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!

ToDo.jpeg

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.

 

Presidential Candidates on Caregiving

Obviously, there are a lot of serious issues facing our nation this election season. As we head into the heat of the Presidential race, we thought it would interesting to look at what the candidates are saying about one issue that is important to us - family caregiving. Turns out, it’s a not a hot topic for them.

You may be thinking- there are more pressing issues such as national security at the forefront of the discussions, so why do we care about this issue? As we’ve stated before, family caregiving may affect all of us at some point, making it a topic of importance for employers and politicians. According to the AARP Executive Summary of Caregiving, there are about 43.5 million unpaid caregivers in America and the majority (85%) provide care to a family member. They report emotional and financial strain. Among the employed caregivers (not self-employed), only about half report flexible work hours or paid sick days to help with their caregiving responsibilities. Many caregivers are overwhelmed and some have to leave work in order to care for a family member. The burden of caregiving can be tremendous to the person involved, but can eventually affect the workforce. Politicians can help by adding more resources and tax breaks to help them in their time of crisis. We wanted to learn more about where the candidates stand, so we did some digging and found a few articles to help us.

Although there is a growing need, with an increasing gap in the ratio of potential family caregivers for our aging population, this Washington Post article from a year ago found that most presidential candidates in the primary season were silent on the topic, with the exception of Hillary Clinton who has called for more support for family caregivers.

More recently, in the first few minutes of the debate between Hillary Clinton and Donald Trump on September 26, as the debate transcript shows, Clinton stated: "I want us to do more to support people who are struggling to balance family and work. I’ve heard from so many of you about the difficult choices you face and the stresses that you’re under. So let’s have paid family leave, earned sick days. Let’s be sure we have affordable child care and debt-free college.” While not exactly focused on family caregivers, at least she recognizes the struggle. Trump mentioned child care once but did not address the topic.

On September 13, the National Academies of Sciences, Engineering and Medicine released a report, Families Caring for an Aging America, that outlines challenges family caregivers currently face and makes recommendations for is needed in the future. As summarized by Next Avenue in this Forbes article, the report calls on the next president’s administration to “take steps to address the health, economic and social issues facing family caregivers of older Americans.” It also urges the federal government to create a National Family Caregiver Strategy recognizing the vital role family caregivers play in the health of older Americans.

As another Forbes article explains, Hillary Clinton has more detailed plans that would affect family caregivers: “Clinton said she would work to increase Social Security benefits for people who take time off from paying jobs for family caregiving duties. She also advocates a new tax break for individuals caring for aging parents or grandparents (though not spouses). In addition, Clinton favors greatly increasing the amount the federal government spends on its Lifespan Respite Care program, which provides money to states to give family caregivers a temporary break.” These plans are indeed listed at the bottom of this page from her campaign website. 

There has been recent focus and discussion of paid family leave policies by both candidates, which is related but not quite the same as addressing the needs of family caregivers. Clinton’s plan is to provide up to 12 weeks of paid family and medical leave to care for a new child or a seriously ill family member, with at least two-thirds of current wages funded by tax reforms. The definition of “family member” is not clear, but is unlikely to include siblings, similar to existing law under the Family Medical Leave Act (FMLA). Trump’s proposal is even more restrictive with just six weeks of paid leave for mothers only and newborn child care only using existing unemployment insurance programs when employers do not provide the benefit. This article fact checks candidate’s statements on these topics, and summarizes their family leave proposals in the following chart.

http://cdn.factcheck.org/UploadedFiles/2016/09/family_leave_policies_chart1.png

http://cdn.factcheck.org/UploadedFiles/2016/09/family_leave_policies_chart1.png

Although it has not been a focus this election season so far, we are hopeful that the current conversation about paid family leave policies can be expanded to consider the broader needs of family caregivers, including paid leave and flexible work arrangements as well as other types of support and training. We also believe that the definition of family caregiver should be expanded to include siblings and others who provide unpaid care to family and friends. Otherwise, unfortunately, even if improved policies for paid leave or other support are implemented for the "typical caregiver", there are many of us that will be left in the same position and excluded from coverage under FMLA or similar laws. Two more presidential debates are coming up on October 9 and October 19, so we'll be watching to see if the candidates share any more details about their plans to support family caregivers.