Caregivers, please share your stories

Caregivers, please share your stories

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.

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Comments

34 Responses to “Caregivers, please share your stories”

  1. Steve Collins says:

    I am a father of a child with M-CM, a rare genetic syndrome.

    As far as caregiving goes, I am confused when people tell me how heroic I am. I see it as something that every parent would do. I feel fortunate that I have the opportunity to take care of my daughter, Signe, and am regretting the day when I won’t be able to, or when it wouldn’t be in her best interests if I was to continue to be the only caregiver. I also, see this as a unique time in history where I can contribute what I know to a larger audience via being ‘wired in’. And what I, and other caregivers have to say , contributes to the solution of how we’ll handle this larger problem looming on the horizon.

    • Susannah Fox says:

      Thanks, Steve. What you wrote about not feeling like a hero resonates with what other parent-caregivers have shared — they reject the notion of being a “superhero” and insist that any mom or dad would do the same thing. But then again, I still think the internet is a secret weapon for people who are called to serve their loved ones — as you say, the ability to connect and share with other people is incredibly valuable.

      I wonder if the experience is different when someone is a caregiver for less mysterious reasons, like the frailty that comes with old age. No medical puzzles to unravel. Does the internet still serve an important purpose?

      • Steve Collins says:

        Yes Susannah, the internet serves, and will continue to serve, as an important purpose by helping people connect, and share their experiences. I believe, both patients, and caregivers, gain a sense of well being and positive mental health attitudes simply by connecting with other like minded individuals online. And with positive attitudes comes better health. We’re humans and I believe our need to connect with others won’t diminish with age and the internet will certainly help us all stay connected.

  2. Ann says:

    I am caring for my husband who has MND (ALS). I am connected to other women across Australia and even one in Seattle who are in the same situation. I cannot imagine I could make it though the day without the support I get from chatting , asking questions and even moaning to these other women on Facebook and Twitter; it is invaluable to my sanity!

    • Susannah Fox says:

      Thank you, Ann! I can only imagine the connections you have been able to make. Maybe our report will get covered in the Australian press — this demographic shift is happening worldwide and (I think) deserves attention in every country.

  3. In addition to having the experience of providing care to a number of friends over the years, I also worked as a personal aide. My story about this was commissioned by our friend, Christine Kraft. Link: http://bit.ly/ydBXeU

    As you might easily imagine, I have lots to say on the topic of caregiving and caregivers. Much of the little (and redundant) information out there focuses on “sandwich generation” issues and spouses/parents thrust into caregiving because of the disease/condition of loved ones.

    I’ve long believed (grounded in personal experience mixed w/sociological blah blah)that we need to look more closely at people who are single by choice/circumstance, as well as those who have no useful/generous/willing family members to provide care.

    What emerges are networks of care and caregiving. You can see this in action by studying how people in Twelve Step fellowships provide care when health issues emerge. Faith-based communities also fulfill this role when families are absent.

    Where does the Internet fit into all this? Finding resources, receiving support via social media platforms. No news there. What’s news to me is how difficult it has been to get a *public* conversation going about the health-faith connection, especially i/c/w caregiving. Lots of chat via the back channels.

    There’s more, of course! When is there not from me?

  4. JOY says:

    My name is Joy. I am a Chinese woman living in Shanghai zone.

    I had difficult forceps delivery in mid-2011, unfortunately I was left with a cystocele and rectocele. it is not life threating disease, but the impact of pelvic organ prolapse is so big on life quality and psychology. I gone through very tough year in 2011 and early 2012.Because before childbirth I never heard of this epidemic and neve knew the importance of pelvic floor muscles, I was really scared like those millions of US women.

    I crazily worked online and searched every information I can learn about this issue. Luckily I learned a lot from those many patients support groups and build confidence that I can cope with this for many many years. I am not worry about it now.

    After reading many many reserach papers and blog posts of pysicians&PT, reading tons of conversions in forums and facebook groups, I want to share my learning to those women like me.

    I created website with ‘POP’ 101 and medical update to let people know better about Pelvic Organ Prolapse. I established online chatting group, forum, and blog to guide those new moms build confidence and look for the right treatment solutions. I spent a lot of time talking with those women. I don’t want those woman repeat my experience (scared, depression, severe insomnia, got worse without correct guidance). And I am doing something to broadcaste relevant information to young ladies, hope they could avoid tis when give birth. I think I am a caregiver. I love to be a caregiver.

    I have advantage to do this since I can well read English, I am internet savvy and I like eidting articles. Why not to do something benefits myself and also others?

    By the way, I am really thankful to some women in the U.S. It is because them that I can learn the right ting and in the right way. Internet is the greatest tool to connect poeple in different worlds. And sometimes we are even more true when on the line.

