29 Secrets of Being a Caregiver

8k
8k

Caregiving can be a complicated job. Whether you’re a loved one or a medical professional, the experience is often exhausting and frustrating. But it can also be joyful and deeply rewarding.

The Mighty wanted to hear about the intricacies of being a caregiver from the people who do it every day. So we reached out to The Caregiver Space, a community of past, present and future caregivers. The group asked its readers on Facebook to share one secret about being a caregiver.

Here’s what we learned:

1. “Take time to do something nice for yourself, even if it’s something simple. A hot bath, a long walk… do whatever replenishes you. Don’t let your well run dry. You can’t be an efficient caregiver if you’re mentally and emotionally drained all the time. Learn to keep your well full with good things. It helps you deal with the ups and downs of caregiving.” — Marian Mengedoht

caregiver1 copy

2. “Seek help early for both yourself and the one you are caring for.” — Lorne Sobczyk

3. “It’s OK to get upset. Do not take abuse from the patient you are caring for. It’s important to understand your patient may be having a difficult time with a disability or disease, but no one has the right to verbally or physically abuse you. When this happens, seek help and talk with the patient’s doctors.” — Jacquie Harrington

caregiver2 copy

4. “Learning to be flexible and developing the ability to find the positive calm place within yourself even during a crisis has been so helpful. There are joyful moments everywhere if you look for them.” — Patricia Vreeland

5. “Ask for help when you need it. Don’t expect others to read your mind.”  — Sally Merryman

6. “Rest when you can. I have gotten really good at what I call ‘battle naps.’ Five to 15 minutes of sleep here or there will leave you feeling better since it is usually the night watch that leaves you worn out.” — Gregg McFarlan

caregiver3 copy

7. “When I get down physically, mentally and emotionally I look at my mother and see the trust and love in her eyes. In that second, I know why I do what I do.” — Brenda Simpson

8. “There will come a time when your loved one will be gone, and you will find comfort in the fact that you were their caregiver.”Karen Coetzer

caregiver4 copy

9. “Keep a sense of humor. It will be dark sometimes, but it’s still humor and will help alleviate stress.” — Cheryl Averso

10. “Stick with a routine and understand that when your loved one gives you a hard time they may just be frustrated due to loss of control. Carry on because deep down they know you won’t leave them.” — Erika Adler

11. “Even on the worst days, I know it’s worth it. And I am a better person because of it.” Raeschl Dabney

caregiver5 copy

12. “Get out and do something for yourself occasionally, whether it’s lunch with a friend, a pedicure or whatever. Join a support group, even one that’s online for advice and so you know you are not alone.” — Rebecca Grafton Grove

13. “It can be lonely and isolating.” — Laura Lynn Cowan

14. “You will discover a strength you never knew existed. Somehow you will summon the strength to love and care even when you don’t have the strength to brush your own teeth.” — Paula Wychopen

caregiver6 copy

15. “It [can allow] you to reconnect with your loved one in an unforgettable and deeply loving way.” — Cheryl Mann

16. “Take every opportunity to say ‘I love you.’ It will make you both feel better.” — Carol Masterson

17. “Compassion is a must. I care for [my patients] the way I want someone to care for my parents one day.” — Dawn Dusing

caregiver7 copy (1)

18. “Always keep the person’s dignity priority number one, and everything you do or the decisions you make will be correct.” — Jerene Tussey

19. “The simplest thing can change a moment. Do a silly dance, blow some bubbles or point out the beauty in something.” — Krysta Malyniak

20. “I’m a caregiver for my adult son. I’m scared all the time about the future. The wait-list for group homes is long, and I’m scared to admit I look forward to the day we get our spot for him because I think people will judge me as a bad mother. I want him in a group home and happy knowing it’s OK to live somewhere else and that his mom and dad will be OK with him living somewhere else.” — Sondra Learn

caregiver8 copy

21. “Make yourself known as the caregiver when interacting with any medical professionals. Politely require them to communicate with you. They may know medicine, but you know your loved one. Make friends with nurses and office workers. They can become your allies.” — Jackie McDaniels

22. “You know what’s best for you and your loved one — don’t let anyone else tell you any different. Love them regardless.” — Traci Stroud

caregiver9 copy

23. “It’s a great honor and privilege.” — Russ Howard Sr.

