Jody K.

This is a story about time travel. It’s a story about what happened to a young woman when she stepped into the world of dementia and how it changed her forever.  It’s about expectations and how what we get is not always what we thought and how that may be one of the greatest gifts we receive in our lives.  Mostly, it’s a story about people and how we are all bound together regardless of age. 

 Here’s how the story begins.
A young social worker, eager to work with older adults because of what happened to her Grandma during her battle with dementia, took a job in a nursing home on the dementia unit.  It was scary and strange. There were weird smells and sounds. Residents were doing and saying weird things. She was often intimidated and even more often didn’t know what to do when the residents did or said something that didn’t make sense.  This went on for several months and she started to think this wasn’t the job for her.  Then one day, she became a time traveler and everything changed. It was an ordinary day and the young woman was sitting in the “living room” with her residents listening to big band music.

Suddenly, “Frank” stood, grabbed the young woman’s hand and dragged her to her feet.  “Time for your lesson, let’s go!” he said.  The young woman froze, unsure of what to do.  But then she looked at the smile on Frank’s face, his foot tapping along with the music. She smiled back and Frank said “is this your first time here?” “Here”, she found out later, was a dance hall popular in the 1930’s and 1940’s where Frank had been a dance instructor. She took a deep breath and   concentrated on the obvious joy in Frank’s face.  “Don’t be nervous”, he said as he wrapped his arms around her and twirled her around.  For the next 10 minutes they danced and he chatted to her about bands, the steps he was teaching her, his favorite fashions and how many young men he knew were shipping out. For the briefest of times, she was transported to America in the 1940’s, and it was as real to her as it was to him in those moments.

That was 15 years ago, and in those 15 years I have worked both in long term care facilities and in the homes of my clients, and have travelled in time many, many times. I have gone out for drinks at the most exclusive nightclub in 1960’s New York, belted out “God Bless America at a 4th of July parade in Iowa in the 1950’s with “my neighbor” and been a secretary to an executive on Madison Avenue in the same decade.  I took a cruise with my “husband” in the 1970’s, went shopping at Macy’s for a fur coat with my “sister” in the 30’s and once, listened to a “little girl” tell the secret story her Granny told her about the silver coffee pot in her dining room that had been buried in the backyard to save it from Sherman’s army as he marched to the sea. Sometimes, I travelled to sad and frightening places; the depression, Nazi Germany, the south during the Civil Rights Movement.

I never imagined I would experience such amazing things. I never imagined that in caring for people ravaged by dementia that their memories would become mine in such a special way. I never expected to be a time traveler, but I am grateful every day that I am.

Nathan J.

Growing up with a sick family member, you tend to get used to certain things. My mother had medical conditions brought on by diabetes that grew worse and worse over the years. When I was really young, I remember her being able to walk for a while without becoming tired. By the time I was in middle school, she required a cane. And by the time I was a senior in high school, a simple act of transporting her to the car caused her excruciating pain.

 I always remembered my mother being sick, but It wasn’t until my teenage years that I began to realize how sick she was. As the youngest child and only son, my sisters had always taken on the “heavy duty” chores that were required to take care of my mother. They drove to the pharmacist to pick up her medicine, took her to physical therapy and took up the challenge of keeping an ill loved one emotionally happy. 

One by one my sisters graduated from high school and received scholarships at universities. However, the schools were hours away. There was no way they would be able to commute to look after my mom.
My mother encouraged them to attend, making sure not to hinder their success. Reluctantly, my sisters left, leaving me responsible for my mother.

I wasn’t a good caregiver at first. At 17 years old and full of self-pity, I could only think how this was affecting me. I did see this as a problem that I had to take care of. I didn’t want to have to drive her places and I didn’t feel like going on errands for her when hanging out with my friends seemed much more appealing.
 
But slowly, I began to realize how much my mother was going through. It wasn’t until we had spent months together, just her and I, when I could see how much energy it took for her to push through the day. It wasn’t until I went through the “burden” of driving her to the pharmacy that I saw the endurance required to sit in a car with painfully swollen knees. It wasn’t until I held her hand at night that I felt the love that’s needed to fall asleep after so much pain, knowing that tomorrow will be tougher than today.

