The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a neighbor, either now or in the past, please consider writing a comment below. Links to your own blog or videos are welcome — or feel free to email me directly: sfox (at) pewinternet.org.
One challenge we face in telling this story is that lots of people don’t think of themselves as caregivers. They are simply helping out, doing what needs to be done. Maybe the role crept up on them, as their parents got older. Maybe the role was thrust upon them, when a neighbor who lives alone fell ill and had nobody else to turn to. That’s why we don’t use the word “caregiver” in our survey questions, but rather ask about activities and relationships.
Another challenge is that, at first glance, caregiving doesn’t appear to have much to do with the internet. So why focus on this group when tracing the social impact of the internet? Three reasons:
- Caregiving has changed. It’s not just bathing, dressing, and feeding anymore. It’s complex home medical care.
- Caregivers are wired. They are more likely than other adults to use the internet, especially for health.
- Caregiving is growing. In 2010 we found that 30% of U.S. adults cared for a loved one, either an adult or a child. It’s a bigger number now and we are only at the beginning of a sobering age wave.
Consider: People ages 65 and older represented 12.4% of the U.S. population in the year 2000 but are expected to grow to be 19% of the population by 2030. Further, medical progress has saved and extended many adults’ and children’s lives, but often with an increasingly complicated home regimen of special diets and medications. Suzanne Mintz of the National Family Caregivers Association put it well: “This is a brand-new phenomenon because people used to die quickly. People die now from things that go on and on and on…”
In the video below, Suzanne talks about how her life’s work is to give caregivers a sense that there are other people who share the same feelings, to connect them with resources, and to support them in their work. Our upcoming report will provide some benchmark data about how that’s going for caregivers with internet access.
I’m collecting more resources related to caregiving in a Storify — kind of an inspiration board for people who are tuning in to this story of demographic change, medical progress, and love.
Again, please share your own story in the comments if you can shed light on caregiving.
Susannah, Indeed – I’m happy to share. I’m a caregiver to my daughter – with her 18 different specialists, her after school therapies and her school program. She is a miracle baby, having survived her twin’s demise in utero and then 2.5 months in the NICU. She is undiagnosed genetically but we ‘hang out’ with the folks in CHARGE Syndrome – via listserv and facebook group. It is the diagnosis that covers many of Alexis’ issues. We have gotten a tremendous amount of support from these ‘virtual’ friends, the facebook group has 3066 members and each day more are added. I am also a member of a face-to-face parent group of kids with medical issues. It is helpful to chat face to face once a month with others who go through the same struggle.
Thank you, Catherine! I knew you were an online information and support maven, but didn’t know (or remember) that you also went to an in-person group.
Susannah, I also attend the CHARGE Syndrome Conference every other year – it’s great to meet parents and kids from the US and around the world. In 2011, there were 800 attendees.
I am a caregiver to Case, age 6, with Hunter Syndrome (MPS II), 10 doctors, 2 therapists, a weekly infusion, and 2 1/2 years into a clinical trial. An insight I would have to share about caregiving to a child with a rare and complex medical condition is that it is often “community caregiving” in a way. Our rare community helps each other diagnose, make treatment decisions, fight medical/services/educational battles, share victories, and shoulder sadness and loss through forums, private FB groups, email, phone calls and otherwise. “It takes a village” takes on a whole new context in our virtual community, one we often daydream about becoming our IRL MPS commune.
Incredible – thank you! It’s hard to think about what it would have been like for you pre-internet.
I am happy you are looking at caregivers, whether they are called that or not, since it is part of so many people’s lives. I met Suzanne Mintz once, who told me about being a caregiver for her husband and how it led to her subsequent inspirational and influential work.
You note that many people don’t self-identify as caregivers. I think there are three additional difficulties in learning more about what people do in this role. One is that telling a story about caregiving requires context that people often do not want to provide, especially when it involves their families. Another is that many caregivers maintain a façade or compartmentalize to be able to accomplish all that is necessary in the other facets of their lives. Finally, caregiving is about others and it can be hard to reflect on what was learned in that role or to be perceived differently because of being a caregiver.
I was recently interviewed about health literacy and said how, even though I was aware of some of the research on it, I didn’t deeply understand the impact of health literacy until I was a patient advocate. The article drove home the importance of knowing who is accessing health content and their needs and skills. But I felt a little embarrassed to have my patient advocacy called out like that because it truly was an honor and a serious responsibility to be able to help someone in that role.
Lisa, as always, your wisdom and experience are deeply appreciated. I hope our research can shine a light on this group and encourage more people to recognize the role of caregivers. Thank you.
In an effort to cast a wide net, I cross-posted on e-patients.net – be sure to read the comments being shared there, too:
http://e-patients.net/archives/2013/05/caregivers-please-share-your-stories.html
I’m a caregiver for my husband for the last 13 years. He’s paralyzed from his neck down after a spinal cord injury he sustained in a roll over car accident. The transition from wife and mother to caregiver and mother hasn’t been easy, but we’ve made things work. We still had our 5 children at home when he had his accident. They’re all grown now and married and we are now grandparents.
What help us was the rehab process at Craig Hospital in Englewood Colorado. They only to TBI and SCI care. They worked with me to help me feel confident in my skills to take care of my husband when he came home. Recently, I’ve made some connections with other caregivers on facebook and that has really helped me to not feel so isolated.
Ann, thank you so much for sharing your story (and apologies for the delay in approving it — busy day 🙂
I’m curious — how did you find the other caregivers on Facebook? Through an organization of some kind or were they friend of yours who recently became caregivers?
