Jennifer T.

On a cold February day, twin boys entered the world 3 ½ months early. Sadly, one of the baby boys passed away from complications. On that day I, one of his hospital nurses, was determined to stay by this family’s side and do everything I could to get the other boy, Baby O, home. Little did any of us know at the time, I would follow them home and become one of Baby O’s home nurses. Usually when babies are born premature they go home by their expected due date. Baby O however, would stay in the hospital for a total of 8 months because of many complications and surgeries. Due to having a breathing tube in his throat for over 5 months, his airway became completely swollen and Baby O needed a tracheostomy in order to breathe and a g-tube placed in order to eat. When children have an “artificial” airway (the tracheostomy), they require nursing care at home because if that airway came out or became occluded, the child could die within minutes since they would not have a way to breathe. I have now been taking care of Baby O at home for 2 years, and it has been the most rewarding and humbling experience.

When Baby O first arrived home, he was not able to sit up, roll over or communicate anything to us.  Baby O receives therapies to strengthen his muscles and help him develop. Over the last 2 years, I would incorporate all of his therapies into my nursing care to give him the best chance at becoming a strong and healthy little boy. Today, Baby O is walking, running, climbing and doing everything a 2 ½ year old boy should be doing. It really is amazing to think that Baby O could barely turn his head from side to side when he left the hospital and all of his family’s and caregivers hard work allowed him to be so strong. 

Having a tracheosotmy and swollen airway, no sound comes out of Baby O’s mouth. When he cries we cannot hear him and he always has to be in someone’s viewing. Over the last 2 years, sign language has become the primary way to communicate with Baby O.  I learn signs and teach Baby O, and he learns signs and teaches me.  It is remarkable to see a 2 ½ year old teaching sign language to doctors, nurses, parents and other children. He inspires me to educate other families going through similar situations and the general population who might not understand why Baby O cannot speak.  When we go on walks or to the park, I see people look at Baby O and I know they have questions about his tracheosotmy and signing. I love to explain Baby O’s amazing journey and how he became such an inspiration to me and everyone around him. Baby O still has quite the journey ahead of him.  He has many surgeries that he still has to go through and many procedures that he cannot understand why they have to be done. Through it all, Baby O has a smile on his face, does everything he can to make you laugh and loves to no end because that is all he has experienced in his short life so far.  Because Baby O can live at home with nursing care, he is thriving at life. I have been on Baby O’s journey from the beginning and he will always be an important part of my life. It is miraculous to see how far he has come, when people around him did not know what his outcome might be. Baby O’s experience is the most rewarding reason I became a nurse.  It is a privilege to be a part of Baby O’s care and to have become part of his family. I will be forever grateful because he has taught me that things don’t always go as planned and different can be incredible.

Leticia G.

“What Does It Mean To Be A Caregiver?”

When I was younger, I didn’t know the meaning or understand why people would put their parents in a home. Now that I work here, I have a better understanding of why they put them in homes. I’ve been here for three years and I have seen cases where residents don’t shower, shave or change their clothes; basically they have lost being independent of themselves. Being with them every day, I feel as if they were my parents or grandparents. You get this unexplainable love for them and all you want is for them to be clean, loved and cared for. Many of the residents do not have loved ones visiting them and you feel the pain, as if they were your parent and you wouldn’t want that for your own. You grow on them and they grow on you. I don’t know what my future may bring me, but just being here this little time, I see a totally different way to plan your future and retirement. Only God knows what his plans for you are, so I live one day at a time and make the best of it. I can only hope that I do get to be a grandmother and see my children grow up to be responsible adults. So to me being a caregiver is to love yourself, love what you do, never take life for granted and live it the best way you can. Never take or make judgment on why someone is living in a home or why we might ourselves decide to, as well.

Abigail D.

I am a Licensed Vocational Nurse that works for a home health agency which provides respite care for medical needs children. When you’re in health care as a nurse, you always try to educate yourself in ways to teach the patient or family. I never thought about what I would learn with my experiences as a caregiver. Bedside manner takes on a whole new personal meaning for me when working one-on-one with a client and their family. The families I work with make me feel so much like family that around the holidays my job doesn’t even really feel like work, I feel as if I’m in my own home.

I am humbled and grateful that there are opportunities that help children stay at home instead of the hospital. With the chance to complement those ideals and improve quality of life, it is insurmountable to measure with words in regards to reward. I am a patient advocate for the child’s needs in ways they cannot fully communicate, the resolution of their necessities being fulfilled is a direct reflection of my privilege to be a nurse and the honor to which I uphold these obligations.

I have yet to find anything that gives me more solace and sense of purpose than I do when I take care of someone, and with the responsibility of taking care of a child, it is important to me that I stay up to date and never stop improving the care I administer; because the value of a life that is other than my own is at stake.

Being able to provide these services as a caregiver out of a home really gives me the impression that God’s work is right where he intended, and I couldn’t imagine doing anything else.

Maria V.

“Adrian giggles,” a perfect nickname for a healthy and smiling baby. The second of my sons; remembering that expressive look and that kitten-like cry when he was born gives me great tenderness. But just as his birth and early development brought happiness, I can’t deny the pain and suffering his changes caused. At the age of 18 months that little boy who liked to play, hug and smile…literally went away.  

Time was against us, and even more against him. His body was there, but it seemed as if his mind and his feelings had gone out to play and did not come back. As his mother, I felt infinitely lost in a sea of confusion. And I asked of life, where can my son be? Where has he gone? And still the answers didn’t come, not even by spending sleepless hours looking for information about my baby’s diagnosis. “Generalized Developmental Disorder, Autism Spectrum”, that was the phrase that the specialists  gave with great tact.

At that moment, I decided that I had two options, sit down to cry over our sorrow or take the bull by the horns; and I believe I took the second one in spite of going through a divorce after the diagnosis of my son. I researched in depth what I was faced with, who we would fight against, or better said, who we would have to deal with. Then I tried to find all the help and possible therapies for him. Accordingly, I promised myself to be more than a mother for him, I would be his guide, his friend and above all that I would move the seas, heaven and earth to provide him with all the means whereby he could better develop.

With the passage of time, all those energies faded. Depression came for a visit, and I didn’t know how to deal with that. Each day I saw that Adrian was further and further away from us, with no physical contact. On a day that was nothing special, dispirited, I threw myself into the armchair to cry and I saw my son looking up at the ceiling. There he was, like a little lifeless doll. I ran to him and hugged him, and without thinking…I said in his ear “Adrian, my son where are you, tell me my love!”  But all I got for an answer was a cold breath. I went back to the armchair with an ache in my chest and dropped my gaze.

After a moment I felt small arms wrapping around me and then that voice, that little voice, that little lovely voice saying, “MAMI.” And just that one word, four letters, was motivation for all these years, in spite of not hearing it for so much more time.

For me, sharing every day with Adrian, to fight for his evolution, his development, to provide him with the means to grow physically and mentally is one of my greatest goals. It is also to make him feel a part of the family, society and of the world…And to proudly be a mother who takes care of her son and who daily battles to train him not only for life, but for his own personal challenges like achieving control over his sphincters. An ordinary day for us is like a thousand springs, we laugh like children and learn together. Autism has made us more united, has made us accomplices, has made us value life and the meaning of love. Appreciating one word said by my son is to listen to the sweetest of songs. I don’t consider myself to be a caregiver, I am convinced that I am a student of that wonderful being named Adrian and that his teachings will make me a better human being.

Jessica T.

Being a mother and caregiver to my special needs daughter is no routine walk in the park!  My 8 year old daughter, Tiffy has uncontrolled seizures caused by Lennox Gastaut Syndrome.  Despite Tiffy’s poor seizure control, she continues to be one of the sweetest, humorous and unforgettably determined 8 year old’s you will ever meet. “Stay still, don’t move,” she tells the nurses when she has to have blood drawn.  “Momma, I did great!” she tells me when they are checking her blood pressure.  “Christmas tree” she says proudly on Halloween as she wobbles door to door, instead of saying “ Trick or Treat.”  “Don’t worry, I got you” she says when she see’s someone upset. Innocently laughing and giggling at the same episodes of Elmo or Barney, over and over again.