 We have since lost our mother, but it amazes me how much of her I still see in my sisters. They are all strong women, full of love and life. Of course, I know that this is no coincidence. While I thought they were caring for my mother, she was actually teaching them how to face life’s challenges. Even with her body failing, she showed her daughters how to live. And that was her gift for me, too.

To me, this is the most rewarding aspect about being a caregiver; we think we’re caring for them, when they’re giving us strength all along.

Socorro E.

“Mom. Mom. Mom.” Still groggy, I take in what is happening. I am not a morning person but with a smile, I bolt from my bed and give Daniel a hug. We dance. I ask Daniel if he is hungry. “Oatmeal” responds his communication device. The difficulties of nine years of caregiving melt away and are eclipsed by the joy in this one exquisitely delicious moment. Do not get me wrong. Caregiving is difficult. Daniel is 10 years old.

Born with Velocardiofacial Syndrome, he requires constant supervision, is not potty trained, cannot speak, and he’s only had his communication device for five months. His medical notebook is in volumes. We live in specialty, surgery, and therapy world.

Nine years ago in 2005, I brought Daniel and 3 siblings into my home under foster care. Daniel was 14 months, his siblings were 2, 3, and 5 years of age. My biological children were 9, 11, and 15. Daniel has the most medical issues but his sister Alicia also has special needs.

As the only adult (and driver) in my house, those beginning days are a blur. In our first winter together, all seven kids got the flu at the same time. I remember thinking, “I am not going to make it!” It was a moment most definitely not “eclipsed by joy.”

Now I have compiled a library of moments. When I see my children living well, I am overwhelmed with love and gratitude. I count it a privilege to be there for my children when they need me. It is that overwhelming feeling of love and gratitude that makes caregiving rewarding. “Mom. Mom. Mom.”

Albert V.

As a Certified Nursing Assistant, I found work at a local nursing home. My first assignment was Ms. Carrie, an 88-year old resident who was hostile and difficult to deal with. “How are you today, Ms. Carrie?” the head nurse greeted her. “Who’s that bimbo?” she said, pointing at me. “He’s your new caregiver,” said the head nurse.
Despite Ms. Carrie’s angry face, I was determined to win her over. “Are you ready for breakfast?” I asked her. She mumbled a curse word which I ignored it. After helping her into her wheelchair, I grabbed her toothbrush and said, “I’m going to brush your teeth. Then I’ll give you water to rinse your mouth. Now don’t swallow it!” Ms. Carrie ignored my instructions and swallowed the water. I gently untangled her thin hair and helped her into her wheelchair.  As the wheelchair traveled down the hallway, she quickly grabbed the handrail.
“Please release the handrail so we can go to the dining area,” I said politely. Reluctantly, she released it gave me a mischievous grin.  In the dining room, I fed her and conversed with her. She remained silent.
At 12:30 p.m., I returned her to her table. Cafeteria personnel brought her tray and she quickly reached for the bread.    “Chew slowly, Ms. Carrie,” I said. She started to say something unkind but changed her mind.  Two hours later, she was ready for her nap. As I lay her down, she wrapped her arms around my neck and would not let go. “You’re choking me, Ms. Carrie. Please let me live!” I teased. A big smile brightened her face.      
Each time I complimented Ms. Carrie, she smiled. One morning while brushing her teeth, she tried to bite me. “Your teeth scare me,” I joked. She let out a hearty chuckle and showed me all her teeth.  “If you cut your hair, you’ll look younger, Ms. Carrie,” I said. “My husband liked it long!” she suddenly blurted out. Ms. Carrie was talking more. During my next visit, she tried to pinch my arm. I did a dance and made her laugh out loud. Later, she tried to bite me and I made a commotion. This time she laughed hysterically. Humor and compliments were winning her over. One afternoon, a nurse came into the room and left in a huff. Ms. Carrie had pinched her back.  “Did you notice, Ms. Carrie?” I said. “That nurse is wearing a wig. And it’s on backwards.”  Ms. Carrie’s eyes watered from laughing so hard. Within days, we had become friends. She opened up to me about the good and bad times in her life.
“My husband died of cancer,” she said.  “I’m sure he’s found peace and is no longer in pain,” I said, trying to console her. “What about me?” she screamed. I said nothing more. Three months later, Ms. Carrie passed away in her sleep. I met her children at the wake and they all thanked me for taking care of her. “Your love and patience calmed Mother and made her smile again,” said the eldest daughter.
Ms. Carrie looked so pretty in her coffin. A beautiful smile adorned her face and she looked tranquil and happy. With tears in my eyes, I whispered my last farewell.         
“Thank you, Ms. Carrie, for giving my life value and teaching me so much. May you rest in peace with your husband at your side.”

