/he bathes his/her parent s/he is providing a great comfort or service. It is a struggle to be able to get to a place when s/he can experience this peace or joy but when it happens it can be most beautiful. Additionally, it is important to not ignore one's feelings. Feelings of ambivalence, anxiety, frustration, anger, guilt are all perfectly fine to experience, as long as they are acknowledged and addressed so that they are not taken out on oneself or the person being cared for. Although one may feel shame or embarrassment because of these feelings, they are expected feelings, and one should seek out a person to discuss these feelings with, whether it be a close friend or relative, or a mental health professional.

Caretaking as discussed can take on many forms; however, when a chronically ill person needs to care for another chronically ill person, this can also stir up feelings about one's own chronic illness. The person may have to face his/her own issues with dependency, helplessness, and even mortality. What one may see in the person s/he is caring for, s/he may have to acknowledge in him/her self. This can be quite an emotional struggle, and at times may be re-traumatizing, bringing up emotions similar to the one's experienced when the person was first diagnosed with illness or first experienced symptoms. Such feelings may be anger, denial, hopelessness, depression, or avoidance. If such a re-traumatizing experience emerges, it is imperative to seek support whether in the form of psychotherapy or support groups, and it is important to inform loved ones of these feelings and to ask for their help through this difficult time.

The most critical thing to remember is that you are not alone. These confusing feelings are understandable and others who live with chronic illness experience them in such situations as well. Remember, just because people may not talk about certain things or avoid doing so, does not mean they are not feeling these things as well. You can be a successful care giver but do not forget to take care for yourself too.