Meeting in a Minute: Caregivers by Pulmonary Hypertension Association

Meeting in a Minute

PHAâ&#x20AC;&#x2122;s Growing Meeting Topic Guide

Partners on the PH Journey:

Recognizing the Labor and Love of PH Caregivers

●●● Table of Contents Introduction ....................................................................................... 5 Why Focus on Caregiving? ...................................................................................7 How Can I Integrate This into Other Meetings? ...................................................8 Social vs. Educational ..........................................................................................9

Activities and Discussion Questions ................................................... 11 Let’s Break the Ice! ............................................................................................12 Explore Caregiving with Fun Activities ...............................................................13 Lead a Caregiving Discussion..............................................................................14 Honor Your Caregiver! .......................................................................................16

Speaker Suggestions ......................................................................... 19 Invite an Outside Speaker ..................................................................................20 Leader as Speaker ..............................................................................................21

Sample Agendas ............................................................................... 23 Additional Resources ........................................................................ 27

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“When you get diagnosed with PH, it's not just YOU getting diagnosed; your family is being diagnosed as well.” –Mark Arellano Support Group Leader Albuquerque, N.M.

●●● Introduction ●●●

Take a look around at your next support group meeting. Who's there? You may see a few people wearing oxygen, men and women of different ages and a medical professional setting up the projector for a presentation. But there's another group of people at your meeting too, people who pull the oxygen, park the car and come along to support a PH patient during the meeting: Caregivers.

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●●● “She doesn’t want PAH to define her life, but it does redefine my role as her husband.” –Husband of a PH patient

Why Focus on Caregiving? Leader’s Words

Caregivers play an integral role in supporting a PH patient and advocating for their needs. The caregiver role may include – but is not limited to – accompanying a loved one to appointments, mixing medication, making endless calls to the insurance provider and managing household chores. At the same time, many caregivers are also the family's primary breadwinner. Clearly, caregivers are vital to patient’s health and wellbeing. Those diagnosed with PH aren't the only ones affected; their family and close friends are also impacted by the disease and need support. As a support group leader, you are in the unique position of being able to provide support and education to both!

“I’m not in assisted living, but I live an assisted life. If it wasn’t for my caregiver, my life wouldn’t be possible.” –Debra Watkins, Support Group Leader Portland, Ore.

being here for me. Thank you for this huge role that you've taken on.” By having a meeting that recognizes and celebrates caregivers, you give your members the opportunity to show just how much this support means to them.

PHA Tip:

Adding caregiving-related themes to your meetings makes your group more inclusive and reinforces that caregivers are part of the group too. Several leaders reported to us that since having a caregiving meeting, more of the patients' caregivers are now attending. Another leader told us that that when he throws his Caregiver Celebration meeting, there are caregivers who attend even after their loved one has lost the battle with PH. These people are part of the large support network that keeps the other caregivers and patients in their group healthy.

Patient care is dependent on the health of the caregiverpatient pair.

When you hold a caregiving-themed meeting you give your members the chance to better understand one another. Whether listening to a speaker or sharing struggles in a discussion circle, PH patients and their caregivers will come to a stronger appreciation of what goes into each of their roles.

Anybody can become a caregiver at some point in their lives. Even PH patients may find themselves in a position where someone close to them faces health challenges. Your spouse or your parents may be the ones who require a lot of medical attention, and it’s important to be ready and prepared with the skills to care for them. Use your meeting to teach everyone how to cope and support their loved ones and everyone will benefit!

Let your patients thank their caregivers publicly. While we may thank our loved ones for vacuuming or driving us where we need to go, it's not often that we get the chance to say “Thank you for all that you do. Thank you for

How Can I Integrate This into Other Meetings? You may have already planned all your meetings for the coming year and there may not be a day you can dedicate to only talk about caregiving. Perhaps you only have a small group of caregivers who regularly attend your meeting. Don't worry, we have some suggestions for adding caregiving themes to any meeting! most heroic actions. Sometimes you might be thankful that your caregiver held your hand in the ER. Other times you're grateful that she cooked dinner and made the most delicious lasagna. If your group likes this activity, think about including it in meetings regularly.