24. “Caregiving is a constant learning experience. Most of us are untrained and learning as we go. Remain positive and stay on your path.” — Vivian Frazier

caregiver10 copy

25. “It’s OK to cry.” — Cynthia S. Simon

26. “Don’t ever turn down help, whether it’s mowing the lawn, doing laundry or picking up milk at the store. People will offer, so take them up on it.” — Susan Munz Marengo

27. “Do whatever you can to make the person happy. You will be so glad you did later on.” — Martha Rice

caregiver12 copy

28. “Be humble, respectful and patient. Have empathy and lots of it.” — Julianne Smith

29. “Trust in yourself and your gut feelings about yourself and your patient. Try to be tolerant and if you find it’s difficult, walk away for a few moments. Never give up on yourself. And most of all, love yourself. You are awesome.” — Madonna Nicolai

caregiver11 copy

For more resources for caregivers or to connect with other caregivers, visit The Caregiver Space.

*Some responses have been shortened and edited.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

8k
8k
TOPICS
Listicle,
JOIN THE CONVERSATION

RELATED VIDEOS

13 Things Hard for Me to Admit as a Special Needs Parent

9k
9k

It’s sometimes hard to be honest as a special needs parent when I’m trying every day to be strong for my children and those around me. Whether you’re close to a special needs family or not, here are a few things hard for me to admit but that I’d like you to know.

1. Sometimes I feel alone.

As a special needs parent, isolation is real. Sometimes when things get difficult, many “friends” disappear because the situation is “too hard to watch.” As nice as this sounds, I know I’m being “politely” avoided and removed from the lives of these so-called friends.

As a special needs parent, I’m in a unique situation. I know others will not intimately know the details of our child’s diagnosis or abilities, and this can lead to feelings of isolation. This is only exaggerated by other people’s unwillingness to learn. I need true friends who are willing to stick it out when times are tough.

2. I feel left out.

I appreciate hearing about your fun overnight stay or family vacation, but that is not a reality for my family. But don’t mistake our lack of outings with the lack of desire to have them. It’s just difficult to ask for the required help, so we often find ourselves overlooked. It’s assumed we “have too much on our plate.” Let us decide what is too much for us. We are still capable and have the desire to help others, go out with friends or be included in events/outings.

3. Money is always an issue.

Many special needs families struggle to pay for the rotating door of medical expenses and/or special equipment that is sometimes needed. Neither is cheap, and getting assistance can be difficult.

4. I take your opinions into consideration, but I know best.

Only time and effort can bring real solutions, and I have logged in plenty of both. Sometimes it’s better to keep the opinions to a minimum and just offer a helping hand.

5. I’d love you to teach your children tolerance.

While some special needs individuals do not have the ability to demand tolerance, their loved ones do. If your child teases or bullies our children, expect to hear from me. I’m used to fighting for my children and will not hesitate to speak up.

6. I hate when you assume our child will “grow out of it.” So stop asking.

This is by far the most annoying question I’m asked as a special needs parent. We heard this question by nearly everyone when our son was diagnosed. These well-meaning people would ask and seemed to wait tentatively for validation. So for you to be OK with the diagnosis, it has to be short-term? No matter the term of the diagnosis, families like mine are dealing with the here and now.

7. I’m tired.

A great deal of diagnoses carry the fine print of sleep deprivation. Be considerate when discussing your poor night of sleep. I’m on years of sleep deprivation and, as a result, often feel the physical and mental repercussions.

8. I don’t have all the answers.

I’m still learning and every day brings new challenges. I research and ask as many questions as I can, but usually a new question follows a solution. Be patient with me and my family. We’re doing the best we can.

9. I’m well aware of our child’s challenges…

…and don’t appreciate you pointing them out. 