Jade G.

My son Jydon is the sweetest little boy God ever created. Why he blessed me with the honor of caring for such a special boy I will never know; just as I don't know how long I will have him. He's a very handsome 6 year old on the outside, and a sweet 6 month old baby on the inside! He's so incredibly fragile, yet has such an unbelievably strong spirit.

The care Jydon requires is a non-stop 24/7 job without days off. It's endless and often exhausting. Every bit of my life revolves around caring for him. From the moment I gave birth, him being life flighted because he could not sustain oxygen, the nearly month spent in the NICU not only changed life as I knew it, but changed me very profoundly, forever. Every day I have with him changes me a little in so many different ways. As extremely difficult and heart-wrenching as it can all be a great deal of the time; it also feels completely amazing to be blessed with such an amazing gift.

All that goes into caring for and having a child of very special needs is not really something you can put into words; it's draining, emotional, frightening, demanding, life altering. The anxiety can often overwhelm you to the point of feeling as though you can't even breathe. Then he smiles and looks very deliberately right into your eyes, and then you exhale, and you breathe, your heart melts and you very gratefully thank God you have him because you can no longer imagine or want it any other way.

Miriam H.

I married my husband 44 years ago. We have had many wonderful years together. Now I am his caregiver and have been for 8 years.  It is sad to watch him slip into the oblivion of Alzheimer’s. This disease has become a prison for both of us. As time passed he has become unable to drive, write checks, pay bills, or even to make a decisions as to what to eat at a restaurant. He needs assistance to shower, shave and brush his teeth. His communication skills are diminished. He has trouble finding words or uses the incorrect words. But through it all he is still able to tell me that he loves me.
Alzheimer’s is a prison with no walls or bars. My husband’s prison is the not knowing. Not knowing where he is, if his parents are alive, or who people are or their relationship to him. My prison is the constant sadness of seeing him deteriorate.
 My sweetheart, lover, and confidant is gone on most days but occasionally, I see remnants of the person I married. This the bittersweet flavor of Alzheimer’s.
My hope is kept alive in this darkness because we love each other. He still is able to tell me that he loves me.  He has taught me to embrace life for whatever it brings and not be fearful. It is my beautiful husband with his Alzheimer’s who has taught me the most about resilience, and the true meaning of love despite all the hard work. This is what makes caregiving for him so rewarding.

Amy G.

