Carol L.

Rewards of Caregiving

I have cared for Mom for three and one-half years.  For the first year and one-half, I also cared for Dad. He died August 24, 2009 just three weeks shy of their 66th wedding anniversary.
Caring for both of them was challenging. I often said that aging parents are the gods’ revenge for our teenage years. Teenagers and elderly both want their independence and the right to make decisions about their own lives.

Mom was in moderate stages of dementia when Dad died. He worked hard to care for her and keep her at home. He had been primary caregiver for two years before I started helping.
He would sing to her – the favorite was Irish Lullaby. Mom loved hearing those words, “Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li, that's an Irish lullaby.”

One day I helped Mom get cleaned up. Then we went in the room where Dad was watching television. Dad said, “You smell nice. I like clean old ladies.” Mom never lost a beat and replied, “And I like dirty old men.”

Since Dad’s death, Mom’s progression seems to have become more rapid.
She has gone through many phases.

There was a non-stop talking phase. Challenging is an understatement.
One day I asked, “Do you ever stop talking?” She quickly replied, “Yes,” took a deep breath and added, “And then I start again.”
One Saturday morning, in the middle of one of her streaks, she asked, “What shall I do?” (A common question with dementia.) I replied, “You can start cleaning the bathroom, or there are dishes to put in the dishwasher, or vacuum the living room, or…” Mom interrupted me with, “I wish you wouldn’t talk so much.”

Almost to the exact date of the two year anniversary of Dad’s death, Mom became fully bedridden. She was already incontinent and had been having mobility difficulties, but not able to get out and about was new. She can no longer feed herself, is fully incontinent, and requires much more intense care.

Every moment is worth it. She still has a quick wit and brings a lot of joy and laughter to my life. She eats well. One day I told her, “If you keep eating so much, you are going to be a fat, old lady.” She responded, “Who are you calling old?” I love those moments especially because it is so unpredictable if she will be able to speak at any given time. She goes between very lucid moments to seemingly in her own far off world.

One day I found Dad’s Bing Crosby CD and put it in for Mom. She was quiet and seemed to enjoying listening to the music. Then track eight began. Mom slowly reached her weakened arm upward, taking hold of an imaginary hand. She brought  it down and kissed it gently. She began moving her feet and arms as she “danced” to the music.
The tears filled my eyes as I, too, remembered Dad singing those words, “Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li, that's an Irish lullaby.”

What are the rewards of caregiving? Knowing I helped Dad stay at home where he wanted to be and am doing the same for Mom. Knowing I am making a difference in my mother’s life. I cannot beat the dementia, but I can give Mom a quality of life where she is treated with dignity and respect and valued as the wonderful human being she is. And, most of all, keeping memories alive.

*Irish Lullaby – words and music written in 1914 by James Royce Shannon (1881-1946)

Arianna H.

CARE GIVING IS REWARDING TO ME BECAUSE ...
... I have been a Mother Hen all of my life. My earliest memory is that of bringing home a seemingly abandoned baby bird. The fact that I climbed the tree, scooched across the tree branch and took it out of the nest, does not matter. I did so because I believed the dead bird in the street was its mommy. That was just the beginning of me bringing home kittens, puppies, snakes, squirrels, rabbits and anything else that needed my love and attention for its betterment. I also brought home friends that showed signs of and said they were being abused at home. If a kid ran-away, they were likely at my house.
... Once you finally know what it is to be a good mother, you act accordingly. I grew up looking for things to love because I did not get enough of it from my family. My Father moved away for work and my Mother changed the plan of moving once he got everything settled and decided a life away from home, without me, was best. However, in my lifetime, God has given me so many great examples what great mothers are and how great mothers act. I now know how to love unconditionally, cars without judging all while disciplining for the good of everyone involved .. Those lessons opened up a great sense of nurture Within me .
... My Grammy is so easy to take care of. I care-give for my grandmother. She is the love of my life. Technically, she was supposed to have raised me. But it took a girlfriend since 4th grade to remind me that my Grammy was never home. She was in fact always at church or the racetrack whenever I think back. That led me to taking care of my younger cousins (that Grammy was supposed to have been babysitting), everyday_ I can say that having the responsibility of taking care of others, did keep me out of trouble and my mind focused on the tasks at hand, sometimes there were five or six of those iii buggers around .
... My Grammy means the world to me. Although she was not there a lot she was there when I needed her and she taught me great lesson son being myself and loving me even when I make mistakes and not allowing the words of others to get·me-down, or is they do, not letting them keep me-down. Again that lil lady is the love-of my life and every day we hang out, I learn something new about life, love, or our family history. I happen to be paid to take care of my Grammy, but if I did not need the money, Grammy would get a treatment anyway. I wish that more of my cousins or at least her children (she has 6) would take more of an interest in her. I hate when I have to go to one of my other two jobs and leave her home, although my Mom does come straight home from work .

