Finding Support as a Caregiver: A Special Section

As a daughter (I'm the eldest of 6), wife and mother, I've done quite a bit of caregiving in my life. I was raised in a pretty traditional family, where my dad went to work and my mom handled most of what went on inside the house. My mom did work part-time and my dad's job was flexible enough that he also helped with homeschooling us but the house was my mom's domain and she is the most nurturing person I know. I'm definitely not as nurturing naturally, but I had really good role models in my parents and now, my husband. Characteristics of a caregiver When I was diagnosed with stage IV metastatic breast cancer in mid-2017, I'd already gone through the initial or active treatment typical of an early stager. We thought I was stage II for a few months and my family had already rallied around us to get through chemo. Within a few days of knowing I had to do chemo, my mom had arranged for one of my siblings and their spouses to come each weekend of the 4 AC cycles. When I found out I was stage IV, my mom came herself and spent just about the entire summer of 2017 sleeping on couches, hospital beds, and fold-out beds. Caregiving requires presence That's one of the primary hallmarks I've noticed about caregiving, it requires presence. Either my sweet husband or my mom was with me during each visit with a doctor or each overnight at a hospital, even when I said I could handle it myself. Given that I had 4 surgeries, multiple hospitalizations, many scans, and doctors appointments all the time, my mom being present and basically chauffeuring me around assisted my husband in maintaining his job. My husband maintaining his job means that we have health insurance. Caregiving requires showing up not only for the patient but also for the other caregivers. Caregiving requires more than one person That's the second piece of caregiving that I've noticed, it requires more than one person. If caring for me was left to just one person, that one person would have little downtime, especially in the beginning when I could barely move. The mets to my bones meant that I had to be non-ambulatory for a while, then I graduated to a walker after surgery, then canes, etc. Getting to the bathroom was its own challenge for some time and I couldn't shower unassisted for quite a while. My sweet husband simply couldn't be around all the time. My mom is not as young anymore and she needs a break. My dad, sisters, and brothers have also pitched in. Many forms of caregiving The third piece of caregiving that I've noticed is that there are many forms of caregiving. Just as we are all made up of many parts, each person in our lives may be better at one type or another. From my metsters online, I am supported with cancer "hacks," commiseration, and confirmation that we are all dealing with something similar. From my psychiatrist, I am supported by both mental health medication and psychological support. From my other doctors, I am supported with the various and specific specialties, including the knowledge of when I need something from a new doctor. From my "old" friends from before cancer, I am supported by people who have known where I have been. From my "new" friends from after cancer, I am supported by people who know me as I am now. From my family, I am supported in so many ways by people who know me, who love me and value me for who I am. From my mom, I am supported by a survivor who has been through much of what I face each day and by the person who has known me best and the longest. From my dad, I am supported by a licensed mental health therapist who has walked the cancer path with my mom. From my children, I am supported by unconditional love and snuggles. From my husband, I am supported by unconditional acceptance and consistency and loyalty. I can't imagine how I would be able to do as well as I'm doing without all of this caregiving from all of these disparate people. Assisting the patient The fourth piece of caregiving is assisting the patient with their own caregiving & responsibilities. My husband and I have two boys. I couldn't care for them by myself for a long time and, even two years later, I often need help. My boys still need me to be their mom, but when I can't pick them up from school or correct them at the moment or complete their homework, there are people in my life who I can lean on to help me be their mom. Showing up I am well aware that I am extremely blessed to have many people in my life who show up for me. I've been surprised at times who has actually shown up. There were people that I expected to show up who didn't and those people who I never expected to show up, who stalk me regularly to make sure I'm ok. I'm not always good at accepting help from the people who care for me, but I am getting better. How can you show up to care for someone today? Is there someone unexpected who is providing care for you? Have you thanked all the people who have cared for you? Is there someone else you need to ask for help? Are you a caregiver with a story to tell? We want to hear from you! Share your story [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] When your loved one has cancer, you, the caregiver, need help too. The type and frequency of help that's needed can vary dramatically from person to person, but extra support for the caregiver is a must. The nonprofit Cancer Support Community surveyed its members and found that these were the caregiving tasks they most often performed: 98% provided emotional support 96% went with their loved one to medical appointments 82% helped with decision-making 79% coordinated medical care 80% provided transportation 74% helped manage finances1 To help you find the support you need, AdvancedBreastCancer.net put together some resources for you, the caregiver of a person with cancer. Caregiving can be challenging, but you don’t have to do it alone. Here are a few suggestions for finding the services and assistance you need to make this journey less stressful. [native] The treatment team Many cancer treatment teams include a nurse, patient navigator or social worker who specializes in answering patient and caregiver questions. If you have questions about services or need extra support, these members of the treatment team are often excellent resources for finding practical help specific to your community and your person’s needs. Because your treatment team works with so many patients, they’ll probably have recommendations for support groups, helpful services, and ideas that have worked for other caregivers. Hospital apps Many hospitals now have mobile apps designed specifically to support their cancer patients and their loved ones. What’s included in an app varies by hospital, but most include maps with wayfinding directions to help you move between the parking garage and the various locations for specialist appointments, radiation, testing and more. The most robust apps include let you download the overall treatment plan, use a calendar to keep track of appointments, access test results, and list medications and contact information for the treatment team. Online support Whether you’re using an Apple or Android mobile device, an iPad or a desktop, there’s an app, podcast or web site designed to help you with cancer caregiving. Here are a just a few examples: Medication regimens for cancer can be complicated. If you’re worried your person isn’t taking their drugs properly, the MediSafe app can help. It lists all the medications and sends your loved one personalized reminders when it’s time to take the next dose. It also sends caregivers real-time missed medication alerts. Podcasts can provide a wealth of information to help you better understand your loved one’s cancer, how you can help them, and find the extra support you need as a caregiver. Cancer.net, Frankly Speaking About Cancer, and CancerCare all examine various aspects of caregiving, including the most important, self-care. Associations such as the American Society of Clinical Oncology and American Cancer Society support online communities where caregivers can ask questions and offer one another support. Websites like MyLifeLine and Caring Bridge allow you to create individual websites where you can share updates about your loved one and coordinate help from friends and family. Help with long distance caregiving Today’s family and friends often live far apart from one another, so long-distance caregiving is a reality for many. The good news is that a wealth of advice, services and apps are available to help long-distance caregivers with everything from communications to transportation to laundