Caregiver Stress: What You Should Know

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.


When we take care of others, it’s easy to forget to mindfully take care of ourselves. We’ve gathered some valuable information from helpful resources in the healthcare community to remind us of who can be most vulnerable to caregiver stress, what signs to look for, and what we can do to try to safeguard our own health and well-being from stress.


Who is at risk? The Mayo Clinic staff points out in a piece titled “Caregiver Stress: Tips for Taking Care of Yourself” that there are factors that can make us especially susceptible to stress as caregivers. Among these factors are the following: being female; living with the person we are caring for; social isolation; financial difficulties; higher number of hours spent caregiving; and lack of choice in being a caregiver.


According to The U.S. Office on Women’s Health, in its Caregiver Stress Fact Sheet, 61% of caregivers are women. I certainly see it on a regular basis myself out in the EB community and at events. I meet up with parents who have chosen to be their child’s primary caregiver, and often that parent is the mother. But let’s not forget that there are fathers who are primary caregivers, too, and they are also very susceptible to stress.


The U.S. Office on Women’s Health goes on to note that 59% of informal caregivers have jobs in addition to the time they invest in caring for another person. Due to their caregiving commitment, more than half of these employed women caregivers have adjusted their work schedule to either leave early, arrive late or reduce their hours. Making changes like that on top of the existing stress of the caregiving process can put added stress on an individual or her family already facing existing life balance challenges as well as the financial strain from mounting healthcare bills. Adding to that a possible decrease in income may only compound the stress for that caregiver.


So how can we identify the early signs of stress? In that same article, the Mayo Clinic notes the following indicators that stress may be settling in for you as a caregiver:


  • Feeling overwhelmed or constantly worried
  • Feeling tired much of the time
  • Too much or too little sleep
  • Gain or loss in weight
  • Easily irritated or angered
  • Loss of interest in activities we once enjoyed
  • Sadness
  • Frequent headaches, body pain or other physical ailments
  • Abuse of alcohol or drugs, including prescriptions


Many of these probably sound familiar to a lot of us but to a caregiver they can be a particularly dangerous red flag that stress has taken over because it is hard to care for someone else if we put our own health in jeopardy. We must get our own stress under control first and learn how to manage the challenges we face before we can be the steady, calm source of care and comfort as a caregiver to a loved one relying on us for support.


What can we do to better manage our stress as caregivers? WebMD offers some helpful suggestions in its article “Tips for Managing Caregiver Stress” of things you can do to help reduce or control stress levels. Relaxation methods like guided imagery, mind relaxation, deep breathing and biofeedback, among other techniques can strengthen the mind and body to weather the physical storm that stress can deliver to slow down or set back any caregiver, especially one trying to balance work outside the home with caregiving at home. And nothing tests our emotional fortitude like watching our children facing pain on a daily basis pain and trying to overcome their own physical and emotional challenges.


The greatest advice I would give any caregiver personally would be to ask for help. Sometimes we can be wary of asking others for even the smallest shred of support but there are people out here in the community, as families, healthcare professionals and those of us in the wound care field who may have witnessed and experienced EB from a number of vantages. We are all here to provide whatever guidance, comfort, answers or support we can. Never let the stress of caring for your loved one lead you to feeling isolated. You are not alone.


Caregiver Selection Checklist

Many of us after learning of an EB diagnosis of a child must then take on the responsibility of becoming a primary caregiver for our loved one, either alone or with our partner or another family member. Sometimes, however, it becomes necessary to bring a third-party caregiver into the home. If you have not been faced with making such a decision before for another family member such as a parent or grandparent, it can be a daunting one.

Here is a brief list of suggestions to get you started as you pose questions of potential candidates and do your research:

  • Check with your physician or other specialists who are involved in your child’s care for any recommendations they may have.
  • Contact your local chamber about any medical facilities or caregiver organizations based in the area as another resource worth investigating further.
  • Ask friends or other family members who may have selected a caregiver for a relative in the past for some basic advice on making the selection, keeping in mind that their caregiver may not have faced the same types of challenges as an EB caregiver will need to endure.
  • Talk to other EB families online for their own input on selecting a third-party caregiver, such as here in the EB Resource forum or other online communities you may be a part of.
  • Reach out to other care experts for any other advice on the caregiver selection process such as the DebRA nurse, a national caregivers’ support network or contacts you may have at a medical facility where your loved one may have received care.
  • Ask the caregiver for references specific to working with those facing rare diseases and someone in your loved one’s age group.
  • Explain what you can about epidermolysis bullosa to the caregiver candidate and ask them to do some homework on their own about EB, arranging for a discussion a week later to gauge how well they understand what this disease will entail for the care process and the emotional toll it can take on the patient, the family members and the caregiver.
  • Request information specifically about wound care experience and background, and inquire about what wound care suppliers they are familiar with.
  • Ask for their expectations as a caregiver and be sure to communicate yours openly and thoroughly during the interview process.
  • Make a point for your significant other and any other family members involved in the care process to meet the potential caregiver and be involved in the interview process.
  • Give your loved one an opportunity to interact with the potential caregiver to not only see that candidate’s communication style and “bedside manner” but also to see your loved one’s own reactions to the candidate.
  • If your interview process is a positive one, suggest a trial basis of a few days or a week to test the new caregiver relationship.

