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Sunday, July 31, 2016

Caring for the Caregiver: The Unsung Hero's of the Healthcare System




In this week’s post, I would like to recognize caregivers. These are the people who provide care for their parents, their spouses, their children, and their neighbors. According to the Family Care Giver Alliance, an estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities. The value of this unpaid labor force is estimated to be at least $306 billion annually, nearly double the combined costs of home health care ($43 billion) and nursing home care ($115 billion). In additional to adults, children are also caregivers. According to the American Society of Caregiving Youth, three in ten child caregivers are ages 8 to 11 (31%), and 38% are ages 12 to 15. The remaining 31% are ages 16 to 18. Child caregivers tend to live in households with lower incomes than do non-caregivers, and they are less likely than non-caregivers to have two-parent households (76% vs. 85%).

Evidence from various studies show that most caregivers are ill-prepared for their role and provide care with little or no support. Today, with medical advances extending lives, shorter hospital stays causing people to go home sicker and weaker, strict guidelines for admission and penalties for readmission's, along with dwindling resources, patients, their caregivers and all members of the healthcare team face enormous amounts of stress when a person is sick and requires ongoing care. 

My husband was my caregiver when I was sick. He did things I never thought I would ask him to do. He stayed up with me when I could not sleep, cooked, cleaned and made sure I took my medicine on time and was safe when I was a patient in the hospital or at the clinic. He kept my records and spoke on my behalf when needed. He was my advocate and for that I owe him so much.

I know many people who are caregivers and each person handles the role in different ways. Some do it quietly because it is who they are. Some need to hire people to care for their aging parents because they live in another State or cannot manage their loved one due to work and family responsibilities. Whatever the circumstances, each person handles the role in their own way. They sacrifice their time, their financial resources and many times their health to be sure their loved one is safe and cared for.

As a healthcare professional, I did not fully appreciate the important role caregivers play until I became a patient. It was then when I realized how important caregivers are and how much work they do to ensure the plan of care is followed, that the transition of care is safe and that each person is loved for who they are. 

I realized that no healthcare professional could care for me the way my husband could. I felt the safest when he was with me. I am sure many patients feel this way even though they do not verbalize their feelings or express their thanks. Each time I had to go to the hospital for chemotherapy or to the clinic for lab work or x-rays, we would see people alone and wondered how do they manage on their own? 

Today’s healthcare professionals have a responsibility to help each caregiver care for their loved one the best they can.  All healthcare professionals need to take the time to listen, to empower, and to provide information caregivers can use to provide the care their loved one needs. All need to remember they do not have the training professionals have but are being asked to do many of the tasks that we do as a result of our training.

Every caregiver should be given the information to know who to call if they have a question, even at 2 am. They should not be left to make decisions they are not trained to make because the office is closed. They need to have the support of the healthcare team 24/7.

When I came home from the hospital after one of my chemo treatments, I was weak and had difficulty walking. My husband had to lift me from the bed to the wheelchair to the toilet or chair as I could not do it myself. One time when moving me, he looked at me and said; "should you have come home like this?"  I looked at him and said "probably not, but I did not want to stay in the hospital another minute." 

What was unfortunate was that the healthcare team that cared for me in the hospital did not pick up on this. No one asked my husband if he needed help when we went home, or recognized that I was so weak that I was a risk for falling and could have used rehabilitation to help me build up my strength to be able to do simple tasks safely. I look back on that time and feel sad that the system was not sensitive to see that one of their patients and their caregiver needed help. We all have to do better. 

On behalf of caregivers, I ask all members of the healthcare team to take a few minutes and consider what a caregiver is going through and consider ways that you can help them care for their loved ones once they are home. Here are some ideas that might help.

  • Call the caregiver to find out how they are doing? Don't assume they are ok. Checking in from time to time allows them to know someone is thinking about them. It also gives them the knowledge to know who they can reach out to when they need help.
  • Suggest the caregiver takes a break. Suggest they ask a family member or friend to visit so they can get their hair cut or go food shopping. Many people don’t want to burden someone else with care giving duties, but many people do want to help but don’t know how. Giving a caregiver permission to ask for help is something a healthcare professional can do. 
  • If they have to work, help them to find assistance in the community or from home care agency. Home care services can be very expensive, so negotiating rates when possible can be a help. Finding resources is a challenge for the most experienced healthcare professional so you can image how hard it is for a caregiver who does not know the system. Help is always appreciated. 
  • Caregivers need to know there is the help available to assist you and ensure your voice as well as the patients voice is heard. Today there are professionals who patients and caregivers can hire to help them with research, finding resources or deciding on a plan of care. These professionals are called Patient or Health Advocates, and they are in place to assist the patient and the caregiver. They are paid for privately, but can be worth their weight in gold for those who have complex medical needs or feel lost in the system. Here is a link to learn more about this service.
  • Encourage caregivers to take time to talk to a friend or family member about the stress you feel as a caregiver. Talking allows you to express your fears and frustrations. Again, many people want to help, but do not know what to do. Having someone to listen can be a gift to a caregiver.
  • Visit the National Alliance for Caregiving. They have some useful information that might help your handle the stress of care giving. Click here to view the website.
  • Caring for the Caregiver: has a number of resources and videos that can help you handle the role of being a caregiver. Click here to access the website.
  • Children today also care for an ill, injured, elderly or physically challenged family members. A good resource to help understand this role is the American Association of Caregiving Youth. To access click here.  
  • NPR Podcast: Kids as caregiver's face unique challenges. To listen click here
In closing, and on behalf of all patients; Thank You for being a caregiver! I hope this post helps you realize the important role you play in our lives and how much we appreciate you.   

If you are a healthcare professional, I hope this post helps you recognize the important role caregivers play in helping YOU do your job and provides ideas on how you can help them in their role. 

If you have experience as a caregiver or as a patient who has benefited from a caregiver, please share your experience in the comment section.

Thank you for reading Nurse Advocate. 

Have a good week!