Family Caregivers Share Their Personal Experiences
VITAS Healthcare asked family caregivers (defined as anyone who provides physical and/or emotional care for an ill or disabled loved one at home) to tell us about their personal experiences.
We wanted to know what they've learned and give them an opportunity to share their discoveries with the growing community of family caregivers. In exchange, we offered spa gift card prizes to the top three entries, as decided by our judges.
Below you'll find the top three entries, along with ten honorable mentions. We hope the words of these family caregivers will educate and inspire more family caregivers in the loving work they do every day.
Top Caregiver Entry
"My Henry was a happy camper"
Written by Mary Chavez
My name is Mary Chavez. I was a caregiver to my husband for 11 years and I am now a volunteer for VITAS Healthcare.
In 2001 I became a caregiver overnight. My husband suffered a massive stroke and was left paralyzed. I took an early retirement and became a 24/7 caregiver. I did not hire a person to help me; I felt I could do it alone, and I did. About two years into it, the caregiving was beginning to take its toll. After lifting Henry repeatedly, my back was in pain and my leg muscles were burning.
Due to my own health problems, I was putting Henry in a corner (so to speak). I noticed Henry was beginning to look depressed. I talked to the doctor about depression and he was able to help with medication. I began to educate myself and found a van made for handicapped passengers (not only to transport my husband, but also to save my back). I purchased a handicap van, and that purchase was worth every penny. My Henry was a happy camper because he was being included in every way.
Here are a few ideas I found helpful:
- Rest is very important. A caregiver should try to rest when his or her patient is sleeping or watching TV.
- Handicap magazines/catalogs are helpful. Look for items that can help you with your patient.
- Try to do things for yourself, like having lunch with a friend, getting your nails done or getting a haircut.
- If possible, take your patient outdoors to sit on the patio or go for a long walk down the street of your neighborhood.
- I read books to my husband. He loved history and, to tell you the truth, I learned things I never knew.
- If you are doing the wash, cooking, changing sheets, etc., place your patient in the same room you are in and let him or her feel included in what you are doing. Actually, let them help you with small things if they’re able.
- Take your patient outside to enjoy the sun or shade as you water your plants or pull weeds.
- Most important, ask God for strength, patience, love and contentment. Leaning on God made things so much easier for me.
I was asked if I regret taking early retirement to take care of Henry. All I can say is, as we stood at the altar exchanging our wedding vows; we made a commitment in front of God and to each other. As we say the words “for richer or poorer, in sickness and health, until death do us part,” do we really know what it means? No, we do not know until we are put to the test of love for our spouse.
It says in the Bible that love is patient, kind, gentle, caring, slow to anger, etc. My life with my husband was not perfect. We had problems like everyone else. We made it through 53 years of marriage before he passed. No, I have no regrets…. It was a great joy and a privilege to be a caregiver to my husband.
After my husband passed, I applied at VITAS Healthcare and became a volunteer. I have been volunteering for three and a half years, performing various office duties. Volunteering has filled the hole in my heart. I have made wonderful friends, and it keeps me active. Caregiving was very special to me, and volunteering was one of the best things I did for myself. It is nice to give back.
Runner-Up Caregiver Entry
"I never would have asked for this life, but I am a better person for it."
Written by Jane Parks-McKay
Dateline: Nine years ago. My life changed 100 percent, 24/7, overnight when my husband was injured at work with a brain injury. Little did I know what caregiving would become.
My first thought was, this must be pretty easy. The older gray-haired ladies I'd seen caregiving always seemed so calm and serene and happy taking care of their husbands. I thought I would have time to learn the guitar.
Was all of that ever wrong! The advocacy work that was required of me in the medical and insurance fields was phenomenal. I went from knowing zilch about any of this to becoming a semi-expert in a short time period, but it was time consuming. We were told by the doctor that my husband would recover in two weeks. Three months into it, I was tearing my hair out.
Then I sought help from a local caregiving agency. You cannot do this alone and I learned to ask for help, and to create a community of helpers, friends and those to support us through this. My husband and I learned to advocate for those with traumatic brain injury. I learned to advocate for those in family caregiving.
As for me personally, after nine years of this I've learned to be stronger, to cut through to what is important and to let many things go. I've learned how to be better organized and more focused. I've also learned who my friends are, and I can recognize a fellow caregiver a mile away. I have learned empathy. I would never have asked for this life, but I am a better person for it. And I love my husband more than ever. He still makes my heart go aflutter when he walks into the room!