.. . If you get what you give, have great treatment coming back to me. When I'm tired or the weather is bad (I take public transportation and I'm in Chicago) I think I have to go hang out with Grammy because I wouldn't want my cars taker to not show up when I am expecting them , no matter what is happening in their lives. I would want to feel all-important (at least during my time with them) and that nothing and no one else in their life matters. Therefore, that is the second reason why I get up and go, the first being I' love my Grammy so. I have looked after other elderly neighbors, my other iii old lady passed away at a fabulous age of 94; she was smart, beautiful, kind and sweet. My life mimics hers in so many ways and the lessons about business that she taught me will last forever in my mind and heart. I've also had the city clean up another elderly lady's home, give her a case-worker and made sure she was signed up for all programs for which she was eligible. That all started because she asked me to go to the store for her.
I live by leaving people better off than when they first met me. I search for reasons to compliment others but I always having words of encouragement at the ready.
CARE GIVING IS REWARDING TO ME BECAUSE IT IS SECOND NATURE AND FEELS SO NATURAL AND I FEEL BAD WHEN I DO NOT TAKE AN OPPORTUNITY TO BE A POSITIVE FORCE IN SOMEONE'S LIFE WHEN I HAVE HAD THE CHANCE.

Antonio I.

My Second Chance

It was late morning at a Kaiser neurology consultation office in Los Angeles when for the first time I felt the sensation of falling into a void, of feeling that the end was upon us.  We were with a nurse and a social worker when the doctor came into the room.  After greeting us and asking a couple of questions, the neurologist let the bomb drop.  She looked squarely into her face when she said, “Ela, you have Alzheimer’s.”
            The silence that followed was of the kind that explodes, when time ceases to exist and stops in anxious suspense…  a death sentence as verdict, the end of everything.  In the midst of that dense quiet, we heard the doctor’s voice again asking, “Don’t you have anything to say, Ela?”  “Yes,” she said very quietly, “I feel sorry for him.” Meanwhile I stood paralyzed, incapable of feeling or thinking.
            A few months earlier we had had a conference with three neurologists.  They considered that retirement, the loneliness of having adult children now absent, and the fact that we had moved, had plunged her into acute depression.  I doubted that diagnosis.  I later mentioned this to our main physician, to which she answered, “That’s better than Alzheimer, because if it were the case it would not be good for you at all.”  But Alzheimer indeed had knocked on our door.  A dark shadow had been cast upon our home and bode nothing good for our future.
            Or perhaps that wasn’t the case and that by an irony of fate that moment of helplessness marked the beginning of something different, something that with time I have come to consider a second chance.
            We had retired at the best time in our lives and devoted ourselves to what we’d always hoped for.  We were active members at our Cuban Club.  We traveled with the group to different countries in Europe on three occasions, as well to China, Thailand, Singapore and Malaysia. Ela had a PhD in pedagogy and a Master’s degree in mathematics from the University of Santiago de Cuba.  For more than 30 years she taught at Belmont High, here in Los Angeles. She had always been the “brain” in the family, but after retiring she began to exhibit erratic behavior and required medical attention.
            Silently, the “German” had taken over her privileged mind until at last it “burned the house down”, and at what time, good heavens!  I had recently undergone heart surgery and my situation was delicate.  The surgery had been deemed difficult and perhaps that’s why Kaiser facilitated my spending the night before surgery at the Metropolitan Hotel in Hollywood with my wife and three children. For them it was a cheerful night at the restaurant.  I only ate what I felt like and drank a couple of Margarita Cadillacs.  “So what! They’re going to operate on me tomorrow” I said and they laughed.
            For them the moment had been festive, but for me it had been a farewell.  I suspected that everything was over and over it was, at least for the three days I spent in intensive care under life support.  But the Lord allowed me to return home.  It must have been important for Kaiser because a reporter from channel 34, visited me for a news piece on heart surgery.
