Support.

Knowledge.

Hope.

Welcome to the

PHA SA South Africa Website

This website is for anyone who suffers from Pulmonary Hypertension (PH) as well as their friends and family.

Here you will find information about the condition, as well about the PHA South Africa organisation.

Caregivers

Intro

If someone you care about has been diagnosed with pulmonary hypertension, you may find yourself taking on unfamiliar responsibilities. Whether you’re a close family member or a friend, neighbour or teacher, you have the opportunity to provide much needed friendship and support. Chances are you have questions about PH and what you can do to help your loved one live a happy and full life.

Here you’ll find information and resources to help you care for your loved one without neglecting your own needs.

  • FAQs for Family and Friends

    What you need to know if your loved one's been diagnosed with PH.

  • Caring for Your Loved One

    Get practical advice about providing medical and emotional support to a PH patient.

  • Coping as a Caregiver

    The most effective and supportive caregivers are those who pay attention to their own needs to prevent caregiver burnout. Find ways to tend to your emotional health and family relationships.

Frequently Asked Questions for

Family and Friends of PH Patients

Take a deep breath

PHA is made up of a community of patients, caregivers and medical professionals who can provide information and support as you begin your journey. We know more today about the disease than even five years ago; a number of treatment options are available to reduce symptoms, and clinical research is currently being conducted to improve treatments and find a cure.

Educate yourself

There is a great deal of information available about PH. To avoid misinformation, start your research with trusted sources: your PH specialist and PHA’s website. Learn about available therapies, how they work, and possible side effects. Ask your loved one’s PH specialist about treatment goals and how they will be measured. Read up on your insurance plan to determine if you have prescription coverage, if your loved one needs referrals and prior authorizations and if you require a co-pay for physician visits and testing.

Talk to your loved one about how to best provide support on this journey

Don’t assert yourself too aggressively or try to take control. Instead ask, “How can I help?” Don’t take the lead on activities your loved one can still do independently, but be sensitive to limitations as they become apparent. PH patients have good days and bad days. Be prepared to adapt your level of involvement to the ebb and flow of your loved one’s energy levels.

Be your loved one’s advocate

As the people closest to PH patients, family and friends can see how patients are affected by their illness on a daily basis. If possible, attend doctors’ visits to help record and retain medical information and discuss symptoms the patient hasn’t noticed. PH patients may not always look ill, so it is important that caregivers understand their limitations and make others aware of them as well. Speak up to help relatives and friends recognize the challenges your loved one faces.

Encourage compliance so your PH patient takes medications as prescribed

Contact your loved one’s medical team if you have questions about treatment or if he or she experiences side effects. Family members can also help patients track vital signs between appointments by encouraging their loved ones to weigh themselves and measure blood pressure, heart rate and temperature every day.

  • How do I contact my loved one’s PH doctors?
  • What symptoms should I monitor and who should I contact if they change?
  • What constitutes an emergency and who should I contact in the event of one?
  • What medications are you prescribing and why?
  • What testing will you routinely perform and why?
  • How often will we be seeing you? Who do I contact to make an appointment?
  • Chest pain. Is it new, more frequent, or lasting longer? Has the sensation changed (i.e. sharp now vs. dull before)? Is it accompanied by nausea or does it travel from one body part to another?
  • Fainting
  • Bleeding
  • Not eating or decrease in appetite
  • Shortness of breath when doing activities he or she used to be able to do
  • Increasing fatigue
  • Persistent vomiting or diarrhoea
  • Fever of 99 degrees or higher or chills

Many individuals who suffer from chronic disease will also suffer from periods of depression. Talk with the patient’s physician if you feel the depression is escalating or negatively impacting your loved one’s ability to cope or manage daily activities. Encourage your loved one to participate in individual therapy or to join a PH support group. When possible, take trips or leave the house to do activities you both enjoy. Be attentive to your own mental wellbeing as well. When your loved one has less energy or you’re feeling overwhelmed, journaling can provide a safe outlet for you and your loved one to express and process your feelings.