Again, thanks. I really appreciate your taking the time to comment.
Hi! I am 52 years old and I am my husband’s caregiver. My husband is now 58. In December 2009, he was diagnosed with Mild Cognitive Impairment (MCI), was put on disability by his employer, and a year later had to retire. We have a son who is just finishing his junior year in high school.
I LOVE http://www.caregiving.com where I blog and read and reply to other people’s blogs. Although my husband and I do attend a support group twice a month (most months anyway) the support I receive at caregiving.com far surpasses anything I have found in an in-person support group. We are in our third support group. I don’t love the in person group, primarily because I do not find it as supportive as I do caregiving.com.
Since the beginning, I have been told I am in a “unique situation”. I KNOW I am not the only woman out there, caring for her husband who has some type of dementia, and raising a child. Through caregiving.com, I have found others like me! YEAH! I have established friendships with other mom/women/caregivers who understand my “unique situation”, unfortunately.
Over the last few years, my husband and I have been advocating for Alzheimer’s and in my case, also for caregivers. Together we have spoken on two panel discussions at regional Alzheimer’s conferences and we have spoken several times at a class given by the Alzheimer’s Association. My husband is part of their advocacy committee and has twice traveled with the committee to our state capital. He has also been interviewed on TV about his illness. (My role was to sit there and look pretty!) I have spoken at a Walk to End Alzheimer’s, been nominated twice for a caregiving award, have created a class that I’ve been teaching at my city’s senior center for 2 1/2 years, and am now teaching a monthly class at the Alzheimer’s Association office. Both classes I teach as a volunteer. On caregiving.com, I co-host the Sandwich Shop blogtalk radio show once a month and help moderate the monthly chat on the same subject. I have contributed to two CareGifters books and co-authored, “After the Diagnosis”, a free e-book on caregiving.com. My husband and I have worked hard to make the best of a difficult situation.
Frankly, I don’t want to imagine where I’d be on this journey without the internet.
I am mom and caregiver to my 29-year old daughter Amanda, who was born with spina bifida. It’s been a journey of cheers and tears, challenges and triumphs. There were no instruction books when she was born! So – I wrote my own. If you want the whole story – please consider taking a look at my recently published book that I had to write – I needed other people to know my story and for other caregivers to know they are not alone. (“Amanda, Perfectly Made” by Laurel Rausch Greshel – on amazon.com and barnesandnoble.com) So many times, I felt alone in my journey. My book tells of the experiences we had through the years with teachers, friends, and professionals. It tells of the times we almost lost Amanda and death knocked at the door. It tells of my tears and the not so pretty thoughts of caregiving. I would love to tell you all that you want to know! And the story continues … we finally got Amanda moved out from our home to her own place. We searched for two years for the right place for her to live. And even though she does not live in my house, I am still involved as caregiver with those midnight phone calls and almost daily trips to check on her. Take a look:
http://www.amazon.com/Amanda-Perfectly-Made-Caregivers-Journey/dp/1475949219
I started caring for my grandmother at 28 and helped with her for almost ten years. During that time other family members starting getting health problems- my grandfather, parents, and husband. My husband has a condition similar to Parkinson’s Disease and he is now on disability and can’t do a lot of the things he used to be able to do. But he’s adjusted well and we try to approach life with a sense of humor.
Hi, for the past four years I have assisted in the caregiving of my granddaughter. She has Emanuel Syndrome and my daughter started looking for other families on the Internet back in 1996, featured on “Life On The Internet” on the Discovery Channel.
From that early stab into the World Wide Web, our family was connected with a first family with this rare disorder in England. Many families are now connected via real life, Facebook, email groups, and find much support and comfort sharing stories and asking for help from other families when facing surgeries or other serious health issues.
I left my caregiving job in 2009 working in long term care to come and help care for my grandchild who is now 18 yrs old. She is total care 24 hrs a day which is draining. The wait for a long term placement is unknown. There are waiting lists for many families in similar situations.
I am grateful to have been part of the support system and have made many good friends along the way – from other countries like Chile, England, USA, Canada and others
Being able to share concerns, get input from other parents, grandparents on feeding, behaviours, medications that work for pain, seizures, so many other reasons – has given us all a circle of support and a wealth of knowledge.
Parents of special needs children become trained caregivers instantly as they learn how to support their baby, their child.
Whether they like it or not they learn about seizures, medications, feeding tubes, dealing with various types of crises that many others would call 911 for.
parents become round the clock nurses who find their situation easier by sharing online in private forums or open groups.n without the wealth of information on the Internet, many would be isolated, more stressed and without the tools and support they now can find via social media, email, access to medical and health information.
Although my family member is in a respite situation part of the week, it is still a tenuous situation – and can change at a moments notice – so having a circle of support online is so amazing. The bond created among the families is magical. First time real life meetings solidify online friendships.
I appreciate personally having access to chat rooms, friends who will answer emails within minutes or hours, and knowing we are not alone and isolated
Thanks for the opportunity to share
Hi Susannah,
We hear from caregivers across the nation every day at AgingCare.com
The AgingCare.com online caregiver support group is a place where you can ask questions, give answers, exchange messages and get support from other family caregivers who understand exactly what you’re going through.
Take a look here:
http://www.agingcare.com/Caregiver-Forum
Wishing you much success on your project.
Richard
Thank you for these amazing comments — each one tells a story that must be heard about family, love, and health.
We are putting the finishing touches on the upcoming report, set to be released on pewinternet.org the week of June 17. I can’t wait to shine a spotlight on caregivers!