            Meanwhile, the malignant disease viciously attacked my wife with increasing speed. She began to lose faculties such as gait, assimilating food and communicating.  It was very sad not to be able to go to restaurants like before.  We couldn’t even ride around in the car due to the vomiting.  By then, I had many medical constraints because of my congenital heart condition.  I wasn’t supposed to lift heavy weight or exert myself.  When Ela was diagnosed with Alzheimer’s my heart was only at 29% of its capacity, and to make matters worse we did not qualify for Social Security aid.  That is when I made my decision with the conviction that we had both reached the end of the line.  I devoted myself in heart and soul to care for her all “36 hours” in a day of Alzheimer’s, which is how it was described in a book on the subject.
            My wife was bound to a bed to be fed with tubes.  Her prognosis was only 6 to 9 months of life.  But life cannot be foretold.  Next February will mark her 3rd year on the bed our Lord appointed for her.
            I believe this intense struggle was a determining factor in my cardiologist’s decision last year to install a pacemaker in me.  However, a miracle was about to be revealed.  Maybe it was the exertion of caring for her night and day, of lifting a greater weight than I had been allowed to, and ignoring part of the diet what produced this surprise: my heart capacity had gone from 29% after the surgery to 49%, which according to my cardiologist was not bad for my age.
            Nevertheless the most beautiful thing was the philosophical shift that changed my attitude towards life.  The happiness of being by her side could not be compared to anything.  Watching her in bed at night under the dim light made me imagine her a little angel that God had entrusted me with.  At the beginning I received crucial help from my doctor and psychiatric advisor against depression. Today, my life has a meaning that can’t be put into words, akin to the significance in the life of one preordained.
            I believe I feel the serenity of a peaceful pond in my profound gratitude to my wife for having given me the miracle of three children, of caring for them during our most difficult years as refuges, and for the fact that even in this state of no return she would have given me a second chance: the chance of being by her side.

Debra B.

WHAT MAKES CAREGIVING REWARDING?
Being a professional in the medical field affords me many opportunities to care for others with numerous rewards. They measure from the smallest smile, touch or to a heartfelt thank you. Sometimes the caregiving is not so much a physical caring of a person but a caring of the emotional well-being of a person. The art of caring, is being in tune with both aspects. It encompasses willingness to go the extra step in touching someone's life.
The incident that comes to mind involved a tragic accident in which a 17yr old was critically injured and not expected to survive. Once the family arrived from states away, I provided open visiting to allow them as much time as possible with their loved one. The sisters and mother all were very emotional as expected. They had many questions and openly displayed their grief. They sat there cherishing their final moments.
The dad was stoic all night and didn't speak or acknowledge in anyway the grim situation. He was strong for his family. The mother and girls decided to nap a little, I assured them I'd come and get them with any change either way. As I was bathing their son, I saw dad come in alone and peek around the curtain. I told him to come in, that I could use some help. I already sensed how helpless he felt. Fathers are 'to fix' -he hadn't been even able to allow himself to touch his son. had him sit by the bed and encouraged him to touch him--he couldn't, thus through the bath I cleverly needed help lifting his arms. The moment he touched the tears flowed. I said, tell me about your son, the stories and tears continued to flow.
The most poignant part of the story; the father shared that his son had recently gotten a tatoo against his (dads) wishes. The dad shared, he was angered about it, he reprimanded him about how it will be there forever, the risks etc. Then he asked where he had gotten it. The next day at supper he sat by his son and his sleeve pulled up; revealing the exact same tatoo in the exact location on his arm. The son was livid and reprimanded him with the exact same words. Now with tears streaming down his face as he laughed and cried, he said it's ALL I have left of my son. The tatoo and the memories.
A few months later they came back to visit the path of their son's last trip. The dad stopped and thanked me for giving him those last precious hours with his son, for seeing exactly what he had needed, when he didn't know what he needed.
These are the most rewarding caregiving moments.