Caregiver Breakouts: Carve out a time in your meetings (it doesn't have to be long, maybe just 30 minutes) for patients and caregivers to break into separate discussion circles. Do what you can to give each group its own room for this discussion. This gives caregivers a safe space to express their feelings without potentially hurting a loved one's feelings. Having the time to speak with others with similar challenges will help build caregivers' support networks.

Add Perspective: Have your speakers address some topics from both patient and caregiver perspectives. Some good topics for this are coping, medication management tips, nutrition and exercise. These can all be approached from dual perspectives to support and educate the patient-caregiver team. A healthy and happy caregiver is better able to support a loved one, and good education is the first step towards health for your whole group!

Shout-Outs: At the beginning or end of your meeting you can save 20 minutes for your group members to do shoutouts. Patients and caregivers can choose to share something their loved one did since the last meeting that they really appreciated. Shout-outs don't need to be limited to only the

Social vs. Educational Depending on your goals for your group there are different ways you can structure your support group meeting. Choose the best type for your group based on your preferred meeting style or on what your members want to discuss.

Social: By taking a more social approach you can make caregivers feel more included in the group and give those who support a PH patient the chance to communicate with others in a similar role. Two ways you can make your meeting social in nature are by having discussions focused on caregiver issues or having a celebratory meeting to show gratitude for caregivers.

Educational: Some groups prefer to feature at their meetings. If this is your group’s style, choose presentation topics that touch on caregiving, are applicable to both patients and caregivers or encourage overall health and wellbeing for everyone.

Support Groups in Action: The Puyallup, Wash., Support Group is a perfect example of addressing caregiving from both of these angles. Since 2007, they have dedicated two meetings a year to focus on caregiving. “Caring for the Caregiver” is educational and gives caregivers the tools they need to keep both themselves and their families healthy, and “Celebrating our Caregivers” gives the group a chance to say thank you to those who support them. You may be wondering how your group will respond to adding this new caregiver perspective to your meetings at first, but you can gauge everyone’s interest after the first try. For example, Charlotte McCabe, the leader of the Puyallup Support Group, never expected these meetings to take off quite the way they did. Now the group also has regular discussions in separate groups of patients and caregivers because, Charlotte says, “both parties need a place to vent.”

“A caregiving-centered meeting brought to light to PH patients that although we appreciate the care, we don’t always realize the needs of the caregiver.” –Pat Murphy PH Support Group Leader Brevard County, Fla.

●●● Activities and Discussion Questions ●●● 11

Let’s Break the Ice! Need a way to start off your event for caregivers? Here are some classic icebreakers that we’ve modified just for our caregivers.

How much does your group know about your caregivers? Play the icebreaker game Two Truths and A Lie. Here’s the twist: have your group’s caregivers brainstorm for several minutes two random true facts about themselves, and one lie. For example: “I have two brothers, I’ve never had a cavity and I love to garden.” Next, have each caregiver share with the group and have the patients in the group guess which one is the lie! Large Group Variation: To give all caregivers a chance to participate, a variation would be to play Little Known Fact. Give a minute for every caregiver to write down one little known fact about themselves on a piece of paper. Collect their papers in a hat, choose one paper at a time and share that little known fact to the group. Have the group try to guess which caregiver wrote that little known fact.

Leader’s Words “People are shy about getting personal, but we should be comfortable and happy to HONOR our caregivers in a significant way.” –Heather Kirkland Support Group Leader Treasure Valley, Idaho

PHA Tip: If your group members are shy and not ready to open up about a topic an icebreaker can get them laughing and ready to talk!

Want both patients and caregivers to break the ice? Play the icebreaker Take What You Need. All it requires is for you to bring one roll of toilet paper. With minimum instruction, tell the group to simply “take what you need” of toilet paper. After the toilet paper roll has been shared among the group, tell your group that each sheet of paper they have taken represents an additional fact about themselves to share with the group.

Want to set a tone of gratitude at your event? Play

the icebreaker Weave a Web. All this icebreaker requires is one ball of yarn. The caregiver twist is to have each person pass the ball of yarn to another member in the circle (usually their caregiver or patient or another friend in the group) and say, “I appreciate you for…” By the time the yarn has reached every person in the group, everyone will notice that it has created a web in the middle of the circle. You can conclude this icebreaker by pointing out that each member of your group is connected to the other and is there to support one another.