10. I need support.

I may not always say it, but I need it, and if it sounds like I need help I probably do. Offer to do the “hard work.” These tasks may require you to feel uncomfortable or lose sleep, but they are the things I will not forget. Sometimes it feels like I live in a constant state of chaos — help me get away. No one can withstand this type of existence without feeling a little frayed. Stepping in for any amount of time makes a world of difference.

11. I notice when you stop asking about my children.

My child may not be on the honor roll or in sports like “typical” kids, but he still has accomplishments. Acknowledge the effort my child makes to do what most typical children take for granted. I guarantee he’s worked on these tasks for a very long time.

12. I need to vent.

I am thankful for the opportunity to raise this special child, but it’s a stressful job. It can be “depressing” for you to hear, but this is my reality. Please allow me a place to talk honestly and unload. And I want to do the same for you.

13. Going out in public is hard.

I’m on guard in public places. I’m aware of whispers and stares. I also know I have the right to public space. I do take others into consideration when situations become difficult, so please do the same.

And I do want you to know…

Special needs parenting changes the heart and mind. Parents like me can be the most empathic and patient people you will encounter. And although I often face a great deal of difficulty with a smile, I’m sometimes hurting somewhere inside. The guilt of not knowing or doing enough is constant. I often feel like things will never get better and yearn for friendships that will withstand.

But know I only wish to change the world for the better for children like mine. I want others to see the true gift of a child with special needs.

A version of this post originally appeared on CrossRoadTrippers.

9k
9k
TOPICS
, Contributor list
JOIN THE CONVERSATION

5 Ways I React to People Who Stare Instead of Saying They're Wrong

3k
3k

We knew after our 20-week ultrasound our soon-to-be daughter would have many health issues, but we pressed on.

There were many questions of if there was cleft palate or cleft lip, as well as if her eyes would be wider or nose flatter. We knew to prepare ourselves ahead of time for the questions and stares. We stared ourselves, getting familiar with the intricately woven fabric of her face. Her slightly slanted eyes were wider than most. Her small nose was open on one side due to her cleft palate. She has a wider set chin and neck.

But she was ours and she’s perfect, and we’d tell the world about her and we would be fearless in sharing and teaching others about our daughter.

It was when I took her to our local hospital for labs with her home health nurse that the stares began. I distinctly remember a couple stepping in line in front of us at the admissions desk, acting as if we were invisible, which was hard to believe considering they looked right at us. As we left the admissions area, the same couple walked past my daughter in her stroller, decked out with a home ventilator, oxygen saturation monitor and numerous other pieces of equipment that made her life at home possible. They gave us a side-long disapproving glance.

I was shocked. I didn’t know what to say or think, but on the inside, I was fuming. Didn’t this couple know all people are created unique and different? That society has placed way too much emphasis on what is considered “normal” by simply judging one’s outward appearance?

I didn’t know what to say that day. And the truth is, I’m still not exactly sure what to say.

What I do know is I’m still struggling myself with what to say to others with disabilities. What I do know is on that particular day, my mama-bear instinct came out and I wanted to lecture this couple on appreciating the beauty in each and every person, regardless of their disability or uncommon features. I wanted to set them straight and tell them their behavior was unacceptable. I wanted to yell at the world for thinking there’s a right way and a wrong way as to how people should look. That it actually is OK to have a cleft lip that’s not fixed yet, and it’s on her to-do list right behind open heart surgery.

Screen Shot 2015-06-24 at 9.49.02 AM

But over the last few months, as we’ve ventured out more with our delicate daughter, I’ve learned in the beginning, I felt a sense of entitlement. I thought I could tell someone their response to my daughter was wrong and set them straight on how to treat others. However, I’ve since learned some new life lessons as I navigate these new waters.

1. Give them grace.

Know they’ve probably never had many opportunities to interact with children like my daughter. Give them grace that they might not know what to say or how to look or if it’s OK to stare. Acknowledge they’re trying, even if it’s not quite what I want to hear. Then give them the grace to walk into an uncomfortable conversation in hopes of bringing comfort to them on this topic.

