Managing Caregiver Stress


“He is not able to help as much with the kids as I would like. It stresses me out when they want something or they are fighting and I am trying to work, but he is lying on the couch.”

“When she is sick I worry all day, even while I’m at work.”

“His health went downhill so fast. I’ve had too many days of 12 hour work days and then coming home to the reality of not knowing how many days he has left.”


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Understanding Caregiver StressPatient and Caregiver

Caring for your loved one who has PH can be stressful, and this stress may begin well before your loved one receives the diagnosis of pulmonary hypertension. The journey to diagnosis, understanding your loved one’s condition, and adapting to life as a PH caregiver are each major stages with their own unique stressors. This stress may accumulate, putting caregivers at risk for burnout and depression. Recognizing the stress that caregivers experience at each stage is an important step in understanding and finding ways to cope with caring for your loved one with PH.

Seeking a Diagnosis

The process of diagnosis can be very stressful. It may take several months or years for your loved one to be properly diagnosed. These years are very likely frightening, frustrating and difficult for both the patient and caregiver as they encounter new symptoms, struggle to adapt to an uncertain present and future, and explore a series of possible diagnoses and new medications. When the patient is finally diagnosed with pulmonary hypertension, many caregivers experience a moment of relief at finally being able to put a name to their family’s struggle.

Diagnosed at Last

Unfortunately, a diagnosis of pulmonary hypertension may, in some ways, feel inconclusive in itself. For many caregivers, the cause of their loved one’s PH remains a mystery and there is no clear prognosis. Caregivers frequently report feeling overwhelmed by information as they learn about pulmonary hypertension. It is also common for caregivers to experience grief as they struggle to accept the uncertainty of their loved one’s illness. As one caregiver put it, “It just seems unbelievable to me that in this day and age my wife has this horrible disease with so much unknown about it.”

Returning to Daily Life

Returning to daily life, while incorporating care for your loved one, may be a struggle. Your loved one’s PH may impose significant life changes on you and your family: you may have moved to a new location to be at lower sea level or closer to PH specialist; you may have become the primary breadwinner if your loved one had to stop working or cut back on work hours; you may have new medical expenses. If the patient is your parent or adult child, he or she may have moved in with you and your spouse. Even smaller changes add up, and you may have many new responsibilities, including handling chores your partner took care of prior to diagnosis, fitting in appointments and medication management on top of your regular routine, and explaining pulmonary hypertension to relatives and friends who may not “get it.”

On top of all the changes to daily life, caregivers also experience changes to their world views and future plans that can be disorienting and stressful. The uncertainty of chronic illness requires a shift in outlook that can be a difficult adjustment. One husband to a PH patient shared, “It is sometimes hard to plan in advance because she could have a ‘bad PH day’ and not be able to leave the house.” Many caregivers are also forced to reconsider plans for retirement or family trips. “My wife is just shy of 50 and was just diagnosed with PH,” said one caregiver. “After killing ourselves for so long and finally getting to the ‘us’ time, now this. Our younger son graduated college recently and we were looking forward to spending some time and money on us for a change.”

The Myth of the Super Caregiver

For some caregivers, the biggest source of stress comes from within. Many of us have a sense of the person we’d like to be, and for caregivers who are wearing many hats (spouse, parent, employee and caregiver, just to name a few), it’s not uncommon to set lofty expectations that can be difficult to meet. A sister of a PH patient told us that she feels disappointed in herself when she fights with her sister, because that’s “not how a good caregiver would act.” A husband of a PH patient told us he never goes out with his friends because it would make him feel too guilty. The wife of a PH patient said she feels stress because she needs to take so much sick time to accompany her husband to his PH appointments. Even when she’s able to meet her expectations for herself as a wife and caregiver, she’s not able to meet her expectations for herself as an employee.

All of these caregivers feel stress because they are comparing themselves to a mythical creature, the “Super Caregiver.” The Super Caregiver is everything to everyone at all times. The Super Caregiver works full time, makes meals, takes care of all the shopping and household chores, pays the bills, spends lots of time playing and chatting with everyone in the family, and does it all with patience and a smile. The Super Caregiver never yells, nags or gets frustrated. Everyone’s idea of the Super Caregiver is a little different, but the thing that all Super Caregivers have in common is that they aren’t real.

Take the time to think about the expectations you’ve set for yourself and whether they’re realistic given everything on your plate. Many caregivers beat themselves up for normal and necessary reactions to stress, like expressing frustration or prioritizing one task at the expense of another. Rather than making stress go away, this type of negative self-evaluation can actually send your stress levels through the roof.

Risk for Caregiver Burnout

Stress can be cumulative. The long path to diagnosis, the adjustment to a diagnosis of pulmonary hypertension, and the strain of adjusting to a new life as a caregiver can all add up to make you feel like you’re on a never-ending roller coaster with no opportunity to step off. Many caregivers experience “caregiver burnout,” a state of mental and emotional exhaustion that results from ongoing levels of stress and suboptimal self-care. Burnout may be accompanied by increased anxiety and can be an early sign of depression.

Adapting and Moving Forward

Providing care for your loved one includes self-care. It’s important to recognize the early warning signs of stress so you can make changes before you become overwhelmed. Our emotions are great teachers, but some, like anger, guilt and depression, can be very uncomfortable. It can be helpful to see such emotions as signals that your stress level has increased and that you need to make a change or ask for more help. Read on for tips for coping with caregiver stress. If you think you may be depressed, contact a medical professional or read more about recognizing signs of depression.

