ARTICLES

Patient or Person? You Decide.

A few months ago, at a True Jewel’s board meeting, a few of us discussed some of the challenges families face when caring for a family member, and in particular, children who have disabilities. One of our main concerns was how to find a balance between allowing a nurse to come into our homes to do their job without relinquishing our rights as a parent or guardian. 

Today, I am addressing homecare for children with one or more disabilities. In honor of full disclosure, I have to say I am neither a professional caregiver nor a parent of a child with a disability, but I have been privileged to have a front row seat in the life of a nurse with over 20 years’ experience in the field, who specializes in children with organ issues. When I met her, I had never been in close proximity to a person with a physical or mental disability and I was uncomfortable and even afraid of getting close to them. Ignorance at its best. As I became friends with this nurse, who some call “super nurse” behind her back, my mind opened. She taught me to see beyond the surface and see the spirit/soul living in that broken body. 

The first time she spoke to me about a patient, she was so animated and happy that I was enthralled. She referred to her as her baby, and each child she comes into contact with, regardless of the time spent with them, becomes her baby. The way she so loving describes the beauty of the children made me want to meet them. Over the years she asked some of the moms if I could come to meet them and they were very accommodating. I learn so much from these beautiful souls who often can only communicate with their eyes. Let me share a few nuggets she taught me and others in her field that will blow your minds.

1. She sees her patients as children first, with childish needs and wants that they just cannot verbalize, and treats them as such. She speaks to them in the same way she speaks to an able-bodied child with all of his/her faculties intact. She expects a response the same way as she would from any other child and—wait for it—SHE GETS ONE!!! Initially when other nurses or even some parents meet and observe her, or she explains that the kids can communicate, they think she is crazy. With time they are able to see for themselves and appreciate her humanity. No one, and I mean that literally, who meets her in her role as a caregiver, walks away from her as the same person they were prior to meeting her. She changes the lives of patients and everyone else who interacts with her.

2. She has conversations with children who cannot speak. I’ve had moments when, after hearing these stories, I wonder if she is creating them from her fertile imagination; but when I meet the children and she speaks to them, I get it: I see the responses, some very subtle and some not so much. It is as if they share a mental connection borne of the understanding that she loves and cares for them; an understanding that she knows they are there waiting for someone to see who they really are, beyond the physical shell.

3. Whenever she enters a patient’s home to give care, she keeps in mind that this is the family’s private domain that they are allowing a stranger to enter, sees it as a privilege and treats that sacred space as such. I keep telling her that she needs to teach other nurses her special skills, as it will make the world of difference for many families.

As I share my experience with you, whether you are a nurse, a person with a family member with a disability, or even if you are neither, I challenge you today to take the time to see these special people—kids and adults—as another person.

Nurses, remember that they are not just a paycheck or a patient number on a docket, but a human being deserving of the same attention, care, and love that you would give your own child.  

To the parents who stand on the sidelines and watch without getting too involved in the care of their child, leaving everything to the nurses, I challenge you to remember that you must pay attention to your child’s needs and not leave everything up to the paid professional. Get involved, get to know what is happening with your child, get to know your child.

To everyone who is like me before I met the “super nurse,” step out of your comfort zone and visit a facility. Spend a few minutes with a child who may not have a supportive family or join an organization like a True Jewel, where you can help to make a difference in one or more lives. If you are unable to do either of these, send a donation, regardless of how small, to an organization like ours that is trying to make a difference.

Two old Jamaican proverbs I learned as a child are “One one coco full basket” (coco is a root vegetable in Jamaica) and “every mickle mek a muckle” both meaning every little bit adds up to a lot. 


*Written by and Courtesy of Board Member Margaret Livermore*

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Signs and symptoms of caregiver stress and burnout

Learning to recognize the signs of caregiver stress and burnout is the first step to dealing with the problem.  

 Common signs and symptoms of caregiver stress

  • Anxiety, depression, irritability
  • Feeling tired and run down
  • Difficulty sleeping
  • Overreacting to minor nuisances
  • New or worsening health problems
  • Trouble concentrating
  • Feeling increasingly resentful
  • Drinking, smoking, or eating more
  • Neglecting responsibilities
  • Cutting back on leisure activities

Common signs and symptoms of caregiver burnout

  • You have much less energy than you used to
  • It seems like you catch every cold or flu that’s going around
  • You’re constantly exhausted, even after sleeping or taking a break
  • You neglect your own needs, either because you’re too busy or you don’t care anymore
  • Your life revolves around caregiving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You’re increasingly impatient and irritable with the person you’re caring for
  • You feel helpless and hopeless

   As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.

    There's a difference between being busy and being productive.  If you're not regularly taking time-off to de-stress and recharge your batteries, you'll end up getting less done in the long run.  After a break, you should feel more energetic and focused, so you'll quickly make up for your relaxation time. 

For more information and to read this article in full, visit Helpguide website.

©Helpguide.org. All rights reserved. Helpguide.org is an ad-free non-profit resource for supporting better mental health and lifestyle choices for adults and children.


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Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. Therefore, it is very important for you to take some time to care for yourselves as individuals....doing the things that you really enjoy. 

For full article, see the National Information Center for Children and Youth with Disabilities (NICHCY) website - click here.

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A TRUE JEWEL

A

T-ime to 
R-each out
U-plift and
E-levate a

J-oyful
E-xceptional group of
W-omen whose
E-xcellent care and
L-ove makes their loved one's lives worth living

Written and Submitted by Board Member Margaret Livermore

 
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