There is no question in my mind that mom feels trapped. Today, she was told by her right-hand caregiver that she would have to leave early on Monday to go with her husband for a doctor’s appointment. Mom understood that she needed to be there for her man but did not know who the agency would send in her place. If it were someone she did not know very well, she would have to change her dentist appointment to another day. It all worked out fine—a known caregiver would substitute, and mom did not have to change her plans for her dental work. But that does not mean it wasn’t a hassle to arrange. Or a source of additional stress.
We hear much about the caregiver needing to take care of him/herself. But we do not hear much about how difficult that can be. Mom looks forward to her brief time ‘out’ and is disappointed – and frustrated – when it does not come to pass for whatever reason. Everyone needs a break. Even if it’s to go to the dentist.
Everyone needs a break. Dad does, too. And sometimes that is overlooked. Dad, the patient, client, victim, needs a break from mom, too. He needs time away from her, too. He needs to get out, away from the house, and have new experiences and sights.
Both are trapped in their environment as time marches on. Role captivity works in both cases and pulls in both directions. Neither seems to be able to escape when they want to. Mom can’t escape her role as primary caregiver, nor the changes dementia has fraught to their lives. Dad cannot escape from dementia and its effects, either.
When I think of role captivity, I think of the movie Groundhog Day (Ramis, 1993) where Bill Murray portrays Phil Connors, a weather reporter, who reluctantly returns to cover the news story of Punxsutawney Phil (alias, the groundhog) and his emergence for the third year in a row. Phil Connors is sarcastic, short-tempered, and just generally rude. For whatever reason, he becomes locked in a time warp that continually circles him back to start the February 2nd, Groundhog Day, over and over and over again. At this point, he is experiencing role captivity at its worst.
Everyone has experienced some sense of déjà vu about repetitious events—did I turn off the stove? Lock the door? But role captivity involves the continual gerbil-on-the-wheel effect of not making progress or headway in what the captive feels needs to or should be done, or in what he/she wants to do. It is often a no-way-out immersion where one can’t seem to keep one’s head above water. Role captivity is associated with an increased perception of caregiver burden. Burden is determined by both the patient’s characteristics and the characteristics of the caregiver. A caregiver who perceives positive effects of caregiving such as a sense of satisfaction, accomplishment, and improved well-being is said to have low role captivity (Tretteteig et al, 2017). Those caregivers experiencing lower subjective burden and role captivity practice more self-care and health-promoting behaviors (Raina et al, 2004).
Enter Phil Connor’s response repertoire. At first, Phil (Bill Murray) realizes he is reliving the same day over and over and responds in the same way each time. Once he learns he is trapped in repeating the day with the same events happening regardless of his response, he changes tactics. He states, “It’s like yesterday never happened” and “What if there is n
o tomorrow? There wasn’t one today”. He is depressed, even suicidal. But then he tries to manipulate the environment by doing and saying what he thinks will get the responses he desires. He becomes more social, helps others, and talks with more townsfolk. He decides to better himself by taking piano lessons and learning new skills such as ice carving. He starts to show compassion and honesty. In fact, his romantic interest marvels that she could “start a day with one expectation and (it) turns out to be something completely different”. How do we get from feeling as if we are a victim of lousy circumstances that cannot be changed to being hopeful and positive about our challenging, but rewarding, situation?
Respite care might be part of the answer. Day care centers give us time to do the things we feel need to be done or want to do. One study even showed that caregiver burden is decreased when relatives visited the IWD more frequently (Zarit et al, 1980). We need time to take care of ourselves so we are not consumed by the caregiver role; a way to keep our identity intact. Nelson Mandela once said, “For to be free is not merely to cast off one’s chains, but to live in a way that respects and enhances the freedom of others.” Aren’t we doing this in the art of caregiving? What could be more worthwhile?
Sources:
Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, Walter S, Wood E. Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 2004;4:1-13
Ramis H, director. Groundhog Day. Columbia Pictures, 1993.
Tretterteig S, Vatne S, Mork Rokstad A. The influence of day care centres designed for people with dementia on family caregivers – a qualitative study. BMC Geriatrics, 2017;17:5.
Zarit S, Reever K, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 1980: 20(6):649-55.
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