Being a nurse and my daughter’s caregiver has made me appreciate the simple things in life. The comfort I can offer her, when she feels she is about to have a seizure and waddles to me and says “hold me” or ‘‘two big jerks.” It ‘s being able to see the determination in her eyes, knowing that even though she failed to meet a therapy goal this week, she will meet it one day.  It ‘s her looking outside the window on a hot summer day seeing other kids swim in their pool, and then placing a giant inflatable pool in the middle of the kitchen because she wants to swim, too.  It is accepting that things get messy, sticky, dirty or broken and it’s ok. It’s going to a toy store and letting her pick out any toy she wants, only to pick the same 99 cent set of markers, again. It’s everyone looking at you strange because you get super excited because your daughter just did “thumbs up.” It’s saving old dried up weeds because she picked them and gave them to you proudly saying, “I got you flowers for your birthday.”

It’s being your daughter’s voice when she cannot speak for herself.  It’s having a hectic schedule, turned upside down because your sleeping beauty isn’t feeling too well, she needs to sleep and you need to be there when she wakes up.  It’s long sleepless nights at home or in the hospital because she is sick again, and although you need sleep, you have adapted. Not sleeping or leaving her side because of the feared and endless “what if’s.” 

My daughter is my all-star and I am her personal cheerleader, bodyguard, medic, mind reader, therapist, instructor, chauffeur, chef and most importantly her best friend. So what makes caregiving rewarding?  Well it isn’t a walk in the park.  It’s a gentle, unsteady uphill stroll through an exclusive members-only, sunny rainbow shining, rose scented, tulip-filled garden.

 My reward is the realization and true appreciation for the simple things in life. Increased patience and acceptance in a fast paced world, where many of these little things are often taken for granted.

Debora E.

The Care Gift

“Daaddy!...  Come get me uu-pp!”   Sixteen month old Wyatt and I head into the rec room.  “Good morning Jonah, ready to get up?”  I turn off the bi-pap, take off his mask and hang it up. “Is Daddy sweepin’? Roll me over to see him.”  “Nope he’s at work. Mommy slept with you last night.”

I turn off the feeding pump and take down the leftover formula, clamp his g-tube extension and take the bag out, turn down the humidifier, empty the water, wipe his face, change his diaper, open the curtains, turn off the air cleaner, etc. Wyatt is a big help messing with all accessible equipment and emptying drawers as we go. Soon the coughing starts as Jonah’s fighting a respiratory infection.  So add inhaler, cough assist and suction and we’re finally ready to “get up.”

 “Ok, Jonah where do you want to go?”  “Bwown couch.” For the next couple hours he tells me all about bow and arrows and backing trailers into swamps and all sorts of interesting things, between steady coughing fits as he clears his lungs from the long night.  Today, like most days, there are phone calls to make, doctors to email, airways to clear…in between putting out fires and defending big brother from wild, busy, so adorable Wyatt. 

Jonah will be 4 years old in just a few months. A miracle really, as each day of his life is a challenge.  We chose his name before we had an inkling how it would fit him.  It means “dove”-  a symbol of peace and faith. He cannot crawl, walk, be on his belly, etc… but can sit with support and play for hours with little cars, trucks, machines… Typical for his age, whatever big brother is interested in lately, is also what Jonah wants. They had fun last night with lights off hunting alligators with a “flashlight.”  What he lacks in physical strength he makes up for in spirit, facial expressions, funny stories and ways of saying things and an overall sweet personality.  He doles out kisses and hugs and “I wuv you’s” freely. Despite rainy weather we try to make it out for a bit of fresh air and mudding.  Once we’re bundled up he drives his power chair out and about, while Wyatt chases along.  Rain comes down in earnest soon and we head back in for more cough treatments and lunch and nap for Wyatt.