Fabiola G.

My teenage years where the toughest; caring for a baby sister much too sick and beyond my help to thrive. Our kind mother all alone, was forced to work to support us all. I learned through those long years that what we declare 'impossible' is often conquered through our motivation.

With that zeal mom and I dedicated all our time, all our love, all our patience to raising my frequently ill little sister. Through the years my sister grew stronger; just seeing her smile and eat was our triumph.

Though at times, the tasks of life doubled in weight, all three of us became one, united- true family. Together, we overcame three decades. Yes, we won!
Our dependent little child became a loving, and generous young lady.
Because of her I have felt the 'love of angels' in my heart- much too beautiful to describe with words.
 
And then we lost our mother.
The depths of pain were cold, like dark, long nights for my little sister. Hand in hand we'd pass the seasons; her body too robbed and weak to desire life. She slowing sank and felt to die. Sleeping, waking she'd plead to me, “Are you here?” “Are you still here?”

So, one day from the sorrows and triumphs of my heart, I gave her Hope through a poem, in reply. The same Hope which 28 years ago, her baby face gave me ... when I felt I could NOT rise:

Little sister, yes, I'm here.
It's this love that keeps us near.

Oh, I feel you in silence crush
Sometimes, till evening’s hush..

In your longing’s deep, you teem the seas;
you splash, you leap,  you covet to roam free.

Tonight let’s fly with thoughts instead
Where sun, where mountain, hide and wed.

Where your eyes reflect the flutters
of butterfly wings and periwinkle flowers

Drift with me, I will lift you…
Lean on me, I will hear you…
Little sister, hide in me.

You give life to the warrior within me
You give rise to the wings of my compassion

Little Sister, lean on me, I will bear you?
Little sister, hide in me.

Georganna L.

The Care Gift

When I was fourteen years old, I had my first experience at caring for someone else. My grandfather was gravely ill and being so young, I had never been around someone who was so sick, much less, dying.  At first, I was somewhat overwhelmed and even a little frightened.  As the days went by, I started to understand just how important and how meaningful even the smallest things can be to someone who is completely helpless.  There is no joy in watching someone endure discomfort,  but I found a very special kind of happiness in knowing that I could make him smile and there was no compromise in making sure his every need was taken care of. 
When I was in my early 20's my Grandmother became ill with Alzheimer's.  I had a baby and it was definitely a challenge when I moved in with her. Back then there was not much literature on the subject and so I just began each day with two little children.  I learned by trial and error and we found ways to make things work and I know her great-great grandbaby gave her some very real moments of joy.
 After I finished college my Father fell ill with Alzheimer's.  And this is the part of the story that amazes me.  You see, me and my Father were never very close.  He was a bit of an ogre when I was growing up.  As Dad became increasingly lost in the shadowy darkness of this disease he became more and more childlike.    And then an amazing thing happened.  Every day that I cared for him, I found I was the one being cared for. The more I comforted him and cared for him, the more the hurt from my broken childhood fell away.   Caring for my Father gave me so much closure.   At the risk of sounding trite, it really proves that love can conquer anything.
After Daddy died, his sister became ill with the same illness. I helped on weekends to give my cousin a break and tried to teach him everything I had learned.  It's okay to let her count the spoons!  Count them with her!  And it's okay to let her organize her closet in the middle of the night.  Just try to get as much rest as possible!
 Then came time to take care of my Momma.  In one way or another, she took care of me my whole life, including a very devoted 3 years of passionate patient care when I endured four very difficult back surgeries. I thank God for the wonderful hospice hearts that helped me make the final days of her life so comfortable and easy.   Those people-they are the heroes! 
Now I take care of my grandbabies.  I have two of them.   And the most beautiful part of this story is that my grandchildren are now learning to take care of me.  Letting go and learning to be CARED FOR  is quite a challenge for almost anyone; I suppose. But it is the cycle of life.  They bring Grandma her cane and fix me a cup of tea.  They bring me a book and curl up beside me,  ready for Grandma to make them laugh and to feel a gentle touch from my hand.   And from this, they learn.   That is the best gift of all.

