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Caregiver Perspective: Times Have Changed

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.

Caregiver expectations

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kim Dolce moderator
    5 days ago

    Oh, Donna, it broke my heart to read the truth about caregiver support, and a sad truth it is.

    You’ve mentioned belonging to a church. I hope that community has been of some help to you with Lynn, and might possibly be there for you someday.

    I think of you often and wonder how you are holding up under the constant demands on your body, mind and spirit. Thank you so much for telling us what your life is like. I hope you find some comfort in the telling.

    Kim

  • Donna Steigleder moderator author
    5 days ago

    Thanks Kim, You are always so supportive and sweet in your comments.

  • Janus Galante moderator
    5 days ago

    Wow Donna,

    once again this issue brought back memories, proving just how true it can be for many who are forced into a caregiving role.

    I was thrilled when I saw a local commercial last night for a hospice house that now offers temporary respite care. (3-7 days) The only thing was it is VERY expensive on a daily basis, leaving me wonder if insurance will pick up a portion of the cost…? (For those that have insurance).

    We are very, very fortunate where we live, to have a wonderful network of caring neighbors. If someone is in need, most everyone will pitch in to help however it is needed. We all realize just how very rare this is, and are extremely thankful.

    Many of us have no children, and as you pointed out, the ones that do have family are nowhere near to be able to help out. Through no fault of their own. We have to help each other.

    It’s a heart wrenching thing to think of the future as a caregiver and wonder…who will care for me when I need it? I encounter, and have encountered, so many who have no friends, no family and are desperately lonely and have been there myself. It’s an awful, dark feeling.

    I think of you and Lynn often and am so glad that you shared this sober reminder with us. Thank you so much Donna! xxxx’s Janus

  • Donna Steigleder moderator author
    5 days ago

    Thanks for your comments, Janus. Unfortunately, insurance does not pay for respite care unless you have long term care insurance. Medicare and regular health insurance coverage both do not consider it medically necessary coverage. If you qualify for Medicaid coverage, and few people do, then you may have limited coverage. In most situations, it’s an out of the pocket expense. In several states, however, some organizations offer caregiver scholarships or waivers to help with the cost. It’s usually not much, but every little bit helps.

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