 Soon the older siblings are home from school and he has 4 more caregivers fetching him things, feeding him and playing with him as I grab a shower, go to the grocery store and get dinner on.  There’s still more cough treatments and g-tube feedings to do, getting him to roll on the floor and go in his standing aid. At the end of the long day, we’re once again at his bedside, hooking up all the machinery.  As the bi-pap mask goes on we kiss his cheek with another, “Good night, love you...”   He’s out. 

Every day is a long day for Jonah. Dad and I take turns now sleeping with him.  He needs to be rolled over several times and needs airway treatments when he’s sick. Last winter with new baby in the house, Dad took over Jonah’s night time care and hospital stays and lots of his daily routine.  The bond between them grew even stronger. I look back and wonder how we made it through last winter with little sleep and Dad working overtime and in and out of the hospital with Jonah so many times we lost count. There is so much to be thankful for this season. Jonah is stronger, handling respiratory stuff better, and hasn’t been hospitalized yet. Life seems relatively calm, we actually get a few things done here and there.  We’re having much needed down time on occasion. And most importantly, our little guy is still gracing our days and nights with his love and lessons.

Alice R.

Autism was a term unfamiliar to our family before the year 2007 when my first grandson was born. It was something we had only heard in passing but never really understood what it meant to have Autism. It was something that no family could prepare for. Roger was only months old when he was diagnosed with Autism. Within two years, he would have a new sister, Sarah, also diagnosed. Both my daughter and her husband work full time jobs to make ends meet. It was extremely difficult raising two children affected with this disability. I became their caregiver when Roger was weeks old. Then I took on the responsibility of care giving for two children with disabilities, something that was completely new to a 53 year old grandmother. In 2010, a third child was born, Matthew. Never did I imagine that I would be a 58 year old grandmother taking care of three wonderful, loving and challenging children affected with Autism.

The most rewarding thing that comes out of taking care of my grandchildren is not only the smiles, the hugs, the laughs, the silly comments, but the “I love you” that comes after spilling the juice or the look of innocence after throwing all the eggs on the floor.

There isn’t a day that goes by that I don’t think “I’m too old for this” and then five minutes later, come to a realization that “I can never be too old for this.” I have a new appreciation for young life, and have often taken for granted how easy my responsibilities were in raising three girls. Now, watching my daughter, helping her raise three of her own, neither of which are “easy.” When they come out of their rooms every morning and yell “Grandma is here!!” it brings a smile to my heart. I am always there when they need me to turn on their games, to help them put on their shoes or to teach them how to sing the alphabet. I have taught each one of them how to “row a boat gently down the stream”. I never thought that after five years that they would have taught me more about life and how to love than I have learned in all these years. Roger, for instance, hardly shows emotion due to the nature and severity of his diagnosis, but I know that when he says, “ I love you grandma!“ that he means it with every inch of his heart. How easy it is to forget the little things in life that warms our hearts, but they remind me every single day!

It isn’t an easy battle to feed them or to change a 5 year old toddlers diaper, to teach them to share or to get them to speak for what they would like to do each day, but no challenge is without a reward. What makes caregiving rewarding for me is to know that my grandchildren were able to have me in their life, to know that I have taught them how to count, how to say “excuse me” and “thank you” and a few other words in Spanish, as well. I count my blessings every day that I have the opportunity to spend time with my grandchildren. Autism or not, they are what brings new life into my world each day.

Virginia V.

The past twelve years of my life have been dedicated to care giving, and those past twelve years have honestly been the best of my life. I am blessed with the opportunity to make someone smile and visit someone who is alone and just do those little things that can make their day a little better. I know that I have been making a difference, not only in my six years of working in a nursing home, but also in the lives of two people who became family to me. I am currently my grandmother's full-time caregiver. She moved into my home with my family fifteen years ago. She got older and needed more help and so I cooked for her and showered her; I no longer worked outside my home. Together, we've been through so much. There were times she was extremely ill in the hospital and it's heartbreaking to see someone I love and care for dearly in so much pain. I have to put my feelings aside and be strong for the both of us to encourage and comfort her.