Wolf E.

My wife and I were caregivers for my 93 year old mother who had Alzheimer’s. Although a difficult task, the time we had taking care of her changed our lives and hers forever. She passed away a year ago now, and we have no regrets. Mom and I never really got along very well, but I had a deep love for her and a strong sense of obligation to keep her out of a nursing home. She was never fond of my wife – something I attributed to jealousy.

When we first began caring for her, she had little control of her bodily functions and was rather taciturn. We bathed her and fed her and took her out on drives. We also took her on long walks in our rural area, pushing her in her wheelchair after bundling her up. We gave her manicures and pedicures and styled her hair. Over time, she began to be more loving and reached out to us like she had never done before. While she was still lucid, she told me stories of her childhood and young adulthood that I had never heard. She told my wife family secrets, and they laughed and cried together. We ended up needing additional help of a paid caregiver at times, but Mom always wanted my wife there instead.

She asked for her as often as for me, and their relationship blossomed. One of her last clear sentences to my wife was, “You are just like a daughter to me. I love you.” It meant the world to my wife and to me. I was able to tell Mom things I had never said before to her. Our relationship was better in the 2 years that we cared for her than it was my entire life. I finally felt loved and fulfilled in our mother-son bond. I know she felt the same. We were able to give her the love and dignity that every older person deserves in their final years, and we became better people for the experience. When she passed away, nothing was left unsaid or undone, so we had a whole bunch of new warm memories and no regrets, and Mom’s life was complete, rather than just over.

Jessica R.

MY STORY AS A CAREGIVER BEGAN OVER 6 AND A HALF YEARS AGO. MY SON WAS BORN 12 WEEKS EARLY. HE SPENT 3 MONTHS IN NICU'S IN 2 DIFFERENT STATES. THAT FIRST 365 DAYS OF HIS LIFE, I'D SAY I SPENT MORE THAN A THIRD THE NIGHTS IN THE HOSPITAL WITH HIM. HE FOUGHT FROM DAY 1. HE'S HAD SEVERAL SURGERIES AND PROCEDURES AND MANY TO COME. HE'S DEALT WITH A LOT BECAUSE OF HIS PREMATURITY. HE STILL DOES. AND THEN AROUND AGE 21/2 HE WAS DIAGNOSED WITH AUTISM. I'VE HEARD PLENTY OF MOTHERS OF CHILDREN ON THE AUTISM SPECTRUM SAY THAT THEY LET THEIR EXPECTATIONS FOR THEIR CHILDREN GO AS A PART OF THEIR GRIEVING PROCESS IN ACCEPTING THIS DIAGNOSIS. I FEEL DIFFERENTLY. MY EXPECTATIONS FOR OWEN HAVEN'T CHANGED AT ALL. THE ONLY THING THAT'S CHANGED IS OUR ROADMAP FOR GETTING THERE.

MY JOB AS HIS MOTHER IS TO KEEP HIM SAFE AND TO MAKE HIM FEEL SAFE. SOUNDS SIMPLE ENOUGH, RIGHT? WE GO TO THE STORE AND OWEN MELTS DOWN. HE'S OVERSTIMULATED. I DON'T TAKE HIM TO THE STORE ANYMORE. WE GO TO THE BARBER'S. HE MELTS DOWN BECAUSE HE'S TERRIFIED OF HAIR CLIPPERS. NOW I CUT HIS HAIR AT HOME, USING ONLY SCISSORS. HE'S HAD A LONG DAY AT SCHOOL AND COMES HOME TO DRAG OUT EVERY SINGLE STUFFED ANIMAL HE OWNS AND THEN ROLLS AROUND IN THEM TO CALM DOWN. I TELL HIS TEACHER AT SCHOOL TO SET HIM UP WITH A BUNK BED WITH STUFFED ANIMALS AS HIS CALMING SPOT. HE HAS PROBLEMS MAKING FRIENDS AT SCHOOL. I GO TO MANY MEETINGS AND LOSE TONS OF SLEEP RESEARCHING HOW TO GET SOCIAL SKILLS SERVICES AT THE SCHOOL. AND I SUCCEED. OWEN FOR THE FIRST TIME EVER WAS TELLING ME YESTERDAY THAT HE WANTS TO INVITE HIS FRIENDS FROM SCHOOL TO HIS NEXT BIRTHDAY PARTY.

