Recognizing Family Caregivers: Handling Stress and Finding Resources

November is National Family Caregivers Month and we wanted to take time to recognize all family caregivers. Last year, we were celebrating them, too. 

Caregiver Action Network announced the theme “Caregiving around the clock” and has some good tips and resources. While the stress of caregiving can often be overwhelming, we wanted to learn about how other caregivers ask for more help or delegate.

We asked former and current caregivers if they asked for help and how they looked for resources. Of those that we asked, most reported that they asked for some kind of help or searched for resources online to mixed success. As Working Daughter discussed, not all of us are good at asking for help. 

The most common obstacles to asking for what we need are thinking:
I don’t need help.
I should do this.
I don’t want to bother anyone.
Asking for help makes me look weak/lazy/incapable/selfish….
It won’t be done right.
— Working Daughter

Looking back on our personal experience, it was an acute and rapidly changing process in caring for our sister. Her symptoms changed and increased dramatically and our stress levels were extremely high. It was physically and emotionally taxing and we often felt to be in a fog and we weren’t sure how to ask for help. It sometimes felt like another thing “To do”- reach out to others for assistance with meals, the children, coordinating rides while we were traveling to help our sister. We wanted people to read our mind but we know now that is not possible!

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Our younger sister, Caitlin (#4 in the birth order) helped care for our sister with end stage cancer. She was 27 when our sister died. She stated, “ I tended to look for resources myself rather than asking for help, partly because as a young caregiver for a young person, not many people I knew had been in a similar situation.” Caitlin was among the estimated 19 million young adult caregivers as of 2015, an under-served population.  But if no one can relate to your experience, Caitlin has some great ideas about where to find resources, advice, and tips. “ I researched online, both through sources like the NIH for mainstream questions on how to manage a certain symptom, and through articles and blogs for things like easy, healthy, make-ahead recipes. One advantage to reading message boards and blog comments is finding tips from someone dealing with a similar illness that apply more specifically to your caregiving issue than a general article would. Also, YouTube videos were perfect for learning exercises, stretches, and massages to deal with aches and pains. Yelp and other review sites were essential for crowdsourcing local resources--massage therapist recommendations, or take-out dinner ideas when we were too overwhelmed to cook.”

Similarly, Feylyn Lewis, a doctoral researcher focusing on young caregivers, responded: “As a youth caregiver, I did ask and search for resources on young caregiving, hoping to find stories of young people who cared for their parents like me. To my dismay, I didn't find anything, nor were health professionals aware of resources either.” So, Feylyn took it upon herself to do searches online and ask her therapist at the time. She notes that there is an increasing presence of online support groups on social media for young caregivers and the isolation she felt has inspired her to help change this for young caregivers today.

Kristen Farrar is a caregiver for her child with Type One Diabetes. She said, “Having a child diagnosed with Type One Diabetes is similar to having your first child. You don't really know what you're doing at first and there is a lot of learning as you go.” She also explained that while the most overwhelming part was right after diagnosis, there are frequent times when she still feels overwhelmed. Kristen immediately reached out to a co-worker who also had a child with Type One Diabetes and became involved with the non-profit JDRF (Juvenile Diabetes Research Foundation).

Mary Lou who cares for her husband said that she tried searching online for meal ideas when she felt truly overwhelmed trying to figure out what to feed her husband between conflicting medical diets, little appetite, and doctor’s orders to use low sodium. She also asked the doctor for a referral to a nutritionist and is waiting to hear back. We can personally relate to the challenges of dietary restrictions and good nutrition while caregiving!

The Family Caregiver Alliance reminded us that there are many resources listed here on their website with statistics, reports, and tips about caregiving. They also have stories from caregivers about their personal experiences here.

A common theme that we heard in talking with other caregivers is to find others to commiserate with, to decompress, to confide in. Kristen said, “When I do, I vent to my husband or reach out to an amazing group of local women who have Type One children. We have a group text where we vent to each other. Each fall we do a charity walk for JDRF. We also try and get together for breakfast or dinner once a month. I'm on some Facebook pages that I read sometimes. It helps to read about others who are going through similar things as my family.” Caitlin said “I learned that it really helps to have others to rely on, and I was lucky to have our whole family involved in caregiving. For any caregivers working on their own, I think finding friends or community members to vent to and bounce questions/ideas off of is essential to staying sane and energized.”

Speaking of relating to others going through something similar….we just discovered this Podcast which features stories by family caregivers, The Happy Healthy Caregiver.  We also recently learned about a program through the University of Denver,  Center for Oncology Psychology Excellence (COPE), offering psychological and emotional support to cancer patients and their families.  COPE is the first psychology program of its kind in the nation to provide comprehensive training and partnership with cancer center. They stated, “Caregiving takes an emotional and physical toll on the body. It is a lot of work! Everyone is always saying you need to talk care of yourself before you take care of the person you are caring for, and that is really hard to hear, but it is so true! Taking self-care time to go for a walk, or do something focused on the caregiver is important to stay healthy.” They offer several great resources in the Denver area and online, many of which can be found on their website here.