    Happendly, I found the e-patients blog from a slideshare presentation. I am happy to know e-patient, it enables me to be a smarter ‘patient’.

    Thanks

    JOY

  5. Randi Oster says:

    I am a sandwiched boomer who’s rearranged my life so I can be there for my 84 year old mother (who lives with us) and my son with Crohn’s disease and still work.

    I chose to leave an executive position after 18 years when my father died. After our experience learning about what Medicare covers for chronic illnesses, I decided to devote my life to educating others. In the last decade, I’ve sat at client’s kitchen tables as they cry and repeat the refrain, “it is a nightmare.”
    I help people proactive prepare by understanding the health care system and how to empower themselves.

    I am blessed because I was able to be there for my dad and now am here for my mom. I am finding as my parents age, they need emotional support as well as help coping with the activities of daily living.

    It is my mission to help others cope with caring for others. I have tips, tools and tricks I use for both my mom and son. These skills are transferable to others and are based on my years of corporate leadership positions, quality training and well as compassion as a woman.

    Let me know how I can help.

    • Susannah Fox says:

      Thank you!

      Sometimes when I describe my work I can tell right away if the person I’m talking with has had a personal experience with caregiving. They either “get it” or they don’t. I try not to mind. How nice for them, I try to think. But they’ll be with the rest of us some day, having the experiences like you describe, both sad and beautiful.

      What I hope to do is shed light on these “hidden” aspects of health, so that people who may not yet understand it are better prepared and so policymakers, entrepreneurs, and community leaders can make better decisions based on data.

      Again, thank you for helping me to do this by sharing your story!

  6. Christy Collins says:

    I suggest Elizabeth Aquino’s “How We Do It” posts http://elizabethaquino.blogspot.com/search/label/How%20We%20Do%20It I’m not sure what the ‘wired’ angle on Elizabeth’s storytelling might be– perhaps the community of blogging caregivers that she is a part of.

    • Susannah Fox says:

      This is the primary danger of this work: the feeling of falling backward and sinking down into someone else’s life for a while, as I did when reading her blog. Thank you for sharing it.

      • Christy Collins says:

        Well you might be onto something there. What friend or family member who can’t directly relate could absorb all of that on an ongoing basis? So being a caregiver for such intense needs is terribly lonely.

        • Ann says:

          Christy you sum up my feelings with the word ‘lonely’. You care so intensely for another person but it takes up all of your time and others are often uncomfortable with the illness and your world shrinks and shrinks.

  7. Lisa Conn says:

    When my 17 year old daughter was diagnosed with Anorexia Nervosa our adolescent pediatrician who is a specialist in eating disorders told me to go on the web and join FEAST (Families Empowered and Supporting Treatment of Eating Disorders) and also to join FEAST’s online forum called Around the Dinner Table (ATDT). There, other parents who were feeding their children to health coached me in how to do it. My daughter stopped going to school and she and I ate every meal together for many months. I chose the food, cooked it and plated it. Her job was to eat it. My daughter seemed possessed, but as she raged, cursed, sobbed and contemplated killing herself or killing me I remained calm because my on-line friends were there to support me 24/7. We had wonderful medical and therapeutic support also, but without my online community my daughter would not be weight restored, independent and healthy 2 years later as she is today. Scientific evidence shows that this type of family-based treatment has a great chance of success. I was my daughter’s caregiver and primary treatment provider, but it was the hardest thing I have ever done and I needed lots of support. ATDT, my online forum provided that.

    • Susannah Fox says:

      Amazing – thank you for sharing that story!

      I am so deeply grateful to everyone on this comment thread. I had hoped for a conversation like this, but it is exceeding my expectations!

  8. Lisa Conn says:

    I also want to say that I am grateful that I am a stay-at-home parent so that I could devote myself full time to caring for my daughter. I can’t imagine how difficult it would have been to manage her illness at the same time that I was working, or conversely to give up needed income in order to stay home. Additionally, I am also fortunate to have insurance that paid for basically all psychiatric and medical care that she needed. This relieved our burden tremendously.

  9. Steve Collins says:

    Ann, I agree with you when you say summed up with the word ‘lonely.’ When others are uncomfortable with the illness it certainly is not easy. Staying open and not shutting people who don’t ‘get it’ out all the time is tough to maintain. Staying open and positive, focused, and flexible is a tall order. especially when routines become rigid.

  10. to me, caregiving is lonely but it’s also about dealing with a changed identity / changed dreams. It’s about immediate re-prioritizing of everything in your life. And while others may go through something different, for me it was the instant my pregnancy went poorly and then Alexis spent 2.5months in NICU. Decisions are made for you, doctors visits take precedence over other commitments – you can feel intensely powerless.