2. Forgive often.

In the beginning, I took offense to so many things, thinking no one understood. But that’s just it — many don’t understand. And that’s OK. We’re in this together to learn together. Our family doesn’t have this all down, and our family and friends are learning right beside us. Before we had our daughter, we were these people too. People are going to say the wrong things, especially at the wrong times, like after a long day of appointments. But most of the time, they don’t know what they’re saying is wrong, they’re just trying to show support. It’s true many people don’t understand our journey, but that just means it’s our joy to help them understand, not to be offended and shut them out.

3. Be willing to talk.

I’ve learned to be willing to open up and say to a stranger staring at my daughter, “Isn’t she beautiful? It’s OK to stare at beauty like that.” Then I smile and ask if they have questions or would like to talk about her. Be willing to be the one to open the door of communication. Often times others are too scared to ask questions for fear of offending.

We’d rather they say, “I’m sorry, I don’t mean to stare,” so we can say,  “We want you to take in all of the beauty in her, not to look away as if to say she’s not worthy.”

4. Be ready to teach.

We have this bag we call the “Bunny Bag.” It has a big bunny stuffed animal in it, along with the book “Audrey Bunny” by Angie Smith about a bunny with an imperfect heart, and a short picture book called “Mattie Breathes” by Tracie Loux about what a tracheostomy is in children’s terms and concepts. We’ve lent it to friends and to our kiddos’ playmates so they can learn more about their little sister. We’re teaching our friends, and they’re teaching their friends. Nothing makes our hearts soar more than when our friends say, “Will you teach me about Chloe?”

5. Be courageous enough to keep on keeping on.

At times, we’ve wanted to shut ourselves in and not venture out anymore due to the many stares, the comments and the sidelong glances. But what does that solve? It doesn’t help teach. It doesn’t help our daughter to thrive and grow. It doesn’t encourage our other children that it’s OK to look different. So we keep on keeping on. We continue to share pictures of her and share her life with others.

Screen Shot 2015-06-24 at 9.49.12 AM

We don’t have it all figured out and we haven’t rehearsed some sort of speech to give each person who does a double take on our daughter. We’ve learned it’s not about being entitled to correct someone who says something wrong, but more about giving them grace and space to learn how to treat others with differences and disabilities. It’s more about gratitude for their desire to learn than it is about calling them out on the injustice of saying or doing the wrong thing.

Kindness goes a long way, and when it comes to teaching others about disabilities and differences, grace and kindness go much farther in the long road of changing the world’s view of what is considered normal.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

3k
3k
TOPICS
JOIN THE CONVERSATION

When My Son Was Called 'Incompatible With Life'

4k
4k

Have you felt it? That overwhelming sensation that sometimes occurs when you think about your diagnosis or the diagnosis of your loved one? At times, the pressure can be almost tangible.

Society often uses a diagnosis to define and determine what a person is capable or not capable of doing. It becomes a way to assess what a person is compatible or incompatible with. It outlines how a person will or will not be able to respond to a given situation. Although a diagnosis is not necessarily a bad thing, and it can be a useful tool, sadly, all too often society turns it into a list of limitations. Sometimes the diagnosis even overrides who the person actually is and it becomes their new identity in the eyes of others.

Even before my son was born, he received a diagnosis  one that deemed him “incompatible with life.” In the eyes of the medical world, this was our baby’s new identity: “incompatible with life.” It didn’t matter that I could hear my son’s heart beating, that I could see him moving on the ultrasound, and that I could feel him kicking. Despite what we were told, the definitions we were given, and even the reality of what would eventually happen, we did not allow his diagnosis to define him. We embraced the fact that he was alive inside me, and we chose to make the most of my pregnancy. We did not know what would happen after he was born, but we knew he was more than the diagnosis we received.

We were blessed that our son was born alive. He opened his eyes, his heart continued to beat, and he breathed the same air I was breathing. His stay was short, but it was sweet. Our little guy was compatible — he proved that by being alive inside of me, and he continued to prove that during his time in our arms. He was so much more than a diagnosis.

