By Marianne Lyons Delorey, Ph.D.
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” – Rosalynn Carter
In honor of National Family Caregiver Month this November, I want to imagine a world where caregiving is recognized for how hard it really is. In this world, children still play games, even video games, but their video games mimic the goals of caregiving.
In the Game of Care (GoC), we see a world like Minecraft, the most popular video game of all time. In our game, users can create their own world, using raw materials to build houses and tools. At some point after starting the game, the player is assigned a person for them to take care of. We will call this person their client. Having a client instantly makes the resources the player has gathered inadequate. The house is too small, the pantry needs more items, and the health of the player is dealt a blow, sometimes small, sometimes very large.
The extent of each hardship that players experience is randomly generated from 0 to 100, but is largely modeled after real caregiving statistics largely taken from the AARP’s recent study.
- 29% are also supporting children.
- Over 40% provide high-intensity care such as managing injectable medications or equipment for which they are likely not trained.
- 20% report poor health.
- 25% have taken on debt because of caregiving costs.
- 20% cannot afford basic needs like food.
Just like Minecraft, the GoC toggles between creative mode and survival mode.
Creative mode gameplay allows players to figure out how to get enough resources, how to get a cranky person needing care to accept care, and how to get anything else done while caregiving.
Players often find themselves in survival mode. The user needs to avoid angry mobs comprised of the client, medical professionals, and other family members. Players are forced to follow strict instructions about care, arrange transportation, meal preparation, and appointments, all while keeping the client relatively happy. When the person is not happy, game play slows down until the base level of happiness can be reset.
The goal in the Game of Care is to feed, clothe, and otherwise care for a person while not succumbing to hunger, mobs, and falls. Drowning is common. The player wins if their person dies peacefully in their own home and the player has not lost all their health, resources, and sanity.
Extra points are given to those who are caring for someone who is increasingly forgetful, verbally abusive, unable to be left alone for small stretches of time, and those with other obligations. More points are awarded for each extra burden carried: household chores, childcare, paid work, and failing health.
Players can cooperate to win, and the game is significantly easier if two people are providing care for the same person, but somehow it just never seems to work out that way and most users end up in PvP (Player vs. Player) mode. PvP mode with the same caregiver usually looks like a competition to care for the same client and whoever is most vocal about how difficult they have it tends to get more “likes” and therefore more points.
OK, so this game kind of stinks. But the problem is, it is real. Let’s use the month of November to let caregivers know they are seen and to give them a break if possible.
Thank you to all of you providing care. You are the world to your person, even if they can’t tell you themselves.
Marianne Delorey, Ph.D., is the executive director of Colony Retirement Homes. She can be reached at 508-755-0444 or [email protected] and www.colonyretirementhomes.com. Archives of articles from previous issues can be read at www.fiftyplusadvocate.com.
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