With the support of my husband and help from my three daughters, I was able to stay strong and overcome these obstacles with my grandmother. My grandmother is roommates with my youngest daughter and I tell my friends how funny it is that a 97 year old woman shares a bed with my 10 year old daughter inside a three bedroom apartment.

Together, we're a family of six: my husband, my three daughters, my grandmother and myself. I am so proud of my girls and their compassion for the people who need a little extra help. I can safely say that the greatest reward is realizing that as I'm growing older and becoming less able to caregive at my fullest, my daughters will step in and take whatever measures are needed to help those in need of help.

There are times at the stores that my daughters open the door for an elderly person or someone in a wheelchair, and I can't help but wonder if they realize their youth and health will not last forever, but that someday someone will care for them the way we cared for others.

Onie W.

The economy led to a decision to return to school - my husband, seeking a school administrative Masters degree and me, switching careers to become a nurse.  I was fortunate to have a supportive spouse who allowed me to return to school full-time, along with children who helped lighten household responsibilities.  It was a hard two years, living on one income with a family of seven.  Having just graduated from nursing school, I had been applying for nurse intern positions, studying for the NCLEX and most importantly, supporting my sister during her transition to motherhood, as a single parent. Circumstances and family obligation (loyalty) would change our plans, but only slightly AND only temporarily…“This is what God intends for me to do right now,” was my epiphany during a conversation with my husband.  After two years as the sole breadwinner of the family, my husband was anxious for me to find a job.  However, I was adamant in my outlook, “Sometimes money isn’t everything.  Somehow, we will make it a few more months.”  At the time, my sister and her daughter were in the hospital.  It had been a difficult labor for my sister, which resulted in my niece facing developmental challenges for the rest of her life. I remained by my sister’s side, showing support and helping her understand and cope with her daughter’s prognosis. 

My sister and I began to coordinate care before her baby’s discharge: physical therapy, occupational therapy, speech therapy and home health nursing.  Each major event in the baby’s life seemed to coincide with a major event in my own life: 1)  VP shunt placement for her; NCLEX for me, 2)  G-tube placement for her; NCLEX results for me. Each event had a positive outcome.  I was now a licensed RN and the baby was ready for discharge. My sister returned to work after a short maternity leave and entrusted me to take care of her daughter. Knowing that I was available to care for her baby gave my sister peace of mind while at work. Taking care of this innocent lamb, I found myself a bundle of nerves daily!  My ultimate goal?  Send her home alive each day.  Although I was not her parent, I found myself grieving for the things that she would not be able to do and the adjustment my sister would have in her life.  Then, I rejoiced in the blessing that she was to her mother, my family, and me.  Her life would be ideal - she was not capable of ill will and offered unconditional love; she would bring out the best in all who surrounded her with love and care.  This baby was my first patient, albeit as an unemployed caregiver.  I applauded every single mini-milestone she had reached - sucking on a pacifier five times in a row or tracking objects with her eyes.  So many responsibilities came with this infant - elevating her head during feedings to prevent aspiration, monitoring her for constipation, performing exercises intermittently through the day to maintain muscle tone, and taking her to doctor visits.  Care for my niece equaled that caliber of care I would provide for my own five children.  

That conversation with my husband has come full circle.  After a few weeks of caring for my niece, the home health nursing agency assigned to her care offered me an official position as her private duty nurse. Talk about blessings!  I have been cautioned about separating my nursing responsibilities from my being an aunt and that I would never be “off duty.”  I always have the baby’s best interest at the core of my caregiving.  I serve as her aunt, caregiver and advocate. I have been lucky to have an extremely supportive family, plus my employer offers substitute nurses in my absence.  So far, I have been true to my goal - sending the baby home alive each day. This week, I heard her giggle for the first time!  It brought me to tears. I keep reminding myself that the baby has the power in this relationship: she achieves goals at her own pace. If anything, she has taught me extreme patience.  I am constantly assessing for her readiness to have tummy time or sit up, and then I jump at her willingness to participate.  I still applaud the mini-milestones - successful oral feedings, or a day without throwing up.  She has progressed so much from the day she was born.  My role as caregiver is truly rewarding: overseeing my niece’s well-being, supporting my sister emotionally, and earning an income for my own family. My care for this baby is a model for which I hope will extend to all patients entrusted to me.  I am thankful and blessed for the opportunity set before me.  If God has other plans for me, I will follow them - however, “This is what God intends for me to do right now.”