The title “mamma’s little helper” defines my early years. As the caregiver of my mother from my childhood throughout college, I truly learned the sacrifices and rewards of caring for others. Life with my mom has not been easy, but I have learned so much through the obstacles.
My mother was diagnosed with a mental illness early in her 20s, and throughout her life she struggled to treat it effectively. As a child, comprehending the struggle was difficult, but I learned how to soothe her and help her cope. I would often make journal entries based on my experiences with her in order to best alleviate her issues. She not only suffered from mental illness, but various debilitating issues. She had multiple knee and sinus surgeries. She also suffered from severe, chronic neck and back pain from a car accident. She found lumps in her breast shown to be benign and polyps removed from her intestine which also proved to be benign.  She was morbidly obese (300 pounds) and underwent gastric bypass surgery the summer I was 15. Her lung collapsed during surgery and she spent 2 nights in the ICU. She then stayed in the hospital an extended time for recovery. I spent the nights in the waiting room because I was too young to drive and the hospital didn’t have guest rooms. After we came home from the hospital she suffered many complications from the surgery and I cared for her throughout. I had a journal of medication administration and set my alarm throughout the day and night to give her care. I traded a summer of cheerleading competitions so I could help her recover after I had worked so hard to make the squad. As a teenager I knew the cost of caregiving.
When the time came to go to college, I was accepted to every college I applied to throughout the state. I was an honor student and believed if I worked hard in school I would excel in life and be better able to care for my mother. As the time of decision approached there was only one clear option. I forfeited the lure of a “Big Ten” college experience to stay at home and go to a regional college campus. I received a full tuition scholarship to do so. Caring for my mother and not being a financial burden was most important. I felt the sacrifice of that decision, not just the pain of all I was missing, but the many sleepless nights caring for my mom.
Through all of her ailments, the process of helping my mom was truly a rewarding experience. I knew she was sick and I could help. This was empowering as a child, teenager, and young adult. I celebrated every step forward and remained hopeful during the setbacks. I have learned there is not always an easy, immediate, or permanent solution to life’s problems, but there is still joy in the journey. Making a difference in someone else’s life has forever changed mine. I am stronger and gentler than I would have been otherwise. I decided to go into nursing because of my life experience and I have found it to be such a rewarding career. I have worked in ICU and was able to sympathize with the families and patients in a unique way. I currently work in the NICU and see life at its beginning. I have hope each life I touch will be better because of the care I give and that is the greatest reward.

Meredith W.

In my seventeen years of nursing I have seen life and death and everything in between. The bulk of my career has been providing home health, hospice and public health nursing visits. To say it is an honor to be allowed into people’s homes to provide care is an understatement. I am privy to the intimate details of a patient’s life more than I ever could be in a structured hospital environment.
It’s rarely thankless work. I have been thanked so many times for stopping by (even though I’m being paid), for listening (even though I was running late), and for caring (I do).
Helping others is a selfishly good feeling. Nursing truly is its own reward. Every day you can see that you made a difference, whether in the voiced decrease in pain, the measurements that indicate wound healing or the discernable lift in spirits.
Another gift is the ability to see into the future. It’s both a blessing and curse. You can longer ignore the fact that bad things happen to good people and we are all growing older if we’re lucky. Time and time again I have cared for people who certainly did not expect to find themselves in the position of needing help such a those with keen minds facing the onset of Alzheimer’s, increasingly unable to remember simple tasks much to their frustration.
I’ve also been inspired by those who have suffered devastating disabilities and yet fight to accomplish far beyond what most able-bodied individuals achieve. Their stories continue to inspire and motivate me long after they are gone.
It has been a privilege to take care of people who lived through the Great Depression, the Dust Bowl, wars and the sexual revolution. I have learned so much from this living history.  I ask long married couples their secret.  My favorite answer, “You just stay married.” Another oft asked question, “So how does it feel to be fill-in-the-blank years old?” This is mostly met with a faraway look and a wistful smile and once with, “I still feel sixteen.  I feel like I could do a cartwheel right now.” He was 90, so I asked him to please refrain.

Lynn G.

When it comes to caregiving, I have never thought of it as work. I have been a Certified Nursing Assistant working in a nursing home, as well as a child-specific Teachers’ Aide in the local school district. And to me, they both qualify as caregivers. I have also babysat and worked in a day care center.
To what makes it rewarding is the smiles, the trust you gain and the knowing that you are doing something for someone that needs your help. They could not do as well without your being there.
I have gained so much personally. Whether it is a child that smiles at you and falls asleep in your arms, or a teen that will confide in you they don’t understand something and just need your help because you won’t make fun of them. When it comes to the older generations and the elderly, I love when they share true life stories with me. It’s so much better than a history book.
I truthfully love to work with the dementia units and the kids with behavioral problems. All they need is someone that will listen to them and not judge them.  Whether I am in WWII or teaching a child how to understand what he just read in class, I am in heaven.
The jobs themselves can get messy, and sometimes they are very difficult when there are setbacks. But I honestly believe that they reason I do what I do for others are because they are here on this earth to help me to be a better person.
They are my angels. They are broken, but then again, we all are. They just want to be loved, and then again, we all want that too. So to me, I am nothing special. I am just like you. But my goal in life is to make the world a better place. And by being a caregiver, I can do that every day. It may be in small ways, but they are big ways to those I help.
And to me, at the end of the day, I can sleep well knowing that I matter to another human being.