Explore Caregiving with Fun Activities Sometimes doing something easy and interactive is the best way to get a dialogue started. Think of using one of these activities to help attendees open up about caregiving.

How does your group define the role of a caregiver? At the beginning of your meeting you can ascertain your group’s understanding with a “word web.” We’ve included an explanation and example of a word web on page 25 of this guide. Write on a board or flip chart. Put the word “caregiver” in the center of the page, and begin asking your group what characteristics define caregivers. Depending on your group’s answers, your activity can open up a discussion on various aspects of caregiving, such as the needs of a caregiver.

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity.”

Do your caregivers have difficulty making time for themselves? A great activity to do at the end of your meeting is having the caregivers write a contract. The contract would have them commit to either quiet time for themselves or time to devote to a hobby. Whether it’s spending 10 minutes of peaceful time every morning or promising to go for a walk every afternoon, the goal is to have your caregivers promise to care for themselves. In the weeks following this meeting, have patients, other caregivers and leaders follow up and keep them accountable!

Want to inspire your group to reflect on the caregiving experience? You or other group members can share some quotes or personal words on themes such as what caregiving means to you or what caregivers do for you emotionally. Use a resource such as Comfort and Be Comforted: Reflections for Caregivers, a book suggested by one support group leader, or do a web search on quotes about gratitude or compassion using a site like www.quotegarden.com. This is a great activity to do if you are transitioning from eating a meal to another part of your meeting.

Lead a Caregiving Discussion If you’ve already done an icebreaker or activity and you’re ready to go deeper into the topic, there’s still more you can do! Have a discussion focused on different aspects of the caregiving experience to add to your meeting. Facilitating any discussion in a support group isn’t easy and you may be nervous about having a discussion on caregiving for the first time. Have no fear! We have some tips and suggestions on how to facilitate a successful discussion for your caregiving-themed meeting.

But what do you talk about? Every support group is unique and made up of caregivers and patients with different experiences. Prior to the meeting, think about what you feel are common issues among your group’s caregivers. Here are a few discussion topic questions you could consider:     

On Self-Care: How do you, as the caregiver, care for yourselves? How do you relax? Juggling Act: How do you find a balance between your responsibilities as a caregiver and your other roles? How do you manage your time? Reciprocal Care: As a patient, how do you care for your caregiver? Conversely, as a caregiver, what do you need from the one you care for? Patient Care: As a patient, what are some areas in which you may not need help from your caregiver? What are things you definitely need your caregiver to do? Medical Needs: How can caregivers be more knowledgeable about patients’ medical needs?

One last thing to remember about discussions is that one question can begin the dialogue; but your group’s conversation can end up somewhere entirely different! Starting the discussion will draw out the needs of your group and bring to light what needs to be discussed.

PHA Tip: Read Body Language During your discussion, be conscious of your members’ gestures, postures and facial expressions. These visual cues can be an important indicator of how your discussion is going. It can tell you who is actively engaged and who is uncomfortable. When a member looks like he or she is withdrawing, you can possibly use that visual cue to discreetly ask him or her to share. Sometimes, people can get lost in their thoughts or just need another person to ask them to share in order to feel comfortable.

Caregiving Discussion (cont.) Breakout Discussions: It might not come naturally to your group the first time, but consider having patients and caregivers meet in separate groups to have discussions. Whether this means sitting in separate parts of the same room or, ideally, having a room for each. On occasion it can be nice to have caregivers talk among themselves to share ideas for how they can cope and take care of themselves.

“Feelings of worth can flourish only in an atmosphere where individual differences are appreciated, mistakes are tolerated, communication is open, and rules are flexible – the kind of atmosphere that is found in a nurturing family.”

PHA Tip: Silence is Okay Regardless of how well your icebreaker, meal or activity went before the discussion, anticipate some silence when first starting a discussion. Possibly for the first time ever, caregivers are being asked to open up. Oftentimes caregivers are focused on the needs of others and may never have had the time to collect their thoughts on their experience. Be comfortable if there’s silence; if you wait it out for a few moments, people will eventually share.