BUT, SPECIAL NEEDS OR NOT, MY SON IS STILL A LITTLE BOY. HE IS VERY SMART, CURIOUS, BUSY AND SENSITIVE. HIS DESIRE TO BE LIKE EVERY OTHER LITTLE BOY IS VERY STRONG. AND WE'RE GOING TO GET HIM THERE... AND THEN MAYBE INTO THE OVAL OFFICE.

I CAN'T COUNT TO NUMBER OF TIMES I'VE HEARD "GIRL, I DON'T KNOW HOW YOU DO IT." I DON'T KNOW HOW EITHER, BUT I KNOW "WHY". THE LOVE I HAVE FOR MY SON IS UNCONDITIONAL.

Virginia F.

Why Care giving is Rewarding to me
I never thought that at the age of 71 years young that I would be thrown into the world of care giving, especially since I have been divorced for over 30 years, living alone and having three grown children in their forties. But as the world turns, tragic events don't seem to leave any of us untouched. In August of2009, my youngest child who is also a twin suffered a spinal cord injury as a result of a horse riding accident in South Florida. Traveling from Southern California to Florida and realizing the severity of his accident after speaking with his Neurosurgeon, I also realized that my days of being a nurturing mother were not all together over although my son, John, was 44 years old and a successful businessman at the time. John had not married and did not have any children that could look after him. There was no doubt about it, he would come live with me in California and I would do everything possible to assist him in his rehabilitation.
For many years I was the caregiver for my ailing father and now I was repeating my caregiver duties for my youngest son. My life in the last 15 years has been that of a retired person - enjoying time with my friends, traveling, volunteering for various causes and not having any great concern or for that matter a great purpose in my life. I've always felt that my great purpose in life was raising three wonderful children that I am extremely proud of and now that I have accomplished that - I can relax and enjoy my golden years. In the last two years I have re-defined my purpose, my destiny and its rewards by being there for my son as his full time caregiver during this time of great trials for both of us.
As a paraplegic with paralysis below the waist my son has had to re-learn how to live without the use of his legs, bladder and bowel. As the caregiver I had to also learn how to take care of him and get him to the point of self-independence - which we are both almost there. I mention self-independence because whether we are considered "disabled" or not, we are all dependent on each other as human beings and citizens of the world. None of us is truly independent. It is said that to "Give" is better than to "Receive" because through "giving" we build and strengthen relationships that make us happy. My greatest reward has been rebuilding and strengthening a relationship with my son and letting him depend on me when the moment calls for it.
Care giving in my relationship with my son defines my love for him. There is no greater reward for me than to have the ability to help my son when he needs me at his most vulnerable moments- going through difficult physical and emotional changes. My son has mentioned that over the last two years he has felt as if he has been going through a metamorphosis and on further reflection I feel as if r have also been going through my own metamorphosis through my care giving. Now at 73 years of age, I continue to develop and grow spiritually, emotionally and even physically stronger, a result of caring for my son. To care for my son I had to get in very good shape. I am only 4 feet 10 inches tall and my son is 6 feet. I do yoga and Pilates to build strength so I can lift his wheelchair into the trunk of the car six to ten times a week. I am thankful that I am strong and healthy and can provide all the care my son needs. Care giving has given me a chance to get to know my son as a vulnerable and emotional adult in a wheelchair. I feel that we have reached an elevated plain not reachable by the typical relationship that a mother would have with her adult son and there is no question that his disability and my care giving has brought us to this higher level. For this, I am grateful.
As a caregiver I am also somewhat of a cheerleader - keeping spirits high. It is rewarding to know that during days my son is in severe pain, I can raise his spirit with a good story or funny joke that will take his mind off his pain for a period of time. I can also cook his favorite meals and provide him with his favorite deserts.
In summary, my relationship with my son continues to mature. My love for him makes it even more rewarding than words can describe. I feel at times that God has set a plan in place to bring me spiritually and emotionally closer to my son. He is doing well in his rehabilitation and physical therapy and am so proud of him because I know how much pain he is in. It's further rewarding to know that I have been there during his progression in therapy and experiencing with him his daily peaks and valleys, struggles and triumphs. His suffering has been my suffering and his rewards my rewards.