    Thankfully online communities can offer support – a reassuring voice, a ‘hurray’ for little successes, ‘yippees’ for healthy days – but in general, it’s about forced introspection about whether you have the grit to carry-on each day. Are we resilient? We have made ourselves so. Do we have moments when we want to scream at the world, oh definitely? Do we sometimes imagine a different life? Do we get upset when we want to say ‘yes, I can do that’ but we really know we can’t commit ourselves for it.

    We are on a journey, a different one than we expected but for me – one full of hope and giggles.

  11. Gilles Frydman says:

    First, a huge Hooray for all caregivers! Caregiving is HARD!

    When it comes to discussions about caregivers I always wait for the conversation to have build up. And then I search for the word “guilt”. Which I just did. Since it is absent from the conversation, I’ll add my comment: for many caregivers, there is a tremendous hidden cost.

    At least for cancer caregivers (and I suppose it is true far beyond cancer) many have a profound feeling of guilt, because caregiving is hard, because they are not the sick ones, and many more deeply entrenched reasons that are another much less side, less sexy, of the unmentionables.
    Unfortunately, the impact on caregivers is almost never mentioned, which deepens the psychological impact on the caregivers. I think this is a specific form of PTSD.

    On ACOR and now at Smart Patients we strongly encourage open discussions on the burden of caregiving. It’s an important conversation, that must happen in the open, so that all understand its reality. Of course, when asked, cancer patients are the first to say that caregiving is much harder than being a patient.

    • Alexandra Drane of Eliza Corp asserts that being a caregiver should have a diagnosis code, because it affects outcomes as much has having a chronic medical condition. That’s sure something to think about, because it implies that perhaps it should be given the same accommodations as having a chronic medical condition.

      Including therapy, I imagine, though I don’t know what form it would take.

      (For those who don’t know, Eliza has a ton of data on conditions and outcomes among their patient/client population.)

  12. Birgit Hartoft says:

    I live in Denmark.

    In 2006 my husband died from kidney cancer (and a severe medication error brought his death forward). He was ill for three years.

    He managed much of his own care himself, and we had a friend who was a nurse who came to sit with him once a week. He was very outgoing and open about his disease and the issues it brought but still very smiling and cracking jokes so we had lots of visits from friends, which was very good for him and me. Isolation is the worst consequence of severe illness.
    Obviously he was not that happy and funny when we were alone. And some of the worst problems stayed between him and me (and our nursing friend).

    Our friends kept commenting on how strong I was, wondering that I didn’t crack, which at the time I found irritating and a bit funny too. For me the important thing was that he was still with me – everything else was secondary.

    But after his death the reaction set in, and it was several years before I felt remotely myself again, partly because of the loss of my life partner and best friend, partly because of the toll it takes caring for someone else day in and day out – even if it’s not heavy lifting or managing medication etc. The mental strain can be very severe and I found that people were happily unaware and did not understand that you couldn’t just go back to “the way you were before” when the person you’ve cared for is gone. Personally I ended up with an informal diagnosis of PTSD four years after my husband died.

    I had a full time job but worked for an understanding employer who gave me a lot of leeway both before and after my husband died, which was a great help. My husband wasn’t interested in networking with other patients, and for some reason I never thought of it as relevant for me – after all I wasn’t ill and I coped without feeling it a great strain (until afterwards).

    An issue for me was that generally speaking I (the caregiver) was more or less “invisible” to doctors and nursing staff, sometimes I even felt in the way. I still see that happening, and that is frustrating and counterproductive. Often the caregiver has a lot of really important knowledge about the patient and how he reacts to illness and treatment. It’s a waste not to use it.

    Looking back, there was much I could have done different or better, being a caregiver doesn’t come easy to me, I’m not a very ‘caring’ person in general (someone mentioned guilt :-)), and it WAS hard, also for a long time afterwards.

    But I’d do it again for someone I love without a second thought.

  13. D'Anna Holmes says:

    Like Lisa, Steve, and Catherine I too am the parent of a child that has special needs. My son was born at 3months premature and was eventually trached in order to come home for the NICU. By the time he was 13 months old, he was diagnosed with stage III liver cancer which coincidently was the day before Hurricane Katrina hit New Orleans, LA. We were evacuated from the children’s hospital about three days later. Between the long-term effects of prematurity and chemotherapy, my son has a long list of physical and developmental challenges.

    I probably have enough opinions about caregiving to fill up three books by now, but I won’t repeat some of the other things already discussed in these comments. I’ll also try not to make this too long.

    I of course struggle with the loneliness and I’ve had to struggle with adapting my ideas of what I thought my son would/will be. I’m a single parent, so it’s a daily struggle to work and be at every appointment and every surgery and every evaluation and every etc. For me personally, one of the things I struggle with the most is finding the time to get connected and staying connected with support groups. I’d love to say that after working 40+ hours a week and getting Mason to his 5 weekly therapy appointments and school and doc appointments and daily medical care and everything else a kid has to do that I have time for message boards and blogging. I don’t! People will often refer me to a support groups that meet in the afternoon, before I get of from work or early on Saturday mornings when all I really want to do is sleep.