Runner-Up Caregiver Entry
"Strap in for the ride"
Written by Pamela Rivers
When I started blogging, I dubbed myself a “master caregiver.” Not because I was by any stretch of the imagination a master at it when the role was bestowed upon me. It was more the irony of it, or putting it out there to the universe: that’s what I was going to become as I took care of my mother, who had Alzheimer’s.
For those of you who are trained for the role, you already have a leg up. For those who, like me, became a caregiver unexpectedly, strap in for the ride.
Being my mother’s caregiver definitely had its challenges. There are accidents. You find yourself always doing laundry, giving medication, scheduling appointments—scheduling everything. But I would never trade it in for the world. Oftentimes you feel as though you are behind the eight ball, so to speak, that you’re reacting to situations instead of proactively acting, and that it may take a moment, if ever, to get ahead of the caring curve.
It’s in those rare quiet times that you have to prepare for the next day and week, that you need to make your to-do list, the doctors list, contact list, shopping list and what-friend-can-I-call-today list. Caregivers have little to no “self” time, and when it came to planning my life’s future, that ceased. I didn’t want to think of future things, because I was unsure of what that would be for me. I had to learn (with the help of my therapist) that at some point I had to be selfish with my time.
You need to think about something that you want to do and try to find a way to do it. Whether it’s getting your hair done, going for a manicure or going for a walk, see if you can put something in place that will give you free time. Look into a daycare facility, respite or a good friend who could give you that free moment.
You also have to learn how to be fast on your feet and, yes, at times, think unconventionally. I triumphed at 10-minute grocery shopping and doing the “Target 5k” (no such thing) in record time. And, boy, did I shine when handling a big oops moment with Mom and finding out how great the Home Depot can be when you need supplies. Yes! The Home Depot!
As a caregiver you must have compassion, but you can’t get rattled when accidents or unexpected things happen. Caregiving is a true test of heart and a true test of physical and mental will. It can be tough and often is not rewarded. And yet it’s one of the most rewarding roles. In the midst of my journey dealing with Mom’s Alzheimer’s, she forgot many things. But she never forgot to say thank you.
Honorable Mention Caregiver Entries
"My emotions took roller coaster rides"
Written by Penny Erwin
My 50-year-old daughter has metastatic breast cancer (MBC) in her brain. She first had breast cancer in 2004 and underwent a bilateral mastectomy and chemotherapy. In 2009, she was diagnosed with MBC in her lungs and adrenal glands and had six months of weekly chemotherapy. I was there for her during all this.
In 2011, after a very bad seizure, she was diagnosed with four brain tumors. After full brain radiation, she was able to return to work as a teacher that fall, but soon she had more small seizures and several cyber-knife treatments. I was there for all of this.
In 2013, she had two brain tumors removed surgically, six months apart. This is the year I began caring for her every weekday when her husband was at work. I learned that every day is a gift. I also learned how physically and mentally draining being a caregiver is. My emotions took roller coaster rides, and still do.
Seeing your grown child become like a baby again is both frightening and so very sad. In all this sadness, there is a sense of love and family that has bonded our whole family as we take this journey together, the good and the bad. My faith has been the thing that has strengthened me.
As I write this, she is still with us, and I hope I am her caregiver for many more months! VITAS hospice has been wonderful. We are so blessed to have the caring and loving nurses, aides, social workers, volunteers and chaplains. Without these talented people, I would not be able to do this. I thank God for the opportunity to spend these days with my precious child. My love for her has been my driving force, but the rewards have been life changing. I know the value of life, and how fragile life is.
"This is for Mama"
Written by Sigrid Eriksen
No offense, SpaFinder.com, but I am not doing this for the gift. This is for Mama.
My mother has buried a husband, a son and a grandson. Widowed at 32, Mama dedicated her entire life to the four of us without a thought for herself. She managed to put us all through college with no student loans.
Mama became frail in 2012, so I moved back home to care for her full time. She fell in January of 2015, breaking her hip in four places. She was home two weeks when she fell again, hitting her head. My mama has been in a skilled nursing home since January 15, 2015. I have missed 10 days of seeing her at least four hours every day.
I am the only daughter. My fondest memories of my life are the bus trips we took together to Charleston, SC, and Williamsburg, VA, every year. But due to Mama's dementia, she doesn't remember a single trip. She doesn't even have memories to look back on; the dementia has stolen even her memories.
I have found that at this point, the only thing I can do is just sit with her and listen to whatever she says, hold her hand and tell her I'll never leave her alone. Time is the greatest gift you can give someone. She's given me 56 years of her time. She is 85. There is nowhere on this Earth I would rather be every day than with the woman I admire more than anyone in this world. She is as strong as steel and as soft as a pillow.