Linda G.

"What Makes Caregiving Rewarding?"

As a single parent and after raising three (3) children of my own, the next phase of my life came about quickly and unexpectedly. I watched as my dad a very proud, hardworking man began to wage his battle with Parkinson's, suffering from rigidity of the body with loss of motor skills/functions and the ability to speak for nearly five (5) years and a mother being diagnosed with Colon Cancer during the first year of my dad's illness. My mom refused to move forward with her surgery during the first year of my dad's illness, insisting she was the only one who could take care of him. By all accounts this was quite overwhelming to say the least, but as I began to care for both of my parents, while still holding down a full-time job, which I loved, I realized the remaining time we would spend together would be the most important time of my life. One might ask, "Where is the reward in any of this?" I can only say I found my silver lining and reward in the tranquility of each moment of this journey, be it spent in silence or pain. Just being present, savoring the moments even in the most difficult of times and circumstances proved to be rewarding in itself. Remembering the good and the bad helps one connect all the dots and this as I now know became a way of life for me.

Although I come from an extremely large family, once sickness and illness set in, you would've thought I was an only child with no immediate relatives. My father was one of eleven (11) children, the eldest son who over the years would eagerly and readily make himself available to assist his siblings whenever he was called upon. Therefore, I couldn't phantom why not one of them called or visited even though many lived in close proximity to my dad. My brother's rationale, "you have to remember they are experiencing their own mortality" just didn't quite do it for me. I'm still trying to figure this one out, but during my own journey I have learned not to judge others. When dad recovered from his brain surgery in 2006 my brother-in-law agreed to care for him at his home in Stockton, California. I would travel to visit dad each weekend, taking his favorite dish and my specialty dish, gumbo. It was during this time my mother would finally agree to move forward with her surgery, which was more extensive due to her failure to have it early on. I would see my mom through her surgery and cover her appointments for chemo and radiation treatments with the assistance of my grown children. Don't ask me how I was able to manage it all, it was like an out of body experience. I did what had to be done. After a year and a half of being cared for by my brother-in-law, my dad was placed in a skilled nursing facility. It was during his stay there and just prior to his hospice care, I began frantically searching for a house to accommodate his special needs, thus creating a space where he could spend his final days in a home setting and pleasant environment. Unfortunately, one month after purchasing the house my dad passed away in October 2007.

I remember and find joy in going over to the nursing facility three (3) days a week after work and on Saturday and Sunday. Sometimes upon my arrival to the facility I'd find things weren't up to par, so I would switch the hours I'd go there and whenever issues/concerns were raised they were quickly addressed. Even though the setting wasn't the most ideal or what I felt my father deserved, my joy came from sitting quietly beside his bed and watching old westerns with him. I purchased his favorites (with actors John Wayne-Randolph Scott-Lee Van Cleef-Roy Rogers-Gene Autry), a library of westerns, but he only wanted to watch the same western over and over - Alan Ladd in the movie "Shane." After each viewing my dad would weep and then cry out in a sound I came to recognize as laughter once he lost his ability to communicate verbally. Just the sheer joy of being in his presence, stroking his hair, helping him sip on his favorite milk shake or kissing his forehead-as I left for the night saying, "I'll see you tomorrow dad" brought about a sense of normalcy. Even if I had no way of knowing when the last tomorrow would come for us this routine kept my spirit alive and proved rewarding.