    If I’m being completely honest with this group, the impact of not regularly connecting with a support group is more than I can put into words. I’m working on doing better and connecting more regularly but most times it feels more like a chore than anything else.

    • Susannah Fox says:

      Thank you, D’Anna.

      In reading your comment I was reminded of one of the first interviews we recorded, the morning after the first night our survey was in the field. We often listen to recordings of those early interviews so we can be sure the questions make sense to people. We adjust them if need be, such as adding “medical device” to our series about how people track their health symptoms and indicators, thanks to feedback from a respondent living with diabetes.

      The interview I’m thinking of was of a man who frankly was very skeptical and resistant to even beginning to answer the survey questions. We were in the field in August 2012, when the presidential campaigns were heating up and there were a lot of political polls in the field. Maybe he’d had to answer too many political surveys and he didn’t want to do another one. Maybe he is sick of polls altogether (as many people are). Once he found out that it was sponsored by the Pew Research Center and was about the internet and health, he agreed to continue, but I could still hear an edge in his voice.

      However, that edge softened when the interviewer began asking about whether he helps a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Yes, he said quietly. It turns out that he is the primary caregiver for both of his parents. I was touched as he stayed on the phone, considering the questions we had crafted and answering them, one after the other.

      A full-length survey can take 20-25 minutes — a pretty big commitment of time for anyone but especially for a caregiver. This man stayed with it, registering his opinion and experience, allowing us to take his likeness in outline form and add it to the thousand or so other caregiver voices we would eventually collect in this survey.

      Participating in a survey is a form of voting, I think. Voting for yourself in a way, saying that your opinion is worth counting. Voting for y/our country or cohort in another way, saying that this experiment we’re all participating in is worth measuring.

      Surveys are storytelling in aggregate. The comments being shared here are storytelling in particular. Both are powerful. Both can be painful. I’m beyond grateful to those who share their stories, like that man on the phone and you, D’Anna, because of that last line. It can be a chore to connect. I know it was a chore for every respondent to spend that 20+ minutes with us on the phone. I’m humbled by what we ask of people and what they ask of themselves. Thank you, thank you, thank you.

      • D'Anna Holmes says:

        Susannaah,

        Thanks for taking the time to respond to my comment. I agree that caregivers can sometimes come across as very guarded because we are asked to participate in so many things, and don’t always feel our voice is heard anyway. LIke the gentleman you interviewed over the phone, I’m always a little more inclined to do a survey or share my stories with organizations like the The Pew Research Center.

        As much time and effort as it takes for caregivers like myself to share, it takes a love and dedication for answers and research from people like you to do what you do everyday. So thank you, for asking for the stories and doing the surveys and sharing the research.

  14. yuonne says:

    Howdy just wanted to give you a quick heads up. The words in your post seem to be running off the screen in Ie. I’m not sure if this is a format issue or something to do with web browser compatibility but I figured I’d post to let you know. The layout look great though! Hope you get the issue fixed soon. Thanks

  15. Richard Nix says:

    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

  16. Elissa Adair says:

    Hi Susannah,

    My family and I were the primary caregiver for my Aunt Lucretia during the final years of her battle with lung cancer (for the record, she was not a smoker and fortunately the cancer grew slowly up until her final months). She lived with us and was until the end independent, really concerned about being a burden, resistant to being seen as “sick,” and a brave and accepting soul when it came to facing her own demise. We all miss her so much! The lessons she taught us all, especially our daughters (15 and 12) about family, faith and how to die are ones we will hold dear for our entire lives.

    One thought I’d contribute: my self-identifying as a caregiver also requires the person being cared for to see themselves as dependent and in need of assistance — which to the end, many just don’t want! Thinking of it as just what family do for each other normalizes the caregiving process — but then how to get caregivers the support they need? Catch-22 here.

    Thank you for all you do to raise awareness on this issue.

    Elissa

  17. Autismgramps says:

    We fought so hard for in home care so our autistic son wouldn’t end up in a state institution, only to discover on video surveillance, the unthinkable happening. Caregivers secretly abusing our defenseless, non verbal autistic son. This should be a wake up call to anyone who has caregivers in their home. You never know what they are really doing, unless you have video surveillance. To our faces, these caregivers you see on tape (both were recently convicted) were as nice as can be, but when we were out of the room or out of the home doing errands, well, take a look at what they were really doing to our autistic son…it’s every families’ worst nightmare. Don’t let it happen to you. Get video surveillance. http://www.youtube.com/watch?v=IK1YqZ8ioaY Michael Garritson RN caught on tape eye gouging patient.

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