Carla H.

I have the honor of being the sole caregiver to my wonderful, beautiful mother. She is 73 years young and a cancer survivor. In 2006 my mother was diagnosed with breast cancer, uterus cancer and skin cancer. She is a trooper and survived all three, but unfortunately she is now bedridden and weighs 380 pounds and suffers from severe arthritis in her spine and joints. She is unable to do for herself and she is totally dependent on me; this once strong, independent women who raised four children on her own with a janitorial salary. My mom is my inspiration and my strength and I thank God for every day he gives me with my mom.

Whenever life brings me challenges that I feel are too hard to bear, all I have to do is take one look at my mom and see her courage, her strength, her outlook on life and I am filled with strength and hope.

Even though she is confined to her bed in a room all day, she always has a smile on her face every day. My mother’s only worry is that she is a burden on me and my family, and that she is keeping me from having a more fulfilled life. But I tell her, "Mama, I was born to take care of you, I feel privileged to have this honor and to now be your mommy and be here for you like you have always been there for me and my family."

To me, being a caregiver has enriched my life to value the little things that we all take for granted and to appreciate God’s blessings and be a better human being. Thank you, mama for being my best friend, my counselor, my conscience and the world’s greatest mom. You are a blessing in my life. I love you.

Virginia C.

My name is Virginia and I have been caregiving for my mother for the past 4 years in my home. I am 44 years old. My Mom’s name is Joyce. She is 67 years old and has suffered from what seems a lifetime of mental health issues since the time she was a young adult.

She is anyone’s daughter, sister, mother, grandmother and friend. She is a wonderful lady with sparkling blue eyes, gorgeous silver and black hair and an infectious laugh. She loves people. Her struggles are ones that many of us would otherwise deem simple and basic. She processes things much slower than most of us. As she ages, I’ve found balancing her mental health has been very touch and go. Fragile. I worry that she will face dementia or Alzheimer’s. Her mother, my Grandmother suffered from Alzheimer’s. A disease unthinkable. My mom does best around family, friends and activities; keeping her mind busy. She enjoys attending the YMCA and attending luncheons with seniors, playing bingo, attending adult day services, word puzzles, an avid fan of Wheel of Fortune and walking our family pet.

 Since the youngest age of 5, I always knew that one day my role in life would be to care for my Mom. I never questioned it. I always knew. I remember the sadness I felt seeing and knowing challenges she faced and endured; it broke my heart. Those memories are as clear as today. When a child looks to their parent, they are supposed to be perfect in every way. I have found through her life challenges she is still perfect in every way. She is my mom. She gave me life. She deserves everything good. I have carried worry on my shoulders throughout my life as all I ever wanted was to just give my mom the balanced mind she so deserved to move through life with ease; without taking medication everyday to maintain her mental balance; without people looking at her as if she were different in some way. As a child and growing through the years it has been a deep pain and struggle. Standing tall for my ,om was always my first priority. Always wanting to be her protector.

Today, having my Mom live with me and my family has been a balance each day; one day at a time. We share wonderful moments together, as well as challenging ones. I work full time, care for a young son with school and extra-curricular activities, maintaining our home, preparing healthy meals for my family each night, in addition to caring for any need my Mom has for each and every day. I attend all of her appointments with her. Some days there aren’t rainbows and cupcakes, but at the end of the day the sun always shines through with the strong bond of love for which we share.

 What makes caregiving for my mother rewarding? I couldn’t ever imagine not caring for my Mom. She is deserving of the best and is a wonderful human being. The reward is knowing she is good, she is okay, she is happy, she is safe, she is healthy. Knowing she is loved and that all of her needs are met to the best of my ability. This is my role and duty as her daughter. The rewards are seeing a smile on her face and in her mind she is safe. The rewards are that I care for her heart and soul while she is here with us. I love my mom!