I retired in September 2009 upon observing the declining health of my mom. In 2010 I moved into the house I purchased back in 2007 for my dad and although bitter sweet still, this house has become a home where I now care for my mother. The home is serving its original purpose after all yes another reward. My mom is well care for in a warm, comfortable environment, and although she may never admit it, she is happy as well. Even though I realize our days together here are numbered, living through this experience with both my parents has been the most rewarding and challenging aspect of my life. I can only wonder what is in store for me on my next journey as the previous one has been well travelled from beginning to end.

Lisa E.

Growing up was always an adventure at our house. Spur of the moment camping trips, sleeping on the beach in the back of the truck. My parents refused to let life be mundane. I have three sisters and each parent had their special and unique relationship with us all. I was always the protector, in my tiny mind that is what I was supposed to do. My dad was special ops in the Air Force and he would be gone for months at a time. My job was to sleep on the floor by my mother's bed, so that if anyone tried to get her they would have to go through me, I was under the age of 10. But that was my purpose in my tiny world. Well as I grew and became a woman, with a family of my own.... Mom and Dad were still there. My sister's path took them away from Fort Worth, TX.... my path included my parents... .101, they became my best friend, late night card games, and guidance in my marriage and raising my kids. My superhero role of protector did not disappear; it just took on new responsibilities… like always have an extra door key and gas can because my parents were famous for locking the keys in the car or running out of gas... and I slipped my cape on and flew to the rescue. We had so much fun.... so many beautiful memories. My protector roll changed on December 15, 2005. I became an even greater superhero in my father's eyes. I became my dad's caregiver. Yes the dreaded words... CANCER. How could this be happening to us.... our family..... one of my best friends?

It did not take long for the disease to consume him. In and out of hospitals, wound care, feeding tubes and watching the big strong going to live forever Daddy fade away. He would beg us to place him in Hospice facility but nope not even an option. All those years of him taking care of me and my sisters... it was our pleasure and my reward. My dad did many great things in his life, but he shined brighter from December 15, 2005 to March 9, 2006. My mother also began to fade on March 9th; part of her went with my father.

The roll continued as caregiver with my mom. Mom had experienced carbon monoxide poising and there was some slight brain damage. Taking care of my mom was never dull, and always changing. Spending every free moment taking care of her and her needs.... and she believed shopping was a need.... so away we would go.... My family vacations always included her, road trips were pretty-wild. My mom had lived through breast cancer, lung cancer; liver cancer, thyroid cancer, lymphoma, carbon monoxide and food poisoning and COPD; each bout would take on new caregiver rolls. She had 2 house fires, the last destroyed her home and well 'the next step was to move her in with me and my family, which included and 11 year old daughter. My mom became a family affair.. . everyone had small jobs to help with Nana, and everyone did it with a smile and so much love. The little house next door opened up and mom wanted her freedom, November 2009, Mom regained some independence and moved into her own home. It was great, I could pop in all hours of the day and night. .. the late nights were to clean her house, do her laundry and anything else I could not let her see me do... her independence was my utmost priority. The only thing I did not like doing was filling her med box for the week... about 20 different meds, it brought me down to my knees... but she was mom so I plugged away.

In June 2009 after a trip home to Maine, my mom began to change… I knew sometime was not right. Mom was placed in the hospital and then rehab with what was being treated as bronchitis that never seemed to get better. The middle of July, mom was diagnosed with lung cancer. I knew that is was more than just the lungs, I had seen her change mentally and physically over the past month or so. We brought her home and began the round the clock care. The child like look in her eyes always made me cry, never in front of her, but cry I would. I knew my superhero roll was corning to an end. She would be so embarrassed when I would have to clean up her messes, or get her in the tub, change her bed linens and her nightgown. I would always brush it off with a joke. She was my mom and nothing would change that, nor would I allow anything too. After many long and wonderful months of caring for my Mom she passed away on July28, 2010. My caregiver roll carne with a lot of tears and heartache, but the joy and love greatly outweighed the pain. People always ask me if I had to do it all over again would I have done things differently... No I would not... the love that I have for my parents did not leave with' them, it continues to grow more and more every day. Being a caregiver comes with a whole host of emotions with love and honor being the greatest of all.