For too long there has been silence about caregiving.
Reading other's stories can help you feel less alone.
Sharing your story can help others just like you.
Look. Love. Lift…
LOOK: I’m a mother of three daughters and a grandson. My middle daughter has a genetic blood clotting disorder. My mother is on dialysis. She is constantly falling and hurting herself. My sister is paralyzed on her right side due to two stokes she had a year ago.
LOVE: Caregiving has given me patience and understanding, there are good and bad days. I try my best to be positive when they are feeling down. I wouldn’t trade it for anything because it also gives me valuable time and memories I’ll never forget. It brings me great joy to spend time with my family and care for them. I do have to listen and try to find solutions in solving their problems while making them comfortable. I plan family outings a lot so they are able to enjoy themselves. I am very nurturing to their needs and concerns - I wish I had more time in a day.
LIFT: Caregiving can be hard at times, but it’s very rewarding. Being a great listener and showing empathy and patience is the key.
- ALINE, JuLY 2019
LOOK: I take care of basically anyone who needs help.
LOVE: Where I live there’s over 100 homeless people. Although I have 6 kids its not right to walk pass knowing you can brighten someone's day just a little bit. I have an uncle who had a stroke and he came home today from hospital. I’m working 2 jobs but barely surviving still. Everyone needs a helping hand sometimes. Got to put pride to the side. Ask…
Caregiving makes me feel human.
LIFT: Be patient and keep doing what’s right. Things that have helped me? Love. Being social. Money. Having a good heart.
-CHRISTOPHER, July 2019
LOOK: When I met my wife she was a college softball player. Healthy and strong. While we were dating she was diagnosed with a disease called Lupus. We dated for six years and were married for eighteen. It was the last eight years that were the hardest.
LOVE: In 2008, She was put into a coma for thirty days due to respiratory failure. It took a year for her to recovery. Helping and watching her recover was so inspirational. The week she went back to work our only son, who was five at the time, was diagnosed with Type 1 Diabetes. Due to the stress, my wife ended up losing her kidneys and put on Paratinel Dialysis (at home). The work of the dialysis was nuts. Bags at night, bags in the morning. Constant sterilizing. She was in and out of the hospital constantly. It made the Type 1 Diabetes seem like vacation. The worst part of all of it was watching her deteriorate and losing my wife to the medication. She just wasn't herself. Super angry and tempered. Rightfully so. She was miserable and getting worse by the day. She ended up on oxygen 24 hours a day and the last few months on life support.
I prayed for her to pass away and then she did. The pain of watching is gone but many scares remain. I struggled with substance abuse for awhile. Its been three and a half years and it seems like yesterday and also twenty years ago. My son and and I are now thriving. Holding the memories and living in honor of the bravest and strongest women we know.
As a caregiver I felt selfless, unappreciated, alone, overwhelmed, and exhausted.
LIFT: I wish I had blocked off some time for myself - done some sort of exercise, meditation, slowed down and not try to do everything for everyone - it’s important for you to do this.
I try to speak to groups and individuals as much as I can who are caregivers. They need hope. They need support!
- Gregg, May 2019
LOOK: I am caring for my high school teacher, and we reconnected when my children started going to middle school - I was excited about that.
LOVE: Caregiving has made me feel like I can understand what she is going through and how she is feeling. I wish I could take the pain away and give her the strength that she needs to do daily activities. It has helped me to practice listening, being understanding, and being more empathic.
LIFT: My advice is to take time to listen and understand. And more caring.
- otelia, JULY 2019
LOOK: I’m currently 19 and I’ve been helping my mom with my baby sister since she was born when I was 15. My mom has been trying to get a good job ever since she lost her newspaper delivery job due to a transfer in companies.
LOVE: All throughout high school I skipped classes and I would stay home to take care of my young sister and now I do it on a daily basis for free just to help my mom. I love both of them with all my heart and I’m going to take care of both of them until the day I can no longer take care of them.
Caregiving makes me feel pretty warm, I love taking care of my sister and I really love helping out my mom. These are two really important people in my life and being the person they go to when they want or need something makes me feel amazing.