Consider joining a support group or visiting a therapist to learn new ways to manage stress. Many caregivers find it helpful to schedule recurring, non-negotiable time to do the things they find relaxing. You might go for a walk, participate in an exercise class early in the morning or in the evening, attend activities at your place of worship or meditate. Getting away from situations that cause stress, even for short periods of time, can help you feel refreshed and ready to meet your responsibilities.

Responses provided by Darci Albrecht, MSW, Vera Moulton Wall Center at Stanford University, Palo Alto, Calif., and Natalie Kitterman, BSN, RN, CCRP, Intermountain Medical Center, Salt Lake City, Utah.

Caring for Your Loved One

Give the best care possible

“When I get home from a rough day at work and [my husband] asks me to do something I had not planned on, it is not always easy to say okay and do it. But if things were reversed and I was the one who was sick, I would hope he would be there for me.”
- Peggy, pulmonary hypertension caregiver

As a caregiver, you are an important part of your loved one's pulmonary hypertension experience. With planning, perspective and the knowledge that you don’t have to do everything alone, you can become a well-informed advocate for your loved one’s health and an everyday source of strength and courage for the PH patient in your life.

Educate Yourself

Get Organized

Stay Calm

Respect Your Loved One

Coping as

A Caregiver

As a caregiver for someone with pulmonary hypertension, you devote a lot of your time to someone else. When your day-to-day concerns are tied to someone else’s comfort and care, it’s possible to put your own physical and mental health on the back burner.

While you may feel as if you don’t have time to tend to your own needs, the reality is that the most effective and supportive caregivers are those who also take time to take care of themselves. The resources in this section explore how caring for someone with PH can affect you: your emotional health, your relationships and your outlook.

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.”

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.

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.

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, 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.”

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.

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.

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.

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.

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?’”

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.

“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.”

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 favourite comic strip, or sign up to receive a daily joke via email.

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.

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).

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.

Some things that may seem as minor as asking your neighbours 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.

“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.

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.

Recognizing Depression in Yourself

or Your Loved One

Pulmonary hypertension patients and caregivers face a host of daily challenges that put them at increased risk of depression, from the financial strain of medical bills to the isolation and loneliness of living with a rare illness. Recent studies indicate that while the majority of people affected by PH suffer from periods of depression, with treatment, most of these patients and caregivers go on to overcome their symptoms and live full and meaningful lives.

In families living with PH, it’s not uncommon for more than one family member to be depressed. The emotional effects of chronic illness can make people act differently than they did before diagnosis, and these changes inevitably affect other members of the household. If you have noticed changes in your loved one or yourself, you are not alone. One husband to a PH patient told us, “I feel overwhelmed by my wife's condition and her actions toward me and others.” Another said, “My sister’s diagnosis came with a lot of questions and definitely shock, and it was kind of crazy watching my family go through all the emotions.”

As the caregiver of a PH patient, it’s important to become familiar with the warning signs of depression and learn about the resources available if anyone in your family needs help. Depression is a serious but treatable illness, and research suggests that the earlier depression is treated, the greater the likelihood of a positive outcome.

Depression

What to Expect and Moving Forward

Identifying Depression

Depression in Your Loved One

Depression in Caregivers

Treating Depression

Lifestyle Changes

Supporting a Loved One with Depression

Caring for Your Relationship

with Your Partner

After killing ourselves for so long and finally getting to the ‘us’ time, now she has PH. We were looking forward to spending some time and money on us for a change.”

“My hubby said that he felt like it was his job to ‘FIX’ everything for me, and he gets so upset with himself because he cannot fix my PH. That really opened my eyes to why he sometimes acts the way he does or says the things he does.”

“It is hard for a caregiver to watch what PH does to their loved one. I think for some (like me), there is safety in denial.”

What to Expect

Adapting and Moving Forward

Helping Healthy Children

and Siblings Cope

We have been through a lot and I try to help my parents but they say I need to focus on being my own age and doing what kids my own age do.