Over and over again, individuals who have received a diagnosis (any diagnosis) have proven they are more than that diagnosis. They have proven their diagnosis is not their identity. They have proven they are compatible — compatible with learning, growing and developing. Compatible with sports, hobbies, education and careers. Compatible with peers, family, friends, employers and significant others. They are compatible. Even when their diagnosis predicts that they will be incompatible, they have proven the definitions wrong.

It’s true that sometimes a condition is limiting, and an individual’s life may not be the same as someone else’s life, but it doesn’t mean they are incompatible. They may do things differently, participate in an alternate capacity or need something adapted so they can be successful. Accommodations might be needed, but that unique person is not incompatible.

Regardless of a person’s diagnosis or their condition, regardless of what they can or cannot do, regardless of how long they live or what they accomplish  they are compatible — compatible with love! Love extends boundaries and limitations. Love is not restricted by a diagnosis, a condition or a disability. What love looks like and how it is expressed cannot be defined by the medical professionals. Love makes each of us compatible.

I am so thankful that my son taught me how to look beyond a diagnosis. He taught me how I could love regardless of the limitations that might occur. My son proved to me, “Diagnosis does not determine compatibility with love.”

diagnosis does not determine compatibility with love

Have you proven you are more than your diagnosis? What are you compatible with? What has your loved one done to defy the odds? How have you or your loved one exemplified that diagnosis does not determine compatibility with love? Please share — let’s celebrate our compatibility!

To learn how we celebrate our son’s life and how he defied the odds by becoming an organ donor please visit www.purposefulgift.com.

Lead photo source: Thinkstock Images

4k
4k
TOPICS
JOIN THE CONVERSATION

Chris Pratt Hilariously Recreates Famous Movie Scene With Kids in the Hospital

The kids at Our Lady of the Lake Children’s Hospital got a special treat this weekend.

Actor Chris Pratt, who’s in the recently released “Jurassic World” movie, lifted spirits by playing and hanging out with children at the Baton Rouge based hospital, according to the hospital’s Facebook page. The visit was coordinated by the Children’s Miracle Network Hospitals, an organization that fundraises for children’s hospitals.

In the popular film, Pratt plays Owen Grady, a character who trains Velociraptors in an iconic scene. In the photo below, Pratt hilariously recreated this scene with some of his new friends at the hospital.

ICYMI: Chris Pratt recently used his "raptor whispering" skills to cheer up patients at Our Lady of the Lake Children’s...

Posted by Our Lady of the Lake Children's Hospital on Monday, June 22, 2015

 

Pratt’s “raptor whispering” skills really helped to cheer up the patients.

“Our patients were all smiles and we are so thankful to Chris for lifting their spirits by visiting and handing out ‘Jurassic World’ goodies,” Our Lady of the Lake Children’s Hospital posted on their Facebook page.

Check out more photos from Pratt’s visit below:

 

TOPICS
, ,
JOIN THE CONVERSATION

53 Photos of Fathers Helping Their Children Through Challenging Times

2k
2k

Perhaps one of the most unfair parts of fatherhood is that, according to stereotypes at least, you’re not supposed to be scared. But when your child is in the hospital, that’s next to impossible. That’s OK, though, because even when faced with fear, dads have a way of making everything seem all right. With a hug. With a reassuring look. With a dad joke. With just being there.

Below are just a few of the many fathers who sent us a photo of them with their child while getting through a difficult hospital stay. Here’s to you, dads.

1.

Dad holding baby in hospital
Photo via Andrea Legg

2.

Dad kissing forehead of child in hospital
Photo via Jessica Bodey

3.

Dad smiling at baby in hospital
Photo via Kristina Johnson

4.

Dad holding baby wearing a face mask
Photo via Jen Carter

5.

Dad holding baby in hospital next to mom
Photo via Kathryn Singleton

6.

Dad hugging baby sitting on hospital bed
Photo via Amber Walls Fosler

7.

Dad sitting in front of hospital bed with baby and toys
Photo via Gloria Campbell

8.

Dad standing next to hospital bed with baby and toys
Photo via Autism Mom

9.

Dad standing next to hospital bed baby is lying on
Photo via Jackie Renee

10.