Cindy B.

We all have ‘plans’ for ourselves. After all, we are supposed to know what we want to ‘do’ (professionally) by the time we're freshmen or sophomores in college.  I was 'supposed' to be a successful advertising executive.  I moved to the East coast after graduating with a BS in Marketing/Advertising.  I took a job with a large advertising agency in midtown Manhattan. I was on my way!  I was miserable!  My dad was a physician and both sisters were RN's.  I was in the process of relocating to the Dallas/Fort Worth area and decided to drop into Texas Christian University's Harris School of Nursing. That day was the changing point in my life.  I knew I was where I belonged! 
I worked my first few years in the hospital setting but, upon moving to Colorado Springs, decided to pursue a position in the field that scared me the most - hospice.  Death and dying were topics I was not comfortable with! Over the next ten years, I took care of patients at end-of-life.  I quickly found out that it was not only the role I played in their last few days or hours but also the role they played in how I chose to live. Gradually, over time, I learned how to ‘pick my battles carefully,’ to accept people for who they were, to embrace change, and  most importantly - take nothing for granted.  My experiences as a hospice nurse brought me from a fear of death and dying to a place of celebrating what life has to offer. 
The baby I was carrying at graduation was eventually diagnosed with Autism.  I learned very quickly how to 'maneuver the system' in order to advocate for my son and along the way, have taken on the challenge (as Clinical Director for a home healthcare agency) of increasing our role in the care of the DD (Developmentally Delayed) adult population.
 Caring for my son and the DD population has taught me patience, sacrifice and unconditional love. 
Some of us go through life working jobs. Few of us are fortunate enough to find our calling.  I feel I am proof that if you love what you do, you never have to go to work a day in your life.  My favorite quote is from Dr. Wayne Dyer who said, "when you change the way you look at things, the things you look at change.”

Margaret M.

Most people wouldn't consider a haircut to be a form of caregiving. On the outside it seems merely cosmetic, with no effect on a person's health or well-being. Yet, my twelve years of experience as a hair stylist has shown me just how closely hair care and appearances are related to self-esteem, dignity and well-being.
 It seems like every week I am reminded of the impact of hairstyling as a form of caregiving through interactions with my clients. One of the most memorable instances was a haircut I did for a 90 year old woman who is a regular at my salon. We have a routine. She gets dropped off by a family member or transportation service, then we talk about how life has been since we last saw one another. Even with her hearing aids in I have to speak very loudly. I ask her to remove her hearing aids so that I can wash her hair, then we chat a bit more during the set and style process. On this day, everything seemed like business as usual at first but I quickly noticed that instead of her usual cheery demeanor, she was very quiet and pensive. I wanted to respect her silence, so we didn't talk much until she sat in the styling chair.
“How was your week?” I asked, studying her reflection.  “I have to bury my husband” she said, “he always liked it when I got my hair done.” Our eyes met in the mirror. “And he would have wanted me to get my hair done today.”
 It was just the two of us in the salon that day and the only sounds were my snipping scissors and her soft crying. Some people vent when they sit in the stylist’s chair, some take the time to catch up on reading, or chat about current events. Every client has their paradigms. For most people, the trip is in some way a time for self-care. It may be a busy parent who finally has some down time, someone with a stressful career that takes the time to decompress, or a 90 year old woman who just needs a quiet place to reflect on her husband of over 65 years who always enjoyed it when she got her hair done.
 Health is not merely the absence of disease but encompasses physical, social and emotional well-being. Thus, caregiving must manifest itself in many forms. Operating a business that allows me to care for people’s social and emotional well-being through the hair that goes with them throughout the world is one of the ways caregiving manifests itself in my life.