I have to share a room with my sister … she has on her oxygen machine and cries many times at night, and that makes it hard.” –Sibling of a PH patient

“I worry about our kids. There’s so much weight I feel to keep them from being affected by my wife’s PH.” –PH caregiver

Helping Healthy Children and Siblings Cope

What to Expect and Moving Forward

What to Expect

Adapting and Moving Forward

Medically reviewed by Debra Hudock, RN, MSN, CNS, of Akron General Medical Center.

Jim Wilson

Coping as a Caregiver

a Husband's Perspective

While serving as co-facilitator for the Male Caregivers sessions at PHA's International Conference in Houston, I was asked about the "tactics" I used as a caregiver to cope with certain situations. It caused me to think about the 11-year journey I've been on with my wife Debbie. My path to being on the facilitator side of the session table has been "twisty" at best and is still evolving. This caregiver role is a stressful job.

Coping with My Wife's Diagnosis

The Acceptance Phase

Seeking Out Support

By Jim Wilson, PH caregiver and PH Email Mentor.

Caregiver

Tips

  1. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
  2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
  3. Grieve for your losses, and then allow yourself to dream new dreams.
  4. Seek support from other caregivers. There is great strength in knowing you are not alone.
  5. When people offer to help, accept the offer and suggest specific things that they can do.

We All Need

Support Sometimes

As a caregiver, it can be easy to fall into the trap of feeling like you need to do it all. After all, your loved one is looking to you to help them manage a chronic disease and, depending on the severity of your loved one’s health challenges, their care may involve significant time and activity. Caregivers may become completely focused on being caregivers, and rarely or never on being caregetters.

Finding and accepting support can be difficult. You may feel uncomfortable trusting another person to be responsible for your loved one’s care, feel obligated or expected to be available 24/7, or simply be used to being the go-to person. But help can take some of the weight off your shoulders, give you some time to refresh your mental, emotional and physical reserves, and ultimately enhance your relationships with both yourself and your loved one.

Caregivers Share

Tips for Caregetting

We spoke to caregivers in a variety of situations to hear their thoughts on finding caregiving support. Here is what we learned:

Accept help — from your loved one

Make a space for yourself

The small stuff counts

Prioritize

If needed, provide training

Long-distance support counts, too

Special thanks to each caregiver who contributed to this story. Thanks as well to Allyson Rupp, LCSW, of the Vera Moulton Wall Centre for Pulmonary Vascular Disease at Stanford Hospital and Clinics, for input on support opportunities.

Transplant and Pulmonary Hypertension

Information for Caregivers

Standing by a loved one while they list, wait, receive and recover from a transplant is a long, emotionally wearing process. Like everything else in life, this process will have its ups and downs. While it is invaluable to the transplant candidate to have a friend, loved one, or family member by his or her side through this process, these caregivers must make sure that they also take care of themselves.

The transplant process does not only impact the patient; the transplant patient's entire family is impacted by the reality of their illness, the transplant, and the changes that come after transplant. Financial pressures from the continued cost of transplant medications, changes in family roles, and other sources of stress can sometimes overwhelm families and marriages. As a caregiver, the key to maintaining emotional stability will be stress management. Stress management tips are discussed below.

Although the transplant patient will have a variety of physical and emotional needs, you as the caregiver must ensure that your needs are being met. Throughout the process, you should maintain your friends and activities and make sure that you have time to relax and step away from the stresses that the transplant process brings with it.

To some caregivers, this may seem impossible because of the vast amount of time that caring for the transplant patient requires. The key will be to enlist support. It is unrealistic to think that one caregiver can provide for all of the needs of a transplant patient. Rather, a support network should be formed of friends, family, social workers, physicians, mental health professionals and/or spiritual and religious leaders. In this way, the transplant patient can receive all of the support he or she needs without too much stress being put on a single individual.