Allow yourself to grieve. Grief is a normal reaction to loss — including the loss of your plans, expectations and carefree lifestyle. Caregivers sometimes express bafflement and frustration that they are grieving, but this is a normal, healthy response. Acknowledging your grief is healthier than locking it away.

Live for today. While you and your loved one do need to make plans for a wide array of possible scenarios, don’t spend time dwelling on your loved one’s prognosis. “My loved one had a very poor prognosis from the doctors,” says a caregiver. “He lived five more years with PAH than the doctors predicted, and we did a lot of living. So don't give up hope. Live your life to the fullest so you don't have to wish you had.”

“You can't base your day on thinking ‘how much time she has here,’” another caregiver adds. “Let it be more like ‘where should we go out to dinner today?’”

Stop trying to be the “Super Caregiver.” Think critically about the standards to which you hold yourself and if they’re not realistic, adjust them so they are. When you fall short of your expectations, cut yourself some slack. Nobody’s perfect. Even the best caregivers occasionally find themselves getting impatient, stressed or frustrated. Learn to think about these feelings as cues that you need some time to yourself, not as evidence of failure.

Schedule some you-time. “It's very easy to give up everything that's important to you and give all your energy to the PH patient,” describes a caregiver. “This leads to extreme stress, physical fatigue, and even anger. Try to find a few hours per week that are just for you. For me I have a few hours on Saturday and Sunday mornings before my husband gets up and I sit, drink my coffee, watch my reality shows, and cross stitch. This re-energizes me and I am doing something I love that I can't do when my husband is awake.”

Take five-minute breaks. You might feel like you have no time to practice stress-relief. The good news is that a little goes a long way! Even five minutes can be enough to help you de-stress and return to your day feeling stronger and refreshed. Try these quick five-minute stress relief exercises whenever you need a boost:

  • Breathe deeply and slowly, in your nose and out your mouth. When we’re stressed, we breathe poorly and receive less oxygen. Breathing exercises increase our oxygen intake, which helps us relax.
  • Yoga has been shown to have a beneficial effect on stress levels, and it’s easy to do this in your office or living room. Look up a quick YouTube video and spend a few minutes in downward dog!
  • Take a brisk walk. We all know that exercise is good for us, but when someone becomes a caregiver, it may be one of the first things to go. If you don’t already exercise or if you’ve given up your routine, the Family Caregiver Alliance recommends walking because, in addition to its physical benefits, it can reduce tension.
  • Exchange a laugh with a friend. Nothing resets your mood like a good laugh. Are you all by yourself? Hop online and find your favorite comic strip, or sign up to receive a daily joke via email.

Set self-care goals. Are you having trouble fitting in even five-minute breaks? Set goals and take immediate action to put them into practice. Your goals can include taking a break from caregiving, getting help with your caregiving tasks and doing things that promote your own good health. You can start with a small goal, such as taking five minutes at lunchtime to practice breathing, or a larger goal, such as taking a night off or planning a vacation. Either way, lay out action steps to make your goal attainable. Put your break on your calendar or call a friend to schedule your night out.

Maintain a network. Family, friends and other caregivers can all play an important role in helping you manage stress. Schedule in regular coffee dates and phone chats with people you enjoy spending time with, and encourage your loved one to do the same. Friends and family can be an important source of support when you and your loved one need a break from the “PH world.” Other times, it can be helpful to talk to someone who can relate to your experience as a PH caregiver. Connect with other PH caregivers at a local support group, via email, or on PHA’s monthly Caregivers Telephone Support Group (see Additional Resources).

Ask for and accept help. As one caregiver put it, “PH is an uphill battle. Sometimes PH requires more than just one person to help a patient accomplish what would be an easy task for healthy people.” People really do want to help you, but they need to know how. The following guidelines can help you effectively ask for help:

  • Consider the other person’s abilities, interests and availability.
  • Don’t ask the same person for help repeatedly.
  • Prepare a list of things that need to be done and let the other person choose what suits him or her best.
  • Be prepared for a “no,” or hesitation. Accept it, but if the person gives you an opening, ask another time.
  • Don’t weaken your request — be clear about what you need, including how important it is to you and the amount of time that help would be needed.

Keep in mind that even small things add up! Some things that may seem as minor as asking your neighbors to add a few items to their grocery list for you, to take your trash cans to the curb, or to double a recipe so half of it can go into your freezer for a busy week don’t take much time but can make your day go more smoothly.

Be prepared. “Think through the potential emergencies you may encounter at home and consider in advance how you will deal with them,” suggests a caregiver. “For example, if your PH patient needs oxygen and you live where ice storms, snowfall, or other things can cut roads and power for extended periods, consider contacting your power company about obtaining a standby generator.” Being prepared will help you cut down on “what if” thinking and anxiety.

Communicate with your loved one’s medical team. As a member of your loved one’s healthcare team yourself, it is important that you build a relationship with his or her medical professionals. PH-treating doctors and nurses want to understand what they can do to help train you on your loved one’s complex PH therapies. They also want to know how caregiving is affecting your own health and well-being so you can be the best PH caregiver you can be.

Additional Resources

Information from PHA

Books and Web Links

Support Resources

Reviewed by Allyson Rupp, LCSW, of the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford in Stanford, Calif.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: March 2012

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.