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.

 

Support Networks vs. Support Groups

For some EB patients and their families, taking part in a support group or EB-specific community online, by phone or in person, may be second nature, but for others, the very idea of putting yourself out there—sharing your story, your struggles or insecurities—may be viewed as a frightening, stressful concept.

Every family is different, and sometimes I’ll work closely with some families who feel that facing EB on a daily basis as a patient, caregiver or family member is a private matter and not one that they choose to share with others around them. I respect their wishes and offer as many different resources as I can think of to provide some kind of assistance of a physical or financial nature. But I always encourage families to build a strong social support network and not dismiss the true power of interacting not only with those who understand firsthand the ongoing challenges that a life-threatening disease like EB can present, but also with those in your social circles (friends, co-workers and neighbors, for instance) who can provide a different level of support, guidance and understanding in their own unique way.

The Mayo Clinic notes that such a strong social support network can offset loneliness and stress, something that EB patients and their families who may experience feelings of isolation know all too well, and provide reinforcement and comfort in their time of need. I’ve had families tell me that they sometimes feel all alone because they are not able to do many of the same things that other families can do with ease, such as travel or play outdoors with their children as often as they’d like, because there are so many safety concerns and preparations that must take precedence and understandably so. But reaching out to your community and finding ways to be active even in small ways—like joining a walking group, visiting your community center regularly or making an appointment with yourself to go to the gym a few days a week—can provide a much-needed outlet for social interaction and a feeling of security.

Where a strong social network can offer a feeling of security and a sense of belonging, a support group may offer EB families an opportunity to truly make the direct connection with others who can identify with caregiving challenges they face on a day-to-day basis or emotional issues tied to the disease’s repercussions. For many, support groups can become a foundation to begin healing as they come to terms with this devastating disease that takes such a toll not only on the patient but also on the family members.

Have you looked into joining a support group or even forming one yourself? You can meet in person once a week or a few times per month. Have you investigated whether or not your local hospital may offer a support group that, while not EB-specific, may include other families who are coping with daily health challenges as your family does? Do you feel a support group may be right for you?

The benefits of a support group can be great, from helping a group’s members overcome their feelings of isolation to giving them a supportive environment where they can talk openly and freely about their challenges and even learn from each other. As the Mayo Clinic points out, a support group should never replace traditional medical care but it can be a helpful coping tool. While there are a variety of formats that a support group can take, the ultimate purpose is usually the same: to allow people with similar problems have a place to express themselves and offer practical advice and emotional support.

To learn more about EB support groups, you may want to visit DebRA’s support resources page for information about what groups are currently established across the country or even inquire inside the EB Friends forum. And don’t be afraid to reach out in the EB Resource Facebook community to ask others about other EB support resources that are available both as in-person and online networks.

Sources:

Stress Management – Support Groups: Make Connections, Get Help, Mayo Clinic

Stress Management – Social Support: Tap This Tool to Combat Stress, Mayo Clinic

Support and Resources, DebRA of America

EB Friends

EB Resource, Facebook

Related Posts:

Join the EB Resource Conversation

The Importance of Connecting

What to Expect in Support Groups

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?

Sources:

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

Stress Management for Caregivers

*The following suggestions 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 your personal health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.

 

For many of us in households where managing EB is part of our daily routine, serving as a caregiver or support resource is just an expected role we take on. As we become more and more involved in our caregiving responsibilities, it can be quite common for those serving in these roles to neglect their own health and wellness needs or ignore high stress level indicators.

The American Stress Institute acknowledges that there is no single agreed upon definition of stress. Often its definition can be subjective. However, some of the most commonly accepted descriptions of stress define it as “physical, mental or emotional strain or tension” whereby “demands exceed the personal and social resources the individual is able to mobilize.”

The real key to the last part of that definition is that demands exceed resources. As caregivers, we may have no control over weight of those demands, so it’s essential to build up a foundation of personal and social resources to be prepared for the toll these stresses– in whatever form, duration or size – can take and to avoid caregiver burnout.

Here are some helpful strategies to help build these stress management resources.

  • Commit yourself to sleep. Be insistent that you get a proper night’s sleep. The Harvard Medical School Division of Sleep Medicine reports that there’s a close connection between sleep and mood, and that poor or inadequate sleep can lead to irritability and stress, whereas what was deemed a “healthy sleep” could enhance well-being.
  • Keep moving wherever and however you can. The Mayo Clinic suggests finding even a small window of time most days of the week for some kind of physical exercise – a morning swim, a mid-day walk, an evening bike ride – which can be good for both a healthy body and mind, as well as serve as a natural de-stressor.
  • Eat healthful foods. According to the Mayo Clinic, making sure you include plenty of fruits and vegetables in your diet can help you get the recommended daily allowance of vitamins and minerals for you to maintain the energy necessary to keep up with the typically demanding schedule of a caregiver. The National Institutes of Health also suggests following a low-sodium diet to reduce the risk of high blood pressure and hypertension, which can accompany high-pressure and high-stress roles like caregiving.
  • Stay social. Keep in touch with family and friends and don’t isolate yourself. The Mayo Clinic notes that sometimes it can be helpful to make arrangements to meet up with others outside of the home. Consider teaming up with a walking buddy to combine both exercise and socializing if time is truly limited.
  • Ask for help and accept it graciously. Some of us may have inherited certain beliefs that we must do everything on our own. But when caring for a loved one or good friend with an illness like epidermolysis Bullosa, it’s important to recognize that we may not have all of the resources or tools necessary to go it alone. Reach out to others, suggests the Mayo Clinic – those who can offer advice, outright help, or support in some other form.
  • Find a support resource to tap into regularly. It can be a formal support group or even an informal in-person or online gathering of individuals who may be facing similar challenges as caregivers, though it may not be specifically tied to EB. The Mayo Clinic points out that support groups can be a great place to make new friends. Check with local hospitals and community centers for any formal meet-ups or upcoming workshops that could be beneficial. Opportunities to share and learn from others can provide a much needed stress outlet.

Sources:

Mayo Clinic, Caregiver Stress: Tips for Taking Care of Yourself

The American Institute of Stress, Definition of Stress

National Institutes of Health, Hypertension

Harvard Medical School, Sleep & Mood

Related Posts:

Free EB Information Resources

The Facts about Depression

Identify and Manage Caregiver Burnout