LIFT: Having lots and lots of patience has really, really helped me. I used to get so frustrated because I couldn’t understand why my sister had become my responsibility as a teenager but then I realized that she wasn’t a responsibility, she was my sister and I wanted to help her grow as an individual! If you’re young and you feel like what you’re doing isn’t necessary, you’re wrong. You have a choice to help out, it’s not a requirement. I recommend taking time to yourself when you can so that you don’t always feel like you’re the only one that’s taking care of the child.
Also, I knew that being a mom is really hard. I don’t have any kids of my own but being a caregiver for an infant-toddler makes you feel like you’re raising the child. It’s been difficult but I love that little girl so much and sometimes things are so frustrating but that’s NORMAL for a mom. Mom’s are really hard workers
- ASHLEIGH, AUGUST 2019
LOOK: I am a caregiver for my disabled mother and husband plus a full-time worker. I just enrolled in school too and I help with my grandson. My mother became disabled after a hip surgery and a fight with cancer. She has been through so much the last 8 years, she is the strongest woman I know. She is in a wheelchair and has to always have a person with her being able to take care of her. My husband is disabled due to chronic migraines and deteriorating back bones.
LOVE: Keeping her home with help is the greatest reward. I'm blessed to be able to take care of her and spend time with her at home in a setting she is comfortable in. The greatest reward is caring and loving for those when they need you most.
Caregiving has made me feel proud and it has been so rewarding to know I'm able to help my loved ones be comfortable at home. I wish I would have realized earlier on the appreciation that the ones I care for have for me.
LIFT: Practice knowing when you need help and accepting the help. It helps having a calendar and keeping a schedule as far out as you can. Keep good records and schedules. Also it's okay to become overwhelmed - it will happen sometimes just remember the big picture and joy that comes from what you’re doing. There are people going through what you are - you are never alone.
- Familyfirst4, JUNE 2019
LOOK: My name is Amy, I am 59 years old. I live in TN. I am a caregiver. I was a caregiver to my mom who had dementia and my husband who has a mental disability all the while working a full time job. My mom was in the nursing home from 2010 until she died in 2016.
LOVE: I was there everyday to make sure that she was being taken care of. My husband was in and out of mental health facilities from 2005 until 2018. He is at home now and I am a caregiver to him. My son did help me until he died of a heart attack at the age of 36 in 2014. I have really learned to depend on and trust God. I have siblings and friends, but I still felt like I was all alone in life.
Caregiving has made me feel sad, lonely, and angry at times. Other times it has made me feel like God has given me great strength. I wish as a caregiver that I had a lot more patience, and a lot more help. And that I could retire from my full time job.
LIFT: Things that have helped are when I joined an exercise class, reading my Bible, talking to a member of my church family, praying, and taking a break.
Remember to take a break to care for yourself. Talk with a Pastor or church member. Pray.
- Amy, July 2019
LOOK: I am very new to the caregiver roll. My husband had a stroke March 25,2019 and returned to our home on April 17,2019. I am in the process of finding my footing with this new stage of our lives.
LOVE: I’m figuring out the emotional aspects as well as what and how much I should do for him or let him do for himself without taking his dignity away. I have failed recently not anticipating the what-ifs. Since then I have had to make more precautions around the house. To date all I have is home health and realize I need more. We have one child who is helping out as much as possible. No other family members are close so it is the two of us navigating the storm. The balancing of work and home is complicated at best. I know it will get better as we figure this all out.
Caregiving has made me feel… exhausted, emotional, scared, inadequate, joyful for the good days and hopeful. I wish that as a caregiver I had…a manual with all the answers.
LIFT: I can't give any advice yet as I am so new at this, I have not really had time to breathe. I cant let my guard down as the pieces will all fall apart. I know in my heart we will figure this in time.
- Teresa, May 2019
LOOK: I am a full-time wife, mom, and a full-time certified nurse assistant at a state nursing home facility.
LOVE: Being a certified nurse assistant is a blessing to me because I enjoy being around the elderly and it reminds me of my grandparents when they was living. It has helped me take care of people that don’t have anyone to come visit them or don’t come as often as they want to. As a caregiver/CNA I hope I can make a difference in just one life at a time to make a legacy for my children and grandchildren.
LIFT: My advice to other caregivers is to be compassionate. Don’t hinder them from doing what they can do by trying to doing it all for them just cause you are in a rush cause that will make them go down hill fast. Be loving and caring.