Tips for

Coping with Stress

  • Maintain as much of your normal routine as possible. Be sure to make time for friends, family and activities you enjoy.
  • Try to either act on or accept changes and challenges. If it is something you can change, act on it. If it is something you cannot change, try to work towards accepting it.
  • Learn a relaxation technique such a deep breathing, meditation, prayer, visualization, guided relaxation or progressive muscle relaxation.
  • Set priorities, focus on achieving the things that are truly important and either delegate or put off tasks of lesser importance.
  • Delegate responsibility. Though you may be the primary caregiver, enlist a support network of individuals that can address all of the various needs of the transplant patient. Remember, it's OK to ask for help.
  • Share your thoughts and feelings with a friend, family member, spiritual/religious adviser or mental health professional.
  • Exercise regularly. It's a great way to relieve stress and re-energize your mind and body.
  • Keep a good sleep schedule and maintain healthy nutritional habits. Stress makes your body much more susceptible to disease: these good habits will help fortify you.

Watch Out for

Signs of Stress

  • Denial
  • Withdrawal
  • Anxiety
  • Depression
  • Exhaustion
  • Sleeplessness
  • Irritability
  • Inability to concentrate
  • Unexplained anger

If you experience these or other signs of stress, try to take a break or talk with someone about your feelings.

Hand Holding

Vital to Both Patients and Caregivers

Nancy Leaman

Before I ever knew what it meant to be a caregiver, before I ever heard of an illness called pulmonary hypertension, I read a Reader's Digest article about a hospital volunteer position called hand holding. A hand holder sits with a patient, before or during surgical procedures, offering the physical comfort of his or her presence through the simple but profoundly human act of holding hands. I remember thinking, "I'd like to do this someday." And now I do.

As full-time caregiver to my mom, who was officially diagnosed with PH in December of 2008 after a year of clear symptoms and baffled doctors, I offer her the comfort of knowing that my hand - and by extension my love and care - is always within her reach. Sometimes it's all we caregivers can do, but often it is enough. My mom's recent hospitalization at Yale-New Haven Hospital showed me how important it is for caregivers, and not just patients, to have a hand to hold onto.

My mom had been relatively stable, with the usual PH ups and downs, for three years after her diagnosis. But this past fall, a routine blood test showed that she had severe iron deficiency anaemia, which caused a rapid spiral into pulmonary edema and a heart arrhythmia called atrial flutter. I took my mom to Yale, where doctors were confident I had gotten her there in time to prevent a PH disaster and she would be just fine. But that's not quite how it worked out.

On her second night in the hospital, my cousin Shannon and her daughter Blaze visited and, afterward, offered me a ride home to shower and return; I never leave my mom alone overnight when she is hospitalized. At home while I was towelling off, Shannon burst into the bathroom holding the telephone out to me, wide-eyed: "It's your mom's nurse." Mike, whose sweet, easy-going, and innocently flirty personality had put my mom's mind at ease, did the same for me as he explained that after I'd left, my mom had had some anxiety and he'd sat with her. Suddenly, her oxygen saturation dipped dangerously low and he was unable to bring it up, so he had transferred her to the ICU. I thanked him for calling, told him I was glad he'd been there with her, and then collapsed crying in my cousin's arms. I had no idea what awaited me when I returned to the hospital.

My mom was in respiratory distress, a term I'd heard but never really understood until that awful night. I walked into the darkness of her new room to find her alone, unconscious, and hooked up to what looked like a ventilator. I later discovered it was a high-flow oxygen and air device. I watched, sickened and heartbroken, as each effort to take a breath bent my beautiful mother's body in two. Her shoulders hunched and her stomach heaved with each gasping intake.

On my mom's floor that first night was Dr. Dieffenbach. Young and affable, he chuckled when I told him I'd never remember his name in my state of mind. But I do, and I also remember his kindness and patience as he explained in depth my mom's condition, the treatment plan and the possible outcomes. And, in an even more compassionate gesture, Dr. Dieffenbach peeked his head in the room during my mom's second night in the ICU and said, "I'm not on this floor tonight, but if you need to talk about anything, just ask for me and I'll come." The right bedside manner in a medical professional is a kind of hand holding too.

Hand holding need not take place in person, either. I used Facebook to keep family and friends updated about my mom's condition, and my online friends' messages brought me comfort and happy tears. Often on Facebook, you become connected with people you barely know. Such was the case with Matt, a friend of my cousin's, who had seen my Facebook posts about my mom, gotten my cell phone number from my profile, and texted me: "Hi Nancy. This is Jeff's friend, Matt. How are you doing?" I was in agony, and I told him so. "I'm here for you," he said and meant it. During my mom's twoplus- week hospital stay, every time I sent a text to Matt saying: "I'm scared," he replied: "I'm here." His hand was a welcome surprise that lifted me, supported me and has led to friendship.

After the awful night when I'd gone home and received the phone call that my mom had been downgraded to critical condition, I was emotionally unable to leave the hospital. I stayed for two days, in the same clothes, by her bedside. On her second night in the ICU, she was agitated and unable to get comfortable. I spent the night on my knees by the bed, holding her head on my shoulder - the only position in which she could sleep. In the morning, a new doctor came during rounds. "I'm Dr. Hajizadeh," she said warmly. "I'll be taking care of your mom." "I'm sorry," I said, feeling uneasy, "but I'm going to need Dr. Trow." Dr. Trow is the PH specialist who diagnosed and has cared for my mom over the past four years, and I wanted his familiar face and caring presence. Luckily, Dr. Hajizadeh understood my anxiety and didn't take offense. She explained her place on Dr. Trow's team and his continuing involvement in all things related to my mom's care. Dr. Hajizadeh proved to be brilliant, and I grew to admire and even idolize her as she took control of my mom's care and took me under her wing. Sensing my need to understand and participate in my mother's treatment, she encouraged me to conference with the team of critical care doctors, to view and discuss my mom's computerized test results, and to recognize my importance as a member of my mom's healthcare team.

Like Dr. Hajizadeh, the rest of the Yale staff also took notice of my fragile emotional state and intervened. My mom's next RN was the amazing Michelle, whose no-nonsense but congenial personality told me she would hold my hand but also give me the push I needed to think of my own health. "You look like you're going to drop!" she exclaimed. "You need to go home and sleep in your own bed, not in one of these hospital chairs. You have to get your rest because when your mother gets better, she is going to need you even more. You need to trust us, trust that we know what we're doing and go take care of yourself." It was the hardest thing anyone had yet asked me to do, because as caregivers, we often forget one crucial thing: we need to hold our own hands too.

I balked at Michelle's suggestion, and my mom's respiratory therapist, Peggy, asked me to take a walk with her; she had something to share with me: Yale's Smilow Cancer Center's Healing Garden, a magical rooftop maze of trees and plants, oversized rocks, a babbling brook, benches, a gazebo and a wind chime. While there, she shared with me her story of caregiving for her own mom and then left me to be alone and quiet for a time. In that garden, I allowed myself the comfort I always give to others without remembering to reserve a bit for myself.

Reminding me to keep this newfound balance was the Yale ICU social worker, Donna Palmer, who offered tremendous comfort in two lengthy talk therapy sessions. I learned that it's okay to give myself a little space, to acknowledge I can't do it all, to ask for help. And I started immediately taking care of myself through a request for help that allowed me find the inner peace I needed to be able to leave my mom and go home and sleep. I created a buffer between myself and any possibility of another devastating phone call from the hospital. I did so by turning to my rock, my Uncle Mike: "Can I ask you to put something on your shoulders for me? Will you be the emergency contact for Yale instead of me? Because I can't bear the thought of being alone and getting a call saying my mom is worse or gone." He agreed, and we made an arrangement that he would text me with any good or neutral news, but that if the news was bad, he would deliver it in person, so I'd have his hand to hold.

Thankfully, my Uncle Mike never had to come to my door, and as I write this, my mom is home with me, still recovering and working on getting her strength back, but closer to her old self every day. My gratitude to the Yale medical team that saved her life, and my sanity, is boundless. The doctors, nurses and staff who reached out to me left me with a newfound awareness of my own strength, resourcefulness and resilience. Because my Yale hand holders and my friends and family enveloped me in their caring, I was able to hold on to my mom's hand without letting go even in the darkest moments and lead us both back on to the path toward light.

By Nancy Leaman
Caregiver to her mother Linda