Honor Your Caregiver! Whether you are a part of a newly formed group or a longstanding one, it is never too late to show your appreciation for your group’s caregivers! There are many different ways to express gratitude. Whether your group decides to throw an elaborate surprise party or a small celebration, here are some ideas to organize an unforgettable event.

Is this your first time ever having a meeting dedicated to your caregivers? Why not add an element of surprise to your meeting? Caregiver Appreciation Month is November and what better time to have a “holiday” party to divert caregivers’ suspicion and actually plan a caregivers’ celebration instead! Already planned a PH Awareness themed meeting in November? Have a “Valentine’s Day” party! This is an especially good option if many caregivers are the patients’ spouses. As a leader, you don’t have to do all the planning on your own. Make it a group effort. If you want to go above and beyond, begin calling your patient members in advance so they can help you brainstorm and come up with unique ways to show appreciation. Have each patient suggest a unique way to honor his or her caregiver, whether it’s by coming up with some thoughtful words or a small gift. If your group is really ambitious, members may even want to meet outside of your regularly scheduled meetings. Based on the time and talents of your group’s patients, decide who will organize decorations, create a token of appreciation, who is comfortable speaking at the event, what activities will take place, etc. With advance planning, your group can pull off a beautifully orchestrated event that will surprise caregivers and show them how much they mean to your entire group. If you have a group of patients who do not have additional time or energy to plan an event for caregivers, you can still create a unique, simple, and an equally touching event on your own in just a matter of weeks.

Leader’s Words “I’m not the best at understanding the caregivers in my group, but now I have a greater understanding of their experience.” –Lindsay Collins Support Group Leader Colorado Springs, Colo.

Have a Caregiver Appreciation Banquet Choose a location that fits the mood you’d like to create. If you are aiming to have a warm and intimate banquet, choose a private room in a cozy restaurant or a patient’s home. If you are looking to have a more light-hearted or larger event, consider a buffet-style restaurant, nearby park or decorate your usual meeting place.

Budget Your Meeting: You don’t need to spend a lot to show a lot appreciation! One way to bring costs down is to apply for the Support Group Central Fund to pay for the food for your celebration. If you are looking to get a group gift for the caregivers, you can coordinate with your local industry reps to donate a goodie bag or flowers. Need decorations? Go to the dollar store! Forgot to apply to Central Fund or can’t get a sponsor for food? Another option is to have a potluck! To make the caregivers appreciation banquet extra special, have a cake or other treats to make the meeting really celebratory! (Savings tip: Have a couple patients who love to bake get together the day before.) One way to make the Caregiver Appreciation Banquet special is by giving caregivers a token of appreciation. Stuck on gift ideas? Many caregivers have a difficult time doing something just for themselves. Get a gift that could treat them or allow them some relaxation! This can include: 

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PHA Tip:

Pamper your caregiver! A massage can be an Involving others in your group in the especially refreshing treat for people who planning and activities adds a spend a lot of time working. (Tip: Look out for wonderful personalized feel to the a coupon to score a great deal!) event. A great example would be to Gift basket. Whether it’s full of bath items or present flowers in a ceremonial tasty and healthy treats, get caregivers a fashion. Beginning with yourself, have basket of stuff they would never buy for each patient present a flower to his or themselves. (Idea: Your group can get a her caregiver and even share a few couple gift baskets together and have a door words of thanks. As always, you as the prize drawing, or a raffle as an activity during support group leader are in the your banquet! Ask local businesses to donate position to set the tone of your items.) meeting and make it a place of Tea or coffee. Check out a local café or online gratitude. supplier for gifts that include a mug or teapot, especially ones you can decorate or personalize. Time. If you can substitute for them, give “care vouchers” they can redeem for needed breaks. Are you creative? As a group or individually, use your skills to make something special.

Want to make your event feel fancier? Have everyone dress in their Sunday best! Dressing nicely for the event can create an even more dignified atmosphere for caregivers to be honored.

