• Educate Yourself
• Learn everything you can about PH and PH treatment.
• Stay current on PH research and breaking news.
• Keep an open line of communication with your loved one’s doctor. Ask questions, especially if you don’t understand why something is being done a certain way.
• Get trained in line care and medication management by your loved one’s medical team.
• Ask your local hospital about any training they provide or recommend for caregivers of patients with heart or lung conditions.

• Anticipate future needs – financial and logistical.
• Make sure important paperwork is in order. Help your loved one compile a binder to organize information about appointments, contacts, treatments and medical tests.
• If your loved one is on intravenous therapy, make sure you always have the following on hand:
  • A thermometer (a fever can be a symptom of infection)
  • A back-up pump
  • A catheter repair kit
  • A blood pressure monitor to provide your loved one’s doctor with vital information over the phone
  • A small, portable cooler box or bag and large ice packs to store medicine when you’ll be away from a refrigerator for a few hours
• If your loved one requires supplemental oxygen, be sure to have the following:
  • An extra prescription from your loved one’s doctor and a photocopy in your purse or wallet
  • A portable E-tank and flow regulator for power outages
  • A spare nasal cannula, since they wear out quickly and are easy to damage. Some portable tanks require special cannulas
  • An extra section of oxygen tubing and extra connectors
• Keep detailed lists of what you do on a daily, weekly and monthly basis so if you ever need someone to fill in for you in a pinch the to-do lists are ready in advance. Include the steps in any process that isn’t self-explanatory, like changing your loved one’s medication or pump.
• Write out an emergency plan so if you ever find yourself in an urgent situation your family will be aware of the sequence of steps to follow. Talk to your family about the plan and what each member can do to help in the event of an emergency.
• Keep a caregiver’s log, journal or diary – refer back to see what works well and what does not.

• PH may take an emotional toll on the PH patient in your life. Your unwavering love and support can help them get through the tough times. Don’t set unrealistic expectations for yourself about being cheerful and energetic 24 hours a day, but do your best to focus on the positive when your loved one is feeling low. It can help to sit down together and set goals so you both have things to look forward to.
• Take every day as it comes. You can do your best to plan for tomorrow, but sometimes things come up that you can’t predict, and that’s okay.

• Respect your loved one’s right to make decisions about his or her own life.
• Encourage your loved one to do the things he or she can do independently. Don't rush to do things he or she can do just as well without you.
• Give your loved one space when needed. Use this time to tend to your own physical and mental needs.

Depression is an illness that affects millions every year, but there’s no blood test for depression and no virus that scientists can study under a microscope. Depression can affect how a person acts, feels and thinks, and yet many people don’t realize they are depressed until they’ve been living with the symptoms for a very long time. It’s also unusual for someone suffering from depression to go to loved ones to ask for help. That’s why it’s so important for everyone in a family affected by PH to understand depression and stay alert to the symptoms in the patient, the primary caregiver and other family members.

As you watch for symptoms of depression you are looking for changes in behaviour that present themselves over an extended period of time. If the person you are caring for has always cried during sad movies and continues to do so, this might be less significant than if this behaviour developed after being diagnosed. If the crying lasts only for a few days, this might be less significant than if this behaviour continues on a near-daily basis for a period of several weeks or more.

A few of the key symptoms of depression are

• Feelings of sadness, numbness, or emptiness nearly every day Depression may feel like a dark cloud that can make everything seem hopeless. Be aware of any irritability or lack of humour. Not everyone expresses these feelings in words. Pay attention to non-verbal cues, such as crying or shutting off from family more often than is normal compared to past behaviour.
• Markedly diminished pleasure in almost all activities Be particularly aware of a loss of interest in things your loved one used to enjoy such as exercising, cooking or hobbies. Sexual interest may also decrease.
• Significant weight loss or weight gain, or decrease or increase in appetite In children, consider failure to make expected weight gains.
• Insomnia or excessive daytime sleeping nearly every day Recent research shows that about 80% of people with depression also suffer from insomnia and that 15% of people with depression sleep too much. Fatigue nearly every day. Depression can make the activities of daily life almost impossible because it consumes an enormous amount of energy. Be aware of changes in the amount of energy or number or intensity of tasks your loved one seems able to handle. This may present itself as an inability to keep up with everyday grooming, work, shopping and household chores. Keep in mind that in patients, increased fatigue, weight changes and sleep trouble related to depression may be mistaken for worsening symptoms of PH.
• Feelings of worthlessness or excessive guilt nearly every day These feelings are often inappropriate to the situation. Someone who is depressed might feel guilty for things they have no control over, including getting ill in the first place.
• Diminished ability to think, concentrate or make decisions Depression can make it hard to think clearly or pay attention to tasks and conversations. Even simple choices can feel overwhelming. Notice if there is difficulty completing tasks such as deciding which medication to take or if there is frustration built into even simple decisions, like which sweater to wear or magazine to read.
• A feeling of being completely alone People suffering from depression frequently isolate themselves and pull away from loved ones. Take note if your loved one begins avoiding conversations and wants to be alone more than usual.
• An inability to relax More than half of the people diagnosed with depression also suffer from anxiety. Someone who is depressed may find it difficult to kick back and stop worrying, even for short periods of time.
• Thoughts of death and suicide Some people wish that they were dead, feeling that the world would be better off without them. Others make very explicit plans to hurt themselves. One of the best ways to prevent suicide in someone who is depressed is to recognize these warning signs of suicide and always take them seriously.

As a PH caregiver, you may be the first to recognize that your loved one is in need of help. In some cases, however, the opposite is true. Caregivers and other family members sometimes find that they are too close to the patient to recognize the symptoms of depression and take action. It’s common to confuse symptoms of depression with irritability, laziness, fatigue related to the patient’s PH, or sadness that’s “to be expected” in someone with a serious disease. If your loved one is newly diagnosed, you may assume that this is the way life with chronic illness has to be. This is simply not the case. Many PH patients have overcome periods of depression brought on by diagnosis, changes in health status, and other environmental and circumstantial factors to live meaningful and fulfilling lives.

Many loving and concerned caregivers are distraught to find that it does not always come naturally to be supportive when a loved one is exhibiting symptoms of depression. Some worry that if they interact with a depressed person too much, they will slip into a depressed state too. Others simply find themselves frustrated and unable to relate. Human beings want to respond to the suffering of others by listening and providing physical and emotional support. This support may come naturally when the suffering is due to clear and observable symptoms, such as those experienced by a person suffering from a physically debilitating illness. When we can actually see the suffering, it is easier to relate and respond to that suffering.

With clinical depression, however, much like with pulmonary hypertension, an individual’s suffering happens mostly on the inside, with few visible outward signs besides exhaustion. It’s much more challenging to relate to the suffering a person experiences when depressed. Because you can’t always see depression, it is frequently confused by friends and family members with laziness or self-pity. Some caregivers will find themselves telling their loved ones to “snap out of it.” But expecting someone with depression to “snap out of it” is like asking someone with PH to “just breathe easier” or a person with diabetes to “just stop having high blood sugar.” Recovery is not a matter of will power. These are illnesses that take place at a cellular level and typically require the intervention of a health professional in order to improve.

If you notice any of the symptoms of depression in your loved one, it’s important to take action. As any other illness, depression can compromise an individual’s physical health. It can cause physical pains and aches, digestive problems, fatigue, sleeping problems, changes in weight and appetite, dizziness and light-headedness, all problematic side effects that may interfere with a PH patient’s already compromised quality of life. Furthermore, people suffering from depression are sometimes less likely to follow their medication regimens, which can seriously compromise a PH patient’s treatment plan. A PH patient suffering from depression must be treated for depression as well as PH and any other illnesses they may be living with. If the symptoms have been apparent for some time, talk to your loved one and your loved one’s PH-treating physician at the earliest opportunity.

PH patients aren’t the only ones at increased risk of depression. While caregivers don’t have to personally manage the physical symptoms of PH, a 2011 study revealed that their lives are just as affected in all other areas, including the practical, social and emotional arenas. In a PHA SA survey of PH caregivers, 42% reported that they sometimes felt sad or depressed. When caregivers are depressed, they often neglect their own needs due to the inherently unequal nature of the patient/caregiver relationship. In a recent survey, one caregiver wrote: "I am in therapy and I try not to let myself get too fearful, but I panic through every PH doctor appointment. I try to be strong for her, but I am losing it."

To be an effective caregiver and to notice signs of depression in your loved one, you must take care of yourself with the same intention and commitment with which you care for the others in your life. In fact, since you are taking care of (at least) two people, the effort to keep yourself physically and mentally healthy may be twice as challenging. Remember the flight attendant’s instructions as the airplane takes off: “In case of emergency, first place the oxygen over your face and then your child’s…” Caregivers who don’t pay attention to their own needs can experience caregiver burnout and be too exhausted, stressed or unfocused to help their loved ones. Try to develop a routine that includes exercise, stress management, a healthy diet, sufficient rest and time with family and friends who can support you.

If you suspect that you may be suffering from depression, anxiety or chronic stress, give your symptoms the attention they deserve. Read on for tips to help you and/or your loved one overcome depression.

Depression, though sometimes difficult to identify and understand, is an illness like any other, and symptoms will not go away on their own without attention and intervention. For stomach pain we can’t ignore, we go to the doctor. When depression begins to interfere with an individual’s everyday functioning (sleeping, eating, working or socializing), that’s a good indicator that it’s time to seek the help of a mental health professional.

Mental health professionals (psychologists, social workers and psychiatrists) use therapy, lifestyle changes and sometimes medication to help people identify and overcome difficult issues and negative thinking patterns. The goal of treatment is to help an individual reclaim a sense of control and rediscover pleasure and fulfilment in daily activities. Many people start by seeking out a psychologist or social worker, as these are the front-line therapists who can provide short- or long-term treatment. As therapists get to know their clients, they sometimes refer them on to psychiatrists who have the ability to prescribe and track medications.

The search for the right therapist can take time. Ask your loved one’s PH doctor, primary care physician, support group members, friends and insurance company for recommendations for good therapists in your area. Some therapists specialize in chronic illness and health-related depression, areas of expertise that may prove particularly helpful to PH patients and caregivers. Seek out a professional who you (or your loved one) feel comfortable with and who’s willing to get to know you before deciding on a course of treatment. This may mean interviewing multiple therapists in person or by phone. This process can be a bit like dating—not everyone is compatible, and the right match is worth the effort.

While professional help is a crucial component of depression treatment, you can also make lifestyle changes on your own to deal with symptoms between therapy appointments. Make every effort to treat yourself with the same compassion that you would treat a loved one. Remember that depression is an understandable response to a very difficult situation. Here are some suggestions for incorporating self-compassion and self-care into your life:

• Get in a routine It’s common for a caregiver to feel overwhelmed after their loved one’s diagnosis because their old routines no longer accommodate their PH-related responsibilities and reorganized priorities. Rather than living in reaction to the tasks and stresses that present themselves day in and day out, try to establish a new routine that incorporates your work, chores, meals, caregiving responsibilities and fun time. By structuring your day with pre-planned activities, it’s possible to slowly regain a sense of control over many aspects of your life.
• Take up good habits Maintain consistent sleep patterns, eat nutritious meals and exercise on a regular basis. Try stress-relief techniques like breathing exercises, muscle relaxation and yoga. If you’re having trouble finding the time, talk to your therapist about ways to incorporate small self-care activities into your daily schedule.
• Break the cycle of negative thinking You may find yourself experiencing feelings of self-reproach and shame as you come to terms with your depression. One PH caregiver told us that a year after her adult son was diagnosed, she found herself lying awake every night ruminating about what a bad mother she was. Over time, with the help of a therapist and a supportive family, she realized that these thoughts weren’t based in reality. Try to take notice when your mind starts to fixate on negative and unproductive thoughts. You may notice that these thoughts often come in a chain, with one leading to another and another after that. Some people find it helpful to recite a self-accepting statement, something like, “I’m trying my best, and that’s the best I can do,” to break this cycle.
• Build a network of supportThe support of family members and friends can make a big difference in the speed and success of your recovery. It’s also a good idea to connect with people who can relate to some aspects of what you’re dealing with.
• Reach out for helpOne PH caregiver told us, “I feel like I have to be there, every moment, everywhere, 24/7.” If you’re holding on to similar superhuman standards, do yourself a big favour and let go of them now. Not even the most loving and supportive caregivers are with their loved ones all the time. You owe it to yourself and your entire family to schedule in “me time” to tend to your own needs. Assemble a core group of trusted friends and family members to be a part of your “PH team.” Assign your helpers clear and specific tasks like grocery shopping, transportation to medical appointments and cooking the occasional meal.
• Be patient It takes time to see the benefits of therapy, medication and lifestyle changes. Don’t give up after a few weeks just because you haven’t seen dramatic changes. Keep putting effort into your recovery and all your hard work will eventually start to pay off.

For most people, knowing how to respond to someone with a serious illness can be a very challenging. We don’t want to say the wrong thing. We don’t want to appear insensitive. We don’t yet know what is helpful and what isn’t. On top of all that, seeing a person we love dealing with pain and suffering often reflects back to us our own mortality and this can be very frightening. For many, this proves too difficult to handle and they simply become unavailable.

Yet part of being an effective caregiver is being open to many of the same emotional challenges your loved one will confront. This means a willingness to be present with the fears, anxieties and range of questions that will arise. No matter how loving and diligent you are, you will never be the “perfect” caregiver. You will make mistakes, and that’s ok. With caregiving there is a very steep learning curve and like any learning process it will take practice, patience and commitment to get through.

Here are some suggestions for communicating with a loved one who is depressed:

• Listen without judgment Most people underestimate the value of listening. Try to get a sense of what this experience is like for your loved one. Put aside the need to fix, advise, criticize or react. Most caregivers will wrestle with their desire to be in control. After all, it’s your attention to detail and willingness to help that makes you such a capable PH caregiver to begin with. But for someone who’s depressed to truly heal, “answers” often need to come from within, not from their family or friends. Rather than offering advice, make yourself emotionally available and allow your loved one the space to share.
• Accept the reality of this moment Acknowledge that this situation is what it is. You don’t have to condone your loved one’s feelings or give up hope that they’ll change in order to accept them in this moment. Meet your loved one where she is, not where she was yesterday or where you think she should be, and take every moment as it comes.
• Be reassuring Remember that someone suffering from depression might have a distorted perception of the world around them. By pointing out realistic options, honest observations that emphasize the positive aspects of situations, and the admirable qualities your loved one possesses, you can play a part in countering the hopeless and negative thoughts your loved one may be feeling.
• Practice the art of gentle encouragement If you get an invitation for a party and your loved one declines, don’t force the issue. Feeling pressured to socialize can make someone who’s depressed withdraw further. But don’t give up on your loved one either. Give it time and ask again.
• Be true to yourself Don’t ignore your own feelings or pretend that you’re not affected by the changes brought on by PH, depression or other household stresses. In the long run, trying to disguise your true feelings can take a toll on both you and your relationship. Acknowledge how you’re feeling, first to yourself and, if you’d like, to your loved one. When you’re talking about your feelings, try to speak from an “I” perspective. For example, rather than saying, “You’re not listening to me,” try, “I feel unheard.” This acknowledges to your loved one that you’re taking responsibility for your emotions and will make it easier for them to listen to what you’re saying without feeling humiliated or attacked.

Even with these tips in your back pocket, many caregivers find it challenging to provide the support they want to provide. One caregiver told us, “Some days it feels like everything I say is wrong, everything sends her further down her dark spiral. I don’t know what to do for her when she gets like that.” Keep in mind that there’s no magical pep talk or solution that will make a depressed person perk up. The biggest gift you can offer your loved one is a stable environment and your caring presence.

Pulmonary hypertension can affect everyone in the family, including healthy children. When someone in the family is sick, many parents find it difficult to make time for everything and everyone that needs attention. This can leave children feeling stressed, angry or anxious, and parents feeling drained, guilty, and unsure about how to make things better. While there’s no magic formula for resolving healthy children’s PH-related stress, recognizing their feelings and experiences is an important first step in providing them with the support they need.

Every child responds differently to the stresses and lifestyle changes imposed on a family by PH. Some children will vocalize stress directly. Parents report that some healthy children worry aloud about their sick sibling or parent. Some kids express guilt or distress that they can run and play when the PH patient can’t. Others display visible anger or resentment that they need to go to school or help with chores when the PH patient doesn’t. Some parents also report that their children pick up on the stress of other family members in the house and ask questions that reflect worries related to “adult” problems like marital arguments, hospitalizations and finances. They may even ask about difficult topics like death.

Depending on personality, age, developmental stage, and a variety of other factors, some children may not be willing or able to vocalize their stress. One mother said that her healthy daughter refused to talk about PH and left the room whenever family conversation turned to doctors’ visits. More commonly, children may not articulate specific questions or concerns about PH, illness or the concept of death, even when invited to share their feelings. In such cases, children may present stress through behaviours or physical symptoms. Some children may act younger than their age, falling into old habits they had previously outgrown, such as sleeping with the light on or clinging to you in public. Siblings may compete with one another, vying for a parent’s attention. Children who feel everyone is focusing on the PH patient may act out or sulk. The external symptoms of stress can include bad behaviour, low moods, stomach-aches, headaches or trouble sleeping.

Even children who don’t show signs of stress are likely thinking about PH and how it’s affecting your family. Sometimes the product of these reflections are remarkably positive. A child growing up in a PH household is likely to absorb a lot about the ways in which family members work together and support one another. Many parents in the PH community are proud to report that their healthy children voluntarily take on responsibilities and roles that allow them to advocate for the PH patient and care for parents and siblings. One sibling shared, “I hope someday to find a cure for PH when I am a doctor and never see anyone go through what my family and PH friends do.” While PH can cause stress for parents and children alike, in the context of a loving and attentive family, children have the capacity to learn, grow and flourish.

No matter how busy and overwhelmed you feel, there are things you can do to help your healthy children cope with PH in the family. These are not to-do items to check off a list once and for all, but rather activities to help guide your family’s on-going journey of coping and acceptance. For a non-patient parent in a PH household, there are lots of things you may struggle to accept, from your loved one’s diagnosis to the way PH affects your family to your limitations as a parent. Acknowledge to yourself now that you’ll never be the “perfect” mother or father. Between caring for a PH patient, paying the bills, getting food on the table, and your own stress, you have a lot on your plate. You can’t be everywhere at once, and you can’t be everything to everyone.

While there are a limited number of hours in the day, there’s no limit to the amount of love you can share with your children. When your intention is to create an inclusive, healthy and supportive home for your family, mistakes and false starts are ok. In fact, they’re par for the course. When they happen, remind yourself of your love and intention and begin again. Focus on the aspects of parenting you can control, rather than the many chaotic life factors that you can’t predict or influence. Here are a few goals to work towards to provide your healthy kids with the structure and support they need:

Keep healthy children healthy

Tell them you love them

Be attentive on your terms

Keep a routine

Set rules and enforce them

Encourage open conversation about PH and treatment

Make time for them

Anticipate potentially stressful situations

Be prepared for difficult conversations

Talk about stress

Turn to a counsellor

Remember that before PH, your loved one was probably used to giving as well as receiving support. The loss of this role can be difficult for patients — and sometimes unnecessary. One patient told us, “Sometimes I think my wife believes PH has affected my brain … actually, my brain is the healthiest part of me now, and I really want to be asked to use it.” While you may not be comfortable talking to your loved one about the frustrations you may feel about your role as a caregiver, don’t forget that they still want to be there for you in any capacity they are able to.

Additionally, it’s important that your loved one be prepared if the unexpected happens. “I have created a complete step-by-step direction pamphlet that I leave in my husband’s medication supply kit. He also has a card in his wallet that lists all his medications in case he is ever alone and has an emergency and needs help from the EMTs,” Diane told us. “I can give him the gift of caregiving, but I also want him to be able to take care of himself.”

“I’ve been seeing a therapist since my partner got diagnosed, to help me cope with our ‘new normal,’” says Cynthia. “I feel that talking to a therapist is a way of standing up for myself. It helps me to cope with my partner’s expectations and to work on also taking care of myself.”

Sometimes, just having someone acknowledge your efforts as a caregiver can help. “Personally, I love it when someone comes in the house and just asks me how I am,” says Diane. Nancy agrees, “It means the world to me to have someone actually ask me ‘how are you doing?’ To know that someone is concerned for you is huge.” You can reinforce this by thanking the people who take the time to ask how you are. If you’re feeling forgotten, call a friend or family member who you’re close to and let them know that you need someone to lean on or talk to for half an hour from time to time. Don’t be ashamed to ask for support.

“Rethink your family budget in terms of how much you ‘spend’ when doing chores. If your time is more valuable (per hour) than what you’d pay someone to clean your house, grocery shop, do yard work or other chores, try to find room in your monthly budget to pay them and free up your time for things you cannot pay someone else to do,” suggested a male caregiver who participated in PHA SA’s Family and Friends survey.

Joe, another male caregiver, adds, “We now pay two ladies who clean our house, but they are the only people who I pay. It’s also good therapy for my wife to talk to them, and they have become another support system.”

Look for others who can help you with medical tasks such as mixing medications. “I would like to know if there could be training for in-home care. It’s very scary to know that I am the only one who knows how to handle my mom’s condition,” says Nancy. Many specialty pharmacies will send a nurse out to train caregivers at home; if you have friends or family willing to help you with your loved one’s medication, see if you can schedule a “training date” for them. Similarly, if you have a local support group, see if a specialty PHA SArmacy nurse can run a training session for the group and bring your “caregiver volunteers” to the session so they can learn with you.

Reach out if you don’t have local support. Cynthia told us, “Initially, the isolation, I think, was the hardest thing. Then my partner and I found a support group in the Boston area.” Cynthia advises, “Keep your social connections open; just because someone in your life has a chronic illness doesn’t mean you have to close off your social life.”

“My out-of-town family sends me gift cards to restaurants to help me with meals,” says Joe. “Other members of my family bought Dream Dinners services for me. You order your meals and they send them to you with an instruction card. When the meals arrived, my family got together like a party and put the meals together.”

The benefits of caregiving support are as many and varied as the types of support. Getting help with something as basic as household chores can contribute to your emotional well-being and sense of communal support. “I’m lucky because my family volunteered; their help freed up my time to do other things,” shares Joe. “It gave me time to go fishing and take time for myself. Because of them, I never feel alone or like I’m stuck.”