- TaNIA, AUGUST 2019
LOOK: I am a nurturer to quite a few people and have been this way most my life. My eldest son is hardcore schizophrenic and needs a bit of emotional as well as monetary support and instruction. There are also many people that look to me for advice and help on a daily basis.
LOVE: Whether it be food, spiritual guidance, emotional support, clothing, housing, help to clean their home, pets, their own hygiene needs, or just a ride to get there errands done, I try my best to be available. It’s all part of being an empath and loving with a heart like Jesus. Yet it’s a continual struggle for resources and time as well as energy. I am disabled myself. The Lord always clears a path to provide though.
Being a caregiver - it’s who I am. I love being in service to others and seeing that I can make a positive difference in someone’s life. It is what gives my life meaning.
There are a lot of traumas you must overcome being an empath. My soul salvation is in looking to God for strength, energy, patience and answers. I also rely on friends to give me straight honest advice to make sure I’m staying on track. It’s hard to be objective sometimes when you’re so emotionally connected.
The world needs more of us out there loving unconditionally. To be non-judgmental and love with arms wide open. There are so many children needing that one stream of support and guidance. There are not enough of us reaching out to them and the mentally ill.
I wish that they would all be success stories. That there wouldn’t be so many relapses! That I could have enough resources to clothe and feed all the homeless. And end starvation and addiction in the world.
I wish that I had the perfect recipe for world peace.
LIFT: I promise you will feel your calling and the sense that your life is worthwhile every time you see someone struggling, then smile and succeed. To know you’ve got them in a safer place and helped to give them a fighting chance at a better life. To know you helped them overcome an obstacle or become self-sufficient is the greatest feeling in the world and gives you motivation and inspiration to help even more.
- DELORIS, SEPTEMBER 2019
LOOK: It started on December 8, 2006, two days after my husband was hit by his 17th improvised explosive device in Baqubah, Iraq. The call came in because his rear commander and chaplain were at my house in NC while I was traveling to see family for Christmas. Me, our three children and two dogs had just walked through the door at my mom and dad's house in Texas when the call came. His commander wanted to send a car with the required personnel; my husband was dying from a penetrating brain injury and was enroute to Germany. I blacked out only to come back to yelling over the phone. I refused assistance of men I did not know and refused to believe I would lose my best friend since I was 16.
As the calls came in it became a flurry of demands to get ready to fly to Germany to see him for the last time. However among these calls I received one from a close family friend and chaplain in country with Bill who stated "Don't listen to them. I stood over Bill during his initial surgery at a forward operating base and the neurosurgeon believes he will make it". From that point I refused all requests to fly to Germany. Bill died at least three times that night; I learned later in our journey. But he was always a fighter and even to this day he never gives up.
The medical team in Germany stabilized him and flew with him state side. That was December 8th. We landed at the same time in Maryland but it took several hours before he was stable enough for me to be with him.
My heart was shattered. He was hard as a rock and swollen all over his body from the blast pressure which not only sent many pieces of shrapnel into his right frontal lobe traversing through to his left parietal lobe but literally broke the cells in his body. There were tubes everywhere, breathing for him, feeding him, giving medication and blood products, draining the wound in his head. I did not cry. I could not cry. I had to now be the warrior for him that he has always been for me. I asked questions and held his hand. Spoke to him and did not leave his side that night.
He finally woke up. He always knew me but not his children. It took a week just for his lungs to work on their own again. Four weeks for him to be able to swallow again, 8 weeks to walk.
He had emergency surgery to remove a large piece of shrapnel that was sinking into his spine which left his right side weak and then an aneurysm coiled over his right eye. He almost died because a neurosurgeon did not believe me or a nurse that his new onset of a headache was wrong. The shrapnel had nicked his CSF sack and was filling his brain with fluid. I fought with that surgeon until he agreed to imaging that showed the fluid compressing his brain by 25%. That was the first person I had fired in our journey.
Today you would not be able to tell the trials Bill has overcome. You would think he was just rude, crude, mean or funny.
