Caregiver Perspective: Times Have Changed
Last updated: September 2020
Once upon a time, the world was a different place in America. Sons and daughters grew up and married and lived in or close to the same neighborhoods where their parents, aunts, uncles, and grandparents lived. Neighbors knew neighbors. Couples got together with friends on Saturday night, and children grew up playing in neighborhoods where best friends stayed that way through college.
Communities used to be connected
People had friends who talked to one another face to face and shared confidences, heartaches, and triumphs. Communities knew one another. Although some of them were related, many were not. They all shared connections through conversations and interactions when they met during their walks along the road as they took their dogs out at night or let their children play in the cul-de-sac. Most of the neighborhood knew one another at least by sight because they gathered once or twice a year for a 4th of July picnic, neighborhood yard sales, or a Christmas open house. They made connections, and they didn’t feel alone.
Neighbors were there to help
So, when someone forgot their key and needed to hang out till their husband got home, or their tire went flat, or a tree fell during a storm, neighbors were there to help. When new babies came, and children graduated, and marriages failed, neighbors were there to give a hug. When accidents happened, a heart attack occurred, or tragedy hit, the neighborhood came through.
But not anymore. Times have changed, but not so, the expectations of insurance companies.
Relationships lack deep connection
Now, we don’t usually know our neighbors other than maybe our next-door neighbor or one other. Most neighborhoods don’t have parties. Most don’t come together in support of tragedies. We don’t even have friends now. What we have is cell phones. Instead of calling each other to talk, we text. An emoji, not our voices, share our emotions.
Though we might have 1000 friends on Facebook, we don’t have one we can call to pick us up if our car breaks down. We know lots of people but have no close relationships. Everything is superficial. All our conversations are about the weather and last weekend sport’s event. We make no deep connections with each other, and therefore, we have no feeling of belonging to anything or anyone. We’re just floating on the surface of life.
No backups for the caregivers
Once when we had tragedy and hardship in our lives, we had people around us, we could trust to help us get through the hard times, but we don’t have that anymore. As a caregiver, I know that I have no backup. I’m alone in this situation. I expect that is true for just about every other caregiver because we don’t have layers around us anymore. Our families are scattered. I know that if I needed care, no one could take care of me since my husband is disabled. I'm his caregiver, but there is no one left for me. I'm his layer, but there is no layer for me.
Now, don't think wrong about my children because they are no different from all the rest of the hundreds of American families who are just trying to survive. They must work a job to keep a house to take care of their own families and to deal with their daily struggles. There is not one of them who has enough liquid income to be able to quit work to stay home to be a caregiver if I needed one. There's not one of them who has any extra room for me at their homes or who could move their entire families into this house. None of them are independently wealthy.
However, our healthcare system currently requires families to take care of their own. They don't consider their circumstances, their training, their responsibilities, or abilities. Suddenly one day, a man has a heart attack and his 65-year-old wife who hates hospitals, and all things medical is expected to be his nurse. The doctor tells this poor, overwhelmed woman that her husband has diabetes and needs help taking shots due to a partial stroke he had in addition to his heart attack. She needs to give him the injection daily and check his sugar before each meal. They give her literature on blood testing, giving shots, signs of problems, blood testing, and more. She goes home numb and afraid sure she will cause her husband to become sick again. It’s too much to ask of her.
It's either sink or swim
Our healthcare system expects too much of caregivers. It takes people still in shock, reeling from the trauma of a medical event and sets these high expectations of performance on them. Usually, with 1-2 training sessions and no additional background, they are sent home to mimic the role of a nurse. They fear making a mistake. Guilt crowds their hearts because they don't want to be in this position. Knowing in their hearts that they are not competent, they are afraid to commit to performing the duties requested but even more terrified to say no and look like they don't care. They can't win, but they also don't think they have a choice. They've been told they WILL be doing this. So, it’s either sink or swim.
It's no wonder, so many caregivers die before the person receiving the care they provide dies. It’s self-preservation or just plain exhaustion.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: