Perfect Caregivers Are Not Real
The Walt Disney character Mary Poppins is practically perfect in every way. The film of the same name, based on a series of children’s books, is a lovely fictional story about a hired nanny who meticulously cares for two children. Many admire and respect her, and she has a positive influence on everyone around her.
How wonderful it would be if real-life caregivers could be just like her. But let’s not confuse fiction with reality. Helping to care for the needs of others is hard, imperfect work.
There isn’t anything flawless about it. Caregivers function through trial and error, experience moments of emotional imbalance, often feel indecisive and sleep-deprived, and even slack on personal hygiene because they forget the importance of taking care of themselves.
Society would love to believe that the perfection of Mary Poppins exists in the real world. As with the hunt for the elusive Sasquatch, people look for the metaphorical footprints of a living, breathing Poppins.
Don’t assume that a caregiver’s stiff upper lip instead of tears shows incredible emotional strength. What you are witnessing is probably someone fighting to remain clearheaded to help their patient face a harsh reality or decision while maintaining complicated medical care.
Tears shed in private go unseen, and small bursts of misdirected anger and frustration go unnoticed. Sometimes people don’t want to believe those moments exist. They would rather think that they, too, could be a pillar of strength when faced with a heartbreaking or difficult situation.
The truth is that everyone needs an emotional outlet, and it is perfectly fine to have one.
People also like to find organization among the chaos. Good caregivers excel at this, but notice I said good, not perfect.
There is so much to take on, especially when caring for someone with serious health concerns.
Mary Poppins seems to have a solution for every problem and prides herself on not needing help from anyone. For true-to-life caregivers, that way of thinking can have fatal consequences.
Medications and treatments are a top priority, and getting them right can be a matter of life or death. But caregivers are human, so mistakes can and sometimes do happen. That is why my husband and I shared this responsibility when caring for our son Cullen’s pulmonary hypertension. We felt relieved, not insulted by each other’s help.
Cullen is an adult now, and had a heart and double-lung transplant seven years ago. But he continues to rely on me to double-check the copious amounts of medications that go into his weekly pillbox. Together, we get it right perfectly.
A good caregiver also schedules and attends appointments, knows what questions to ask, productively processes the answers, maintains the living environment, and helps with all aspects of “normal” life responsibilities. The list can feel as bottomless as Mary Poppins’ carpet bag.
But I tell you from personal experience that trying to do it all by yourself can make you look and feel stuck in the role of a sad and haggard version of that fictional nanny.
If people are looking to help, let them find a way to do it. Allow your spouse to lighten your workload however they can. Encourage children to partake in chores. Take a friend up on their offer to run errands or prepare a meal.
Teach your patient the importance of self-advocacy while helping them feel confident that they can rely on you. Keep them in the loop. Talk them through their medical routine, so they know how to do it, too. Inspire them to want to help themselves however they can. Doing this will strengthen their sense of worth and give them confidence when taking care of themselves.
A spoonful of sugar may help the medicine go down, but there will be days when nothing goes down easily.
Some rare diseases don’t have a cure, and some pretty awesome people will lose their lives to horrible illnesses. With that in mind, it’s understandable if you lose the rosy color in your cheeks. Keep hoping for a cure and that your loved one will suddenly defeat their medical odds, but also hope for simple things like days of genuine happiness and contentment.
I doubt that you and your loved one will suddenly erupt into spontaneous fits of song and dance like Mary Poppins and her pal Bert, but maybe you could enjoy a relaxing day porch sitting or taking a leisurely walk through a park. Try inviting a friend or family member over for a visit or treating yourself to a delicious meal and perhaps a movie. Don’t underestimate the power of low-key opportunities — they can bring you great joy.
I hope you will consider my advice and keep things real. You will not find peace in perfection because it is unattainable, but being a good caregiver is both admirable and possible.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.