LOVE: I have fought the military with the help of some wonderful people. I have fought the VA. I have stepped into senior NCOs faces as well as officers. I have found a strength I never thought I would have but now I am tired because after all of this- the wins, the progress, the good times and the bad. I am slowly losing him and there is no longer anything I can do because it is his brain itself that is giving up and I am drowning in sadness in silence because I never want him to feel like he is a burden. For out of everyone I know, he is the one that deserves to be held high and to feel a quality of life that a true hero should have. I wish we could find a cure.
Caregiving has made me feel strong, determined, resourceful, angry, hopeful, desperate, confused, guilty and alone.
LIFT : Take the time for yourself. Yoga, crafting, reading and music. I know you feel guilty for doing it but if you burn out from personal neglect who will carry on for your loved one?
- Janelle, August 2019
LOOK: My name is Debra and I am 56, soon to be 57. For the second time in my life I am in a caregiver relationship and want to be better prepared this time with my 67 year-young husband than I was when I started taking care of my mother in 2010.
LOVE: My mother, God rest her loving soul, passed away in my home in the summer of 2013 from Lewy Body Dementia. I was caring, devoted and loving BUT.....I did loose my patience with her on more than one occasion and I will live the rest of my years with those regrets.
I did not physically hurt her, but lost my temper & yelled at her several times during the last year and a half of her life. She did not deserve that and I don't want to do that this time around with my husband. I don't want more regrets to live with, I already have my fair share.
This time I will accept more help, learn more about what is going on with my husband emotionally, medically, mentally & physically.
Right now my husband and I are homeless. We have recently been able to stay in a Motel 6 rather than the horrible homeless shelter here.
Caregiving has made me feel hopeless, frustrated and annoyed, but it has also made me feel humbled, thankful and loving.
I wish I knew ahead of time everything I would be up against. I also wish that this time I have no regrets!
LIFT: You can mess up and have regrets and also pick yourself up and try and do better. Each day is a new chance to help.
- Debra, September 2019
‘We finally had sex after 6 months of not feeling any love. Helped me remember all the good times and what I love about him.' - K.P., Alabama
‘Sometimes I can see the gratitude in my mom’s eyes and for a split second I know that she knows me and that I am caring for her like she deserves.’ - Ann, Age 56, Coral Gables, FL
‘I have a friend who is also taking care of her husband right now and we text each other everything we wish we could scream at them. Keeps us from actually yelling and has the side benefit of relieving stress- you know, swearing is good for the soul!’ - Sylvie, Age 57
‘Remembering this is not his fault makes me have more empathy.' -Jamela, Age 32, Indiana
'Drove around for 10 minutes today with the music blasting and the window down. It gave me some energy and put my head in a much better place. When I got home I was able to be much kinder’ - Margaret, age 63, New Orleans
‘I am so angry that I never come first. I am sure I am depressed but I don’t even have the time to breathe let alone see a doctor for me.' - Doris, Age 72, Colorado Springs
‘I want to run away. Almost every day I think about running away and hoping someone else can take care of my father. I can’t live with that guilt though so I stay.' - Dan, Age 67
‘We are actually doing the bucket list thing. Every time I help my dad check off one of those things, I realize that this is my purpose right now.’ - Gavin, Age 28, Oregon
‘Am I allowed to say that what I often hear in my head is myself screaming “This sucks and I am so tired and I don’t see this ending”? I feel so bad saying that but it’s true’ - Sunshine, Age 88, Philadelphia
‘Sometimes I get so mad at my father because he says the same thing over and over and over again and it makes me so frustrated – and then I hate myself for hating my father, when all he’s ever done is be good to me, and it’s not his fault he’s losing his mind.’ -Maria, Age 46, New York
‘We haven’t connected in any real physical way in over a year. I want my wife back the way she was. Will we ever have sex again? Is something wrong with me that this is what I am worrying about while she is sick?’ - Gloria, NYC
'Honestly, I'm not sure what to say, it's all just so hard, sometimes I forget I even have feelings, it's like I'm numb to it all. I just see this as going on forever and I'm never going to get out. And it's so expensive, and takes all my time. All my friends have moved on, are doing stuff with their lives, but this is my life now. I think I might be depressed but but it's nothing compared to what my aunt's going through. I do it because I love her and I can't imagine stopping or when she's gone. But yeah, it's hard.' - Desiree, Age 25, Ohio