Be inclusive! Many patients are their own caregivers. Be sure to invite them as well and do something to celebrate and honor them. Invite families who have lost their loved one to PH and still participate in your group to come and be celebrated! Open up the invitation to all your support group members’ families too! Families play a large role in being a support to every patient and should be honored.

“My husband had surgery in November. He is at home now and trying to recuperate. My biggest challenge is how to go from the patient being cared for by your spouse, to the patient having to be the caregiver to the other spouse. I am really struggling with that – how our roles have reversed.” –Florine Tripp Support Group Leader Jefferson City, Mo.

●●● Speaker Suggestions ●●● 19

Invite an Outside Speaker When it comes to inviting a speaker to present to your group on caregiving, you’re in luck because there are so many different people and specialties that are appropriate. While some topics, like “What is a Right Heart Cath?” require the presenter to have a particular medical background, there’s no shortage of people who help strengthen the patient-caregiver pair. Feel free to be creative when looking for someone to speak at your meeting. Here are a few ideas to get you started.

Social Worker: Many of the changes that come with a PH diagnosis affect patients and caregivers on a very emotional level. Caregivers may also go through a grieving process, be stressed about taking on a new role and, in general, may feel very overwhelmed. A social worker is ideal to speak to your group about stress management, grief and other difficult emotions. Learning PHA Tip: skills that help with emotional coping prepares both caregivers and patients to best look after their health. We’ve said it before and

Planning for the Future: Often a caregiver will assume all responsibilities of planning for the entire family’s future. By bringing in an expert on financial or estate planning or someone who can speak about advance health directives, you can educate caregivers on how to best promote the family’s future security. However, be careful when planning a meeting like this to ensure that the speaker can be positive and supportive.

Add a Caregiver Perspective: Similarly, keep in mind that

we’ll say it again: the health of a PH patient depends upon the health of the patient-caregiver pair. Look for speakers who can promote the health of the pair.

you can always remind your speakers to add a caregiver perspective to whatever talk they give. For instance, if you have a nutritionist speaking at your meeting, remind him or her to also address the importance of healthy eating for those who don’t have PH. A speaker talking about stress management can also give tips on how caregivers can organize their responsibilities and take time for personal relaxation.

Industry Speakers: Some of the industry representatives you work with might be able to focus one of their own presentations on caregiving-related issues. Next time you to speak to them about coming to one of your meetings, ask if they can address caregiving.

Leader as Speaker If you either can’t find a speaker for your meeting or if you think your group would be more comfortable with a less formal meeting, you can still educate your group and get them thinking about striking a balance in caregiving. Here are some easy ways to try out this meeting topic:

In the News: Some people feel more comfortable talking about an issue if it doesn’t feel so close to home. One way to help your group open up about caregiving is to watch for stories featuring caregiving and illness in the news, in books or in magazines. These stories don’t need to be directly about PH. For instance, you might find one about how a college engineering student makes his parents’ home more accessible after one of them is injured in an accident or one about caring for a child with a rare illness. Print out enough copies for everyone to read and discuss the story. Use these stories to start a discussion about some of the changes a family may face during illness or how patients and caregivers can achieve balance in their lives.

Caregiver Resources: Another way to lead a meeting about caregiving is to put in some extra legwork ahead of the meeting and become knowledgeable about local resources that your members can use. One leader mentioned that she met with her nurse prior to her last caregiving meeting to come up with a list of resources. Also feel free to use the list of resources at the end of this booklet. Consider doing a couple of the caregiver-themed icebreakers and activities to get your group thinking about the importance of caregiving, then transition into sharing these resources so your members can continue to find education and support even after this meeting.

PHA Tip: Check the list of resources at the end of this guide to find links to local resources you can suggest for the caregivers in your support group.

“It is important to have a meeting once in a while to thank the caregivers, as we are going through this illness side by side with each other.” –Stephanie Layer Support Group Leader St. Paul, Minn.

●●● Sample Agendas ●●● 23

Sample Agendas It’s always smart to write an agenda so your meeting stays organized. Here are some sample agendas you can use.

Invite a Speaker

Caregiver Celebration 1. 2. 3. 4. 5. 6. 7.