These are just a handful of suggestions and by no means, a complete list. Perhaps you can offer some tips of your own for this selection checklist. What are some other key questions or areas of inquiry that you suggest to someone looking to hire a third-party caregiver for their loved one diagnosed with EB?

Special Care Deserves Special Thanks

Has someone been a big help to your family? Let them know.

Last week was Thanksgiving, and we certainly hope that everyone had a beautiful, peaceful holiday with their family and friends. This time of year can leave us darting from one store to another and completing one task to the next on our lengthier than usual to-do lists. We wanted to remind everyone that in addition to being thankful for our loved ones, it is also a wonderful time to remember those who pay special care and attention to look after the safety and well-being of our greatest treasures of all — our kids.

Many parents of children diagnosed with EB are often their own child’s caregiver and handle much of the daily care routines, such as bathing, bandaging and meal preparation, but there are some families who may employ the support of a part-time or full-time caregiver or who turn to other members of the family or close friends to help in a number of ways to provide support and care. We know it’s so easy to lose sight of just how important this added support is, particularly when as a mom or dad, your only areas of focus for your child diagnosed with EB are their safety, comfort and happiness. And when it comes to these supporting figures – whether they are registered or trained medical personnel or simply loving, caring friends or family members who want to lend a hand – the value of what they do for you and your child is immeasurable.

So we say why not surprise them now with a token of your appreciation for all they do? After all, isn’t Thanksgiving the perfect occasion to express this gratitude? Don’t worry that the official “Turkey Day” was last week. Your message and your thankfulness will ring through loudest of all falling between two of the busiest and most distracting holidays all year.

Think about the member or members of your care support team for your child — do they have any particular hobbies or interests, favorite products you know they’ll enjoy or a place they’ve mentioned wanting to try for dinner, a manicure or a spa treatment? Maybe they’ve talked about a new book they want to read or how they don’t get an opportunity to go to the movies like they did before. This could be the ideal time to tell them thank you in a uniquely personal way that lets them know that you don’t take for granted what they do to help you and your child. In the process, you are offering that special person a chance for a little down-time and de-stressing, especially important to someone in such a stressful line of work or who has taken on added responsibilities to show their support for you and your family.

Have any of our community members done something like this to show their caregivers or other support resources appreciation? If so, tell us how you remembered them and what their reaction was. We’d love to hear from you.


Support Resources for Caregivers

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

Many of our community members serve as caregivers on a daily basis for their loved ones. It’s not an easy thing, truly a 24-hour-a-day job, and can increase the caregiver’s own health risks for physical and emotional stress or outright burnout. We’ve begun a list of possible support resources that could be helpful to you. As always, be sure to do your homework and ask around in our community here, as well as among other forums or groups you may interact with regularly. They may have some other tools to suggest.

  • A journal. Some caregivers find that a great stress relief tool is writing everything down. Sometimes just having a place to vent and pour out your thoughts and feelings can do wonders. If you prefer to keep your thoughts to yourself or share with just one or two other people close to you, consider picking up an inexpensive but inspiring journal or notebook at the bookstore or even dollar store. The National Caregivers Library offers tips for how to set up your journal or workbook and what topics to tackle to provide a good sound board for yourself.
  • A blog. On the other hand, if it’s more important to you to start a conversation with others facing similar challenges – to discuss care issues, for example, or ask others about particular topics – then an online journal or blog is the way to go. The EB community has a strong, supportive network of bloggers worth checking out, those willing to share their lives not only with others unfamiliar with EB to educate and raise awareness, but also with those of us who are or have been personally touched by EB. We frequently make suggestions for bloggers to follow, but we want to hear from you: who are some of your favorites to recommend?
  • Online communities. Interacting with people across the country – across the world! – has never been easier thanks to wonderful tools like Skype, virtual “neighborhoods” such as Facebook communities like ours and web forums like EB Friends. For caregivers, just being able to reach out – to pose a question, ask for a recommendation or vent – can be such a great stress relief.
  • National caregiver-focused organizations. Groups like the National Family Caregivers Association and the National Alliance for Caregiving are available to provide helpful information and other support resources on their website and through literature and presentations from their organization. We found their Family Caregiving 101 site to be especially useful.
  • Support groups. While you may not locate a group specifically geared toward EB or, if you have a small child, a support group for parents of children with life-threatening conditions or diseases, it is very possible that a local hospital may have a caregivers support group. Sometimes just talking with others about their strategies for staying strong, healthy and focused can be beneficial.
  • Neighborhood sidewalks, area parks, the gym or your local Y. Simply getting up and walking or taking part in some form of aerobic exercise is truly one of the best things you can do for yourself as a caregiver. highlights a number of great activities beyond walking to get you moving and help alleviate tension, including dancing and yoga. So channel that stress through physical activity and do something good for your body, mind and spirit. You’ll help not only yourself but also the loved one you are caring for.