People tell me what a wonderful daughter I am to see her every day. I politely tell them that if I am what they say, it is because I had the greatest teacher of all: my mama, my best friend and my greatest cheerleader throughout my entire life.
I love you, Mama. Our time is a bond only a mother and daughter can share. Love, Sigrid
"Nature, music, family and religion"
Written by Ligaya Ramsey
- Love, patience, sacrifice, nurturing and care, with a touch of humor.
- The ability to read through body language, be respectful
- Commitment, with careful planning and goals
- Nature, music, family and religion
That was all that mattered to me when taking care of my mother. I called her “Inang,” meaning “mother” in the Philippines. She was a typical Filipina, reserved and modest. She would never be a candidate for a nursing home, just because of her unique personality. I decided I would take responsibility for my mother's well-being, with my sister's blessing.
I worked with children for almost 25 years, and taking care of my mother was rewarding for me. Though there were home healthcare workers to attend to my mother, I still watched and took care of her and wrote memos and plans of care for caregivers. It was a 24/7 commitment and I never thought of retreating.
I loved my mom so much. During spring and summer, I planted beautiful flower gardens; I had a hummingbird. She saw the birdbath, a squirrel swinging in the pine tree limbs, the birds, butterflies and wild rabbits. I tried to bring her park-like surroundings. She loved to read the Bible by the window. She looked outside for cars and people passing by. She listened to her favorite hymns and country songs of Jim Reeves, and watched a collection of Shirley Temple’s old movies and her favorite, "Old Yeller."
She was not fond of snow. At night during the winter I kept her warm with an electric blanket rolled in a long pillow close to the wall. She had different shapes of pillows on her sides, between her knees and a tiny soft pillow she love to hug. I would turn on her favorite Jim Reeves country songs and I always told her “I love you” during bedtime.
On her 99th birthday, she was feeling weaker. I moved her bed near the window, where she always liked to sit. On the 13th day after her birthday, the nurse informed me that my mother had a few hours to live. I called my sister and everyone talked to my mother. With her last prayers with my sister, my loving mother went to the Lord peacefully.
I feel the grace and blessing of God for giving me the chance to serve my loving mother. I am at peace, though I miss her.
"My best evaluation ever"
Written by Shirley Hutton
Caregiving for a 94-year-old lady who lived at home, by herself, was quite an experience. I did "standby" while she showered. She taught me to make chicken cacciatore. I mopped, vacuumed and dusted for her. She taught me how to identify one flower from another.
One day, I received a call that she had had a stroke and had been taken to the hospital. With just a little investigating, I found out where she was and paid her a visit. One whole side was paralyzed and she barely looked like herself. Her family said, "Mom, Shirley's here." I slowly leaned down and kissed her on the cheek. She worked very hard to whisper, "We sure had a good time."
She died 10 days later, but I'll never forget that poignant moment when I got my best evaluation ever.
"I will always be a caregiver"
Written by Karen Parsons
As I look back at my life, I realize that I was always meant to be a caregiver in one way or another—as a secretary or server or for my own family … always. My son is 31, had a cancerous brain tumor at 10 and lost his pituitary functions. He’s been on medicines since then. At 25, two small strokes. Now dementia.
My husband had several lumbar and cervical surgeries. Then two short comas and seizures. Now a nursing home. I am still his caregiver, even though it is in an advocate mode. You never stop giving care to your loved one.
What I have noticed in the last two years is that in a nursing home, CNAs and nursing staff should not assume that each resident can be treated the same. One instance for me was in the shower. I was asked to come and listen to how my husband was cursing and screaming at the staff during his showers.
He is always in pain; even his skin hurts. He can't walk and has to lie down for his shower. He holds onto the side rails so tightly. When I looked in I noticed he couldn't lay his head down because of all the hardware in his neck. I suggested a pillow. It was done, he relaxed and things go much smoother now. Instead of my husband being the problem, it was the way he was being taken care of.
I have caregiver burnout and have been told to relax. But I will always be a caregiver ... always.
"Anger, sadness, worry and, my favorite, a purpose"
Written by Roberta Ann Feraro
Caregiving is a journey that no one knows about until they do it. My mom is a sweetheart. She is going to be 96 in March. She cannot walk and suffers from depression. I am her only caregiver. She really failed when my brother died four years ago.
There are a variety of challenges. They come suddenly, like a fall or a pain. They also develop over time. I have been a legal expert, a financial agent, assertive, loving, frustrated—and had a bout with breast cancer. I take care of my husband, the house, the cooking, cleaning and so on.
But I am not alone. I have spoken to other caregivers who display a range of emotions: anger, sadness, worry and, my favorite, a purpose. The best thing to do is to speak with a social worker and find a geriatric doctor who comes to the house. This has been a blessing for anything from a simple check-up to a flu shot to updating legal information and discovering the variety of options for additional help.
You must be flexible. We all have different levels of caregiving and every caregiver’s situation is unique. It is a full-time job, so you will need training, education and, most of all, support! The important thing is to take care of the caregiver. So my husband and I go out on a date one night a week; we take a vacation now and then. There are several facilities that offer respite care for the adult or child you are taking care of, especially if you are going out of the country. My mom is Catholic, so she receives communion every Sunday and First Friday. She likes to draw, play cards and exercise. She has some dementia; not bad at all. We have a DNR (Do Not Resuscitate order) because she wanted a living will. I have a dentist who comes to the house, and an eye and foot doctor. It has made all the difference.
Mom lives with us, so at times it is hard, but it is beneficial in many ways. I worked in nursing homes, and they just are not like home. So we decided to keep her with us. I am glad I made the decision.
I hope this has been helpful to caregivers out there.
"From being a caretaker to having one"
Written by Martha Combs
I was a caretaker for many years, staying all the time, one-on-one, with many Alzheimer’s ladies. I learned mainly to treat them with kindness and not to argue. If they say something not exactly right, let it go. If you try to argue, they will get upset, and why should it matter?
My ladies were very sweet and I loved them. My mother was one of my patients; she thought I was her "Sweet Mommy."
Now I am 81 and on hospice, and these ladies are very nice to me!
"The Lord gives me the help I need"
Written by Darlene Oliver
Over 22 years ago I moved from the Washington, DC, metro area to come back home to help care for my dad, who had Alzheimer’s disease. It was a part-time job, as I had to have a full-time job to provide my support. It was hard to see how devastating Alzheimer’s disease can be. There were violence and run-away issues. When one of those episodes happened, it simply drained me.
Now, my mother has advanced dementia. She fell and broke her hip recently. After three months of rehab, I decided to provide long-term care for her. She is now home and I can fully know what is needed for her: transfers, cleaning up accidents, use of a wheelchair. It's truly difficult. But the Lord gives me the help I need to care for her. Friends are a necessity. Talk about the issues and get encouragement. It's a true learning experience.
"Love really does prevail"
Written by Valerie Hoffman
I met my father-in-law when I was 16, the same year my father left us. So this man became my true dad. He passed away this year at the wonderful age of 100. He was a World War II vet, but he was much more than that. He was a father, grandfather and great-grandfather by the time he went to heaven.
Last Thanksgiving he met his great-grandson for the first time. He was a very judgmental man, and was newly informed that his great-grandson was bi-racial. We all held our breath in anticipation of our daughter’s arrival to our home and their eventual meeting.
As my father-in-law slowly got out of our car, he stopped, looked at his granddaughter, then at his great-grandson, Kennon. He held out his old arms, embraced them both and said, "Why would I not think, Granddaughter, that you know the choice you have made, as you are a very intelligent young woman, is the right one for you? I wish you nothing but the best."
We all breathed a sigh of relief and proceeded on into our home to have the most blessed Thanksgiving ever. The day was sprinkled with joy by the genuine connection between grandfather and great-grandson, and we all learned that love really does prevail.
I could have made this article about his failing health, the many visits to the ER and his last days in a facility. But I choose to remember him by the lesson of life he taught us all. A person can change and choose love and acceptance after all. I choose to remember him and share his best moment with you, the reader. He was, and will always be, my favorite cowboy.
"Life can change in a matter of hours"
Written by Julie Madison
This is for my Aunt Julia. She is currently taking care of my uncle, who has three brain tumors, Glioblastoma Multiforme inoperable. She takes care of him pretty much 24/7 and doesn't get much time to herself anymore. She breaks down in private in order to present a strong front to my uncle. She could really benefit from some personal time and relaxation.
She has been amazing and takes wonderful care of my uncle. She suffers from her own medical issues as well, but doesn't complain. She and I have had long talks about how this experience has made her appreciate life and how short the time we have here on earth is and how we must make the most of each and every moment, because the lives of so many change in a matter of hours.
Especially her life with my uncle. He got weak from working out in the yard and felt as if he was going to collapse. Earlier he couldn't remember a simple gate access code that was four digits and a very easy combination. They rushed him to the ER, they did an MRI and found the tumors. So within hours he went from working in the yard and not knowing he was even sick to an MRI that changed their lives forever. He has had chemo and radiation, but the tumors are still there and the prognosis is bad. I would love for her to have some time to regroup and relax.