Dad holding hand of baby on hospital bed
Photo via Tracy Slusher Cox

11.

Dad holding daughter in hospital room
Photo via Kate Sytsma

12.

Dad looking down at baby while holding him
Photo via Tristen Wuori

13.

Dad smiling at camera while holding baby at hospital
Photo via Lindsay Vanzandt

14.

Dad standing next to child's hospital bed
Photo via Stephanie Johnson

15.

Dad holding baby and smiling
Photo via Samantha N. DaRocha

16.

Dad holding baby and smiling
Photo via Yentte Xia Fourie

17.

Father holding baby on his lap
Photo via Tanya Louise Tunbridge

18.

Dad next to daughter on hospital couch
Photo via Mike Porath, Founder of The Mighty

19.

Dad next to baby in NICU
Photo via Erica Davis Canfield

20.

Dad holding baby with a pink and white polka dot blanket
Photo via Jacqui Hicklin

21.

Dad and child laughing together next to hospital bed
Photo via Kathryn Singleton

22.

Dad sitting in front of son in a wheelchair in the hospital
Photo via Jeff Davidson

23.

Dad making frowning face while holding crying baby in hospital
Photo via Kimberly Messer Grossman

24.

Collage of photos of dad next to son in hospital
Photo via Helen Bates

25.

Dad sleeping with face mask on while holding baby in hospital
Photo via Heather Bell League

26.

Dad wearing face mask and holding baby in NICU
Photo via Aleisha Aguilera

27.

Dad holding daughter's hand while she sleeps in hospital bed
Photo via Ashley Mobley

28.

Dad sleeping next to sleeping baby at the hospital
Photo via Brenda Hickson

29.

Dad giving child on hospital bed a kiss on the forehead
Photo via Vickie South Sheffield

30.

Dad sitting with baby on his lap
Photo via Lisa De Luna

31.

Dad holding and looking down at baby in hospital
Photo via Krissy Heller

32.

Dad sitting in hospital chair, holding baby
Photo via Sarah Thomas Bobo

33.

Dad posing for photo next to baby, baby holding his finger
Photo via Harvey TheRealtor

34.

Dad holding baby and stuffed animal in hospital chair
Photo via Beth Dellinger Mead

35.

Dad holding child and stuffed animals in hospital
Photo via Katherine Smith

36.

Dad in red shirt holding baby in hospital
Photo via Lisa Stewart

37.

Dad smiling next to child in the hospital
Photo via Lisa Blackstone

38.

Dad holding baby in the hospital
Photo via Leidy Jesse Garcia

39.

Dad next to son in hospital bed, dad holding a book next to his face
Photo via Susan Crowe Brown

40.

Dad holding and sleeping next to baby in hospital bed
Photo via Heather Cortez

41.

Dad touching foreheads with child in the hospital
Photo via Anita Birk

42.

Dad sitting next to son on a bench in the hospital
Photo via Amber Gonzales

43.

Dad smiling and sitting next to daughter coloring at table
Photo via Lauren Casper

44.

Dad sitting next to daughter on hospital bed
Photo via Kate Crabb

45.

Dad touching head of son in hospital bed
Photo via Diana Cosman

46.

Dad touching arm of baby in hospital crib
Photo via Christa Douglas Gill

47.

Dad reading to child in hospital bed
Photo via Anita Birk

48.

Baby looking up at dad in hospital
Photo via Tania de la Ossa-Rucker

49.

Dad holding baby
Photo via Nate Vandenberg

50.

Dad giving support to daughter in hospital bed
Photo via Shauna Cantrell

51.

Dad and mom holding and looking down at baby
Photo via Lauren Wunderlich

52.

Dad reading to baby in hospital chair, baby smiling and holding arm up
Photo via Kathryn Singleton

53.

Dad next to baby in NICU
Photo via Sydnie Eileen Bill

Related: 50 Photos of Mothers Helping Their Children Through Challenging Times

53 Photos of Fathers Helping Their Children Through Challenging Times
2k
2k
TOPICS
, Listicle, Video
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.