Caregiving is hard. It is also very rewarding. As Caitlin said: 

I was also surprised to learn how difficult but still rewarding the experience can be. It was extremely hard for our sister to need us to take care of her, and it was exhausting for everyone, but I am so glad we we could be there for her.
— Caitlin

There are many ways to learn and grow from caregiving experiences. Kristen says she would be more honest in order to decrease her stress, saying “I try to minimize or downplay with family and friends how hard it really can be to manage Type One. So if there is one thing I'd do differently it would be to be more open and honest about how stressed or frustrated I can feel at times.” Caitlin says “I would have taken more time off work--which is a luxurious choice most people don't have. It was hard to predict how our sister would do week to week, and while I missed the familiarity of my routine, I wish I hadn't put pressure on myself to keep up with work and  take on added stress.” Mary Lou says “Patience!  Slow down and do one thing at a time.  Lower my standards and don't worry about it. More Patience!” She adds: “Sometimes the most important thing I could do for Jim or my Mom, was to just hold them, and love them.” Feylyn says, “I try to stay mindful in the moment and not live so ‘future-focused’! This helps my worry immensely.” Looking back, we agree that we would be more honest about our overwhelming feelings, worry less about the insignificant things, and do our best to stay present.

We enjoyed gathering all of the insight that these caregivers, professionals, and experts have shared and hope it helps you too.

 

Statistics and the Harsh Realities of Caregiving

We recently read several interesting articles and research about caregiving. For any of our young adult readers who are actively involved in a caregiving role right now, we are cheering you on and personally understand how tough of a job you have. You are among an estimated 19 million young adult caregivers as of 2015 and have been identified as an under-served population, as we’ve reported before. Sometimes our stressful period of caregiving seems long ago, but we can be taken right back to that moment by reading about others’ experiences. And we are fortunate to even have the chance now to read and reflect, considering all of the young adults out there who are caring every day for a loved one - no time for reading, at least not anything longer than a pamphlet, no breaks, lots of To Do lists, sleepless nights. Hopefully with good friends, great snacks, plenty of cheese, and funny entertainment to accompany you. Click here if you need ideas for a good laugh. 

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When reading this article, we almost didn't even flinch: “New research from Transamerica Institute finds caregivers risking their health and finances to care for loved ones” was the tag line. We've heard that before and we know it is true. But wait, this should be shocking, right? Why isn’t this in the headline news?

Perhaps our experience has made us numb to these reports or immune to shock from these statistics, because we have experienced many of the negative effects that are discussed - not being fully prepared for our duties, taking time away from work, putting our own health aside. We’ve read about similar numbers and problems before. But when we put real faces to these issues, and think of young adult siblings, in particular, going through these struggles, we want more solutions. At the very least we want to send them a care package with triple creme cheese or our favorite humidifiers via Amazon Prime, and stealthily drop a basket of beer and brownies on their door step.

Are we becoming blase to this problem? If we just keep talking about the issues, it will become better, right? Facts like only half of caregivers felt properly trained to administer certain medications or perform nursing duties keep happening. We must do this better.

The amazing Feylyn Lewis, PhD researcher on young adult caregivers and guest blogger,  shared this research with us several months ago and it spoke to us. It makes the point that research doesn’t usually share or seek out the negative consequences. Yes, so true! We can’t always paint a rosy picture of caregiving. There are harsh realities, stress, and much hardship involved. This research reports the perceptions of children and young adults on their experiences of having a parent with dementia. The truth came out, in sometimes surprising and sad ways, but we give them tremendous credit for sharing their reality. Only through honesty can we understand better what it is like to be a caregiver, and it may be therapeutic for others if they share feelings in common with the research subjects. They discuss “taboo subjects” or those that aren’t considered socially acceptable, such as “I don’t like my ill parent”, the sense of “waiting for death” over an unknown amount of time, and the distressing behaviors of dementia. The researchers were criticized for their focus on the negative but, unfortunately, the experiences of the subjects were not positive. The researchers explained: “their stories of the impact of dementia on their lives have been negative. We consider not acknowledging these experiences would be unethical.”

We are very curious to hear about your experiences. What is the hardest toll for you, your family, or your career that caregiving has caused you to pay? Do the reports and statistics paint an accurate picture - too optimistic? Too bleak?

March 30, 2017 Caregiving and Grief News Roundup

In this Caregiving and Grief News Roundup, we share several touching personal stories we came across in the news recently that resonated with us, as well as a few positive stories from around the country.

First, this beautiful story in the Washington Post emphasizes the importance of simply being there with a loved one at the end of their life. We found ourselves nodding and tearing up reading, as Jennifer Palmieri writes: “Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters.”

This real and emotional story describes a cancer patient being disappointed in how she was treated as a person in the hospital. Sue Robbins makes what seems like a reasonable request: “Please treat me as well as you are treating my tumour."

Check out this short video from PBS News Hour's "Brief But Spectacular" series with one our favorites, Kelly Corrigan, best selling author and podcast host. She briefly talks of her own experience with breast cancer and learning that her dad was diagnosed with terminal cancer. We relate to her stating that she put her energy into writing.

Of course, one may expect to become a caregiver later in life, perhaps for elderly parents, but when caregiving comes in your 30s and 40s, it is unexpected and stressful. This NY Times article describes experiences from different “off time” caregivers who face the difficulties of juggling careers, child-rearing, and missing out on fun activities.

Daughters Unite shares the story of a “Millennial Caregiver”, Feylyn Lewis. They are a unique population in need of more awareness and support as their caregiving responsibilities affect their ability to attend college, become employed, and engage in peer relationships.

In a few other uplifting news stories from around the country:

  • In Ohio last week, the state legislature passed the Ohio Caregiving Act, which ensures hospital patients' designated family caregivers are offered instruction in providing needed care at home.
  • From Indianapolis comes a new app, Patch Health, designed to help multiple caregivers for a loved one coordinate care. Brilliant!
  • Earlier this month in Seattle, radio station KEXP teamed up with the Seattle Cancer Care Alliance Proton Therapy Center to present “Music Heals,” a day long program of stories and music with the power to lift our spirits and heal our souls in the face of cancer. We love this concept! We've featured music on our Resources page and stories from guests about the power of music to heal and a survivor’s playlist.