Welcome! Housekeeping Confidentiality Statement Announcements Play “Little Known Fact” Lunch is served Patients share about their caregiver, present flowers 8. Wrap up 9. Reminder of next meeting

1. 2. 3. 4. 5. 6. 7.

Welcome! Housekeeping Confidentiality Statement Announcements Introductions Icebreaker: Two Truths and a Lie Activity: Caregiver Word Web (example next page) 8. Speaker: Stress Management 9. Reminder of next meeting

Leader as Speaker 1. 2. 3. 4. 5. 6. 7. 8. 9.

Caregiver Discussion

Welcome! Introductions Icebreaker: Take What You Need Housekeeping Confidentiality Statement Stories from the news Go over list of resources Wrap up Reminder of next meeting.

1. 2. 3. 4. 5. 6. 7. 8. 9.

Welcome! Housekeeping Introductions Confidentiality Statement Icebreaker: Little Known Fact Discussion: Reciprocal Care Breakouts: Patient and caregiver Wrap up Reminder of next meeting

Using a Word Web: Making a Word Web can guide your discussion and help you determine what topics are most interesting to those in your group. This exercise links related topics and promotes even deeper discussion than usual by bringing up ideas that don’t always get touched on. Here’s an example of what a Word Web might look like:

Active Lifestyle

Financial Stability

Loss

Husband /Wife

Medical Appts.

Caregiver Family Child

Jobs Paid Employment Support Structure Chores

When doing this activity always begin with one word (in this example “Caregiver”). Write the word on a whiteboard or poster and let others suggest a list of words that they feel define or are linked to the first word. On this chart Family, Jobs and Loss are the words we chose to use. At this point you can ask members to think of words associated with those three words and write those down as well.

“At my group’s patient and caregiver appreciation, we had a newly diagnosed woman and her husband attend for the first time. Prior to this meeting the woman’s husband did not believe she was sick and was not taking on the role of her caregiver. After hearing patients and caregivers thanking one another, the husband was wiping tears and has realized that he must step up as a caregiver.”

–Doug Taylor Support Group Leader Midlands, S.C.

●●● Additional Resources ●●●

Additional Resources Still want to learn more about caregiving? Want more information to pass on to your group? Read on!

PHA Resources Caregiving Video for Leaders

Telephone Support for Caregivers

Caregiver Mentors

Caregiver Web Resources

For our Second Tuesday training in November 2011, we featured two experts speaking on the topic “Pursuing Balance in Caregiving.” Get some ideas you can pass on to your group. If the caregivers in your group are interested in continuing conversations with other caregivers, point them towards PHA’s Caregivers Telephone Support Group and the Caregivers Email Group. PHA also has an Email Mentors program which patients and caregivers can use to correspond with others who have dealt with similar experiences. We have several caregiver email mentors. PHA is expanding the Caregiver section of our website in Spring 2012 which will include articles on issues such as identifying depression in yourself or your partner, caring for your relationship and helping children and siblings of PH patients cope.

www.PHAssociation.org/SecondTuesday

www.PHAssociation.org/Caregivers/Support

www.PHAssociation.org/Mentors

www.PHAssociation.org/Caregivers

Ideas from Other Leaders Your fellow support group leaders have years of experience and willing to share their tips:  If you’re on Facebook you can join the Pulmonary Hypertension Support Group Leaders group and join in on the conversations leaders are having with one another. Email us to request to be a member: SupportGroups@PHAssociation.org  Feel free to share ideas or questions on our Support Group Leader Yahoo Group. Contact us to be added to this list.

More Resources 1. The Family Caregiver Alliance provides tips on caregiving, online discussion groups and links to each state’s resources. www.caregiver.org/caregiver/jsp/home.jsp 2. The National Family Caregiver Association has information on caregiving and features topics that are useful to caregivers, like managing finances. www.nfcacares.org/ 3. If your members are looking for state-specific caregiver resources, they can use this website. Depending on the state, it may list local support groups, non-profits, financial aid resources and more. www.caregiver.com/regionalresources/index.htm 28

Notes

801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004 â&#x20AC;˘ Fax: 301-565-3994 Patient-to-Patient Support Line: 800-748-7274 www.PHAssociation.org SupportGroups@PHAssociation.org