Resources for Caregivers

Being a caregiver can be a stressful and demanding job, yet to those with EB, the role is truly a critical lifeline. We’ve gathered a list of some online resources that may be worth checking out. These sites can offer helpful information, links to organizations that specifically provide support to caregivers, and practical tips about managing the care of others, stress management and self-care, as well as other relevant topics.

*The following links are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of a medical care or mental health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

Do you know of any additional resources to suggest to any caregivers who may be reading? If so, please comment here at this blog or at our EB Resource Facebook community and thanks in advance.

The Rosalynn Carter Institute for Caregiving
The Family Caregiver Alliance
Family Caregiving 101
“Taking Care of You: Support for Caregivers,”
The National Family Caregivers Association
Caring Today Magazine
Today’s Caregiver Magazine
Caregiving in America Magazine

Related Posts:
100 Links for EB Families
Support Networks vs. Support Groups
Becoming a Proactive Caregiver

Becoming a Proactive Caregiver

Sometimes, the greatest frustrations for EB patients and their families come from the inability to get questions answered due to the limited amount of information available about epidermolysis bullosa. Many people we’ve interviewed here, who have shared their own EB story at our blog, have echoed this sentiment.

As caregivers and loved ones, we must use every opportunity possible to seek out information and answers from those equipped to help us with wound care concerns or lifestyle challenges. Whether it’s the patient’s first appointment since being diagnosed or a periodically scheduled follow-up visit, a caregiver’s responsibility is to always show up prepared when meeting with specialists and provide as much detailed information as possible to enable physicians to suggest solutions. Here are some tips gathered from the Mayo Clinic and the Stanford School of Medicine, as well as our own experience, for doing your part.

  • Arrive with a list of questions for the doctor to make certain you get the opportunity to discuss your key concerns.
  • Complete any paperwork requested by the clinic or doctor’s office and have this information available upon arrival.
  • Bring along contact information for the patient’s primary care physician and general medical history.
  • When meeting with a physician, particularly a new specialist, have handy any other important medical information about the patient, such as allergies, medication list, vitamin regimen, and other diagnosed conditions.
  • If there are any new symptoms, conditions, or changes to the skin with blistering or irritation, relay this information to the specialist. Be sure to note when it occurred, duration, and any other details.
  • Bring along a personal supply of wound dressing materials for re-application at the end of the appointment.
  • If you anticipate the discussion will include an introduction to new treatment information or test results, ask a close friend or family member to join you to ensure you take away all pertinent new information.

What other proactive steps can you take as a caregiver when meeting up with doctors and specialists?


Preparing For Your Appointment, Mayo Clinic

Epidermolysis Bullosa Clinic Visits, Stanford School of Medicine-Dermatology

Related Posts:

Stress Management for Caregivers

Free EB Information Resources

Identify and Manage Caregiver Burnout

Identify and Manage Caregiver Burnout

EB caregivers and parents who choose to take on the primary caregiver role for their own children can find themselves experiencing elevated stress, fatigue, anxiety and depression. According to WebMD, caregiver burnout is a combination of physical, emotional and mental exhaustion that can be identified by some common symptoms:

  • Loss of interest in favorite activities and hobbies
  • Irritability
  • Changes in appetite and/or weight
  • Greater frequency of illness
  • Feelings of helplessness, hopelessness and/or depression
  • Changes in sleep patterns

So what are some strategies for managing the stress of being a caregiver to minimize the impact of physical and mental burnout? The National Women’s Health Information Center offers specific tips to help reduce stress and combat exhaustion:

  • Make time to be physically active each week by blocking out ten minutes a day to exercise. If it’s possible, take part in the activity with your loved one, like a short walk, to enable both of you to experience the physical and mental health benefits of exercise.
  • Reach out for help. Ask your spouse if he/she can help you a few hours a day or few days a week or see if a sibling or grandparent can step in to provide limited relief when needed. Also check with community caregiving resources for any additional support that might be available.
  • Join a support group, if possible specific to the disease for which you’re providing daily care and treatment so the group can offer not only emotional and spiritual support but practical caregiving strategies and suggestions, too.
  • Eat a well-balanced diet that includes vegetables, fruits and whole grains so you’re able to stay healthy and energized.
  • Get proper sleep and if necessary, consider hiring overnight caregiving services for part of the time to allow appropriate rest for your daytime care responsibilities.
  • Make time for yourself at least once a day, even in some small way like a short nap, yoga or meditation time-out, neighborhood walk or relaxing bath.

As a caregiver, you only help your loved one further by staying rested, healthy and informed. Give yourself whatever attention is necessary to allow you to carry out your responsibilities as a caregiver in the fullest capacity. Know the signs of burnout and create a daily schedule that works toward minimizing stress and physical and emotional drain as much as possible.


The National Women’s Health Information Center

Related Posts:

What to Expect in Support Groups
Clinical Resources for Caregivers and Healthcare Professionals
Caring for the Caregiver