The Power of Kindness Can Change the World for Caregivers
One of the most inspirational definitions of kindness I’ve ever read comes from Father Lawrence G. Lovasik’s book “The Hidden Power of Kindness“:
“Not only is kindness due to everyone, but a special kindness is due to everyone. Kindness is not kindness unless it is special. Its charm consists in its fitness, its timeliness, and its individual application.
“Kindness adds sweetness to everything. It makes life’s capabilities blossom and fills them with fragrance. Kindness is like divine grace. It bestows on men something that neither self nor nature can give them. What it gives them is something of which they are in need, or something which only another person can give, such as consolation. Besides, the manner in which this is given is a true gift itself, better far than the thing given.
“The secret impulse out of which kindness acts is an instinct that is the noblest part of yourself. It is the most undoubted remnant of the image of God, given to us at the beginning.”
Some of the people who understand the power of kindness are the 53 million caregivers in the United States. Nearly one in five caregivers (19%) provide unpaid care to an adult with health or functional needs, while 26% have difficulty coordinating coverage. These people deserve kindness in return.
One of the principles of Catholic social teaching, a wealth of wisdom from church leaders about building a just society, is the concept of human dignity. Everyone matters, and everyone should be treated with love and respect.
Yet millions of caregivers and patients in the rare disease community (including my family, as my wife and daughter have Huntington’s disease) have astronomical odds and obstacles stacked against them.
In a recent New York Times opinion piece, Kate Washington, a caregiver and the author of the recently published book “Already Toast: Caregiving and Burnout in America,” shared her caregiving challenges. The headline sums up her argument well: “50 Million Americans Are Unpaid Caregivers. We Need Help.”
Washington cares for her husband, who had an aggressive cancer that necessitated a stem-cell transplant in 2016. The transplant triggered a massive infection that robbed him of his eyesight and nearly his life. He remains chronically ill today.
“Even though I had support systems and family to help, and we could afford supplemental care, my husband’s long medical ordeal was almost unbearably stressful,” Washington wrote in her article. “Supporting a catastrophically ill person will never be easy — but in the United States today, it’s far harder than it needs to be. Our system largely abandons those with less privilege than I have to struggle alone caring for those we love most. The result for many is burnout, bankruptcy and profound suffering.”
A system that abandons those with less privilege is not a kind one.
We need political and healthcare leaders to allow their secret impulses — their noblest parts — to emerge, and to figure out how to fix the brokenness. They need to put themselves in the shoes of people who are already “toast” and let kindness reign. And then these leaders may understand what caregivers already know: Right, moral, and kind actions allow life’s capabilities to blossom, filling those around them with fragrance.
In a world that stinks with incivility, anger, violence, and division, it’s fair to say that the world needs the fragrance of kindness to fill more people’s hearts.
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Note: Huntington’s Disease 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Nerys M. Baiges
How courageous! Mr. Briceno, first, blessings to you, your wife and daughter. It is hard when you are a caregiver of a person who lives with a life threatening illness, condition or complications. I raised a daughter, Jullianne, who was born with Achondroplasia. However, due to some medication, and possibly medical negligence on behalf of her doctors, and others, she may have been born with congenital hydrocephalus which had never been shunted. How she is alive is a mystery to me. Everyday, I am expecting a call that she may have passed in her sleep, which is when the pressure in the brain goes up. She lives with her boyfriend and her 3 year old son. In the same token and while her problems and life threatening complications make come primarily from the brain, her son, born with Achondroplasia as well, lives with Restrictive Lung Disease, which is also a life threatening complication for this population. Caring for the two is complicated because between the two of them they have over 20 doctors, therapists and other workers. I quit trying to keep a normal job and I know more about their medical complications than anything else, including my career as a Licensed Marriage and Family Therapist. I lost my marriage of 10 years, had to relocate across the Country because their condition is delicate and complicated. I was not able to spend time with friends and older son in a normal relationship since my daughter's illness more times than often, took precedence over anything else or anyone. Living with children like my Jullianne and my grandson, Julian is like walking on eggshells or riding a wild roller coaster, never knowing when God will take them. Sometimes, I questioned the existence of a kind, loving God. Especially when on a week, the three of us where in three different hospitals at the same time. Life is short but for some unknown reason we find ourselves scraping for money so we can do something fun to get our minds off . I tell you, our system and our world is very much not equipped for families like mine. I have been the sole provider of my daughter's care, making me a case manager, advocate, tutor, supporter and so forth. In 2017, I develop breast cancer and ever since, I have been wondering what is going to happen to her, my grandson, when I die. Talking about burned out, I blame the system and other factors. Have become more conscientious of the fact only rich people have the opportunity to survive this system. I even thought about relocating to Canada so my daughter could have universal healthcare regardless of my income. Today, I would have been better off there or England, where there is universal healthcare and a supplemental health insurance. Instead, we are here in the US struggling in a system not so sympathetic to parents like me and my parents like my daughter where both are Disabled. What will happen, I do not know but it is sad because I worked very hard to get her 0laces and in 2014 something happened to her that changed her life and my life. However, I have learned to accept that life is what it is and that if I die, oh, well. Hopefully, God will be better to them my daughter, Jullianne and grandson, Julian, than he was with me. If I get sick with cancer again, my next step is death with dignity so I am not a burden to them. God Bless You and hang in there, maybe a cure for HD might be under way. In the case of my daughter and grandson, their anatomy is at times an enemy. Amen.
Carlos Briceño
What you shared is an amazing testimony of love. You and your family's suffering is intense, and I salute how well you have done in helping your daughter and her family. I'm so sorry to hear you have dealt with cancer, as that disease is not an easy one to deal with and overcome. As for suffering, here is a video that has helped me to understand why God allows such horrible suffering among people: https://reallifecatholic.com/video/why-does-god-let-us-suffer/. I hope it inspires you to have renewed faith in Him and brings you some peace. I agree that this country does not do well in terms of helping people, like you and your family, when dealing with all the health issues you all have. Please know that your love for your family is an inspiration for me and that you all will be in my prayers. One day at a time. That's all we can do.