Linda was aware that her mother, Rose, was not getting better. This was Rose’s third emergency visit in a month for shortness of breath. Rose was 86-years-old and had a bad heart valve that triggered congestive heart failure.
After Rose described her symptoms to the physician, Linda prompted her mom to speak up by saying, “We need to talk about this.” The physician picked up on the cue and asked Rose if this situation was hard for her. Rose was eager to share that she no longer had quality of life. Linda was eager to help her mother in the transition to end life, but didn’t know where to begin. Did Linda have a personal philosophy about caregiving?
Family caregiving is a noble, yet humbling experience. You’re at the mercy of those who need more from you, but who often want less. Linda didn’t feel comfortable with making decisions for her mother, but Rose was eager for Linda to help. Your best tool is to use reverse psychology: try not to play it smart. Establish humility at the outset through adopting a “pea-brain” philosophy. Patients expect little from know-nothing caregivers who have more questions than answers.
Playing dumb fools your patient into thinking he or she needs to maintain the upper hand. You become less of a servant and more of a supervisor. Your perceived pea-brain becomes a front to a more meaningful caregiver philosophy. The caregiver’s “P-brain” consists of being proactive, poised and parental. Caregivers who have “P-brains” are surprisingly gifted and less likely to disappoint. A caregiver’s philosophy needs to be geared toward success, not failure.
Incorporate these three aspects of the “P-brain” into your caregiving philosophy:
Being proactive, you can see 10 feet ahead and years down the road. The ability to see Rose struggling with activities of daily living and making medical decisions automatically puts Linda in the caregiver role. Seeing your patient declining leads to believing you can help. You can guide the process without telling your loved one what to do.
People who can tell what other people think are mind readers. Your patient is rarely certain about what he or she wants long-term. Before you can tell what your loved ones want, you need to be able to read their minds ahead of time.
In being proactive, you need to define caregiving before caregiving defines you. Caregiving will drown you until you learn to swim with the sharks, which will attack you from all sides. You have to be thick-skinned to ward off doctors’ orders and patients’ demands. As a caregiver, you need to be self-assured and self-defined through developing poise.
“Steady as she goes” is the art of being poised and a powerful asset for caregiving. Self-assurance tells others, “I’ve got this.” This does not mean you have all the answers. It simply means that you know when and where to ask for help. You begin to recognize being wobbly before collapsing. The following three rules will help you stay poised:
Frankness is a virtue. Being open and honest about your intentions will help with making medical decisions. Linda’s goals need to be consistent with Rose’s wishes. But the choice between merely staying alive and quality of life serves as a reminder that there can only be one best response.
Choosing between wishful thinking and a doable plan is the responsibility of a caregiver. Hope becomes a four-letter word when your patient’s medical condition becomes unmanageable. The next step beyond the hope of your loved one getting better is balancing the good with the bad. Being poised allows you to find the middle ground to viewing the end of life as strictly being bad.
When you give a little, you get a little. When you choose your own battles, you declare what matters to you. This is the art of compromise. An open-minded caregiver has the ability to roll with the punches. Your philosophy must align with creating a win-win situation.
Parents usually set the ground rules and tone of the conversation with their children. It boils down to saying, “Don’t talk to me like this. I’m not your friend, I’m your parent.” Like Linda, caregivers take on the role of parenting their patients. Parents don’t let their children make poor decisions. Similarly, caregivers can’t allow their patients to make poor medical decisions.
The parent-child relationship builds upon co-dependency. Each person has practical and emotional needs. Good communication skills are important in getting what you need out of the relationship. Ironically, getting out of the relationship becomes the ultimate goal for parenting. The “empty nest” must be anticipated as an opportunity for Linda to regain her life.
The best parents teach their children self-sufficiency. Spoiling your children can lead to their feeling helpless and acting whiney. By instilling confidence in your patient, you provide him or her dignity. Self-sufficiency gives patients the strength they need to feel independent.
Your caregiving philosophy needs to align with patient autonomy. Allowing your patients feel as if they are in charge serves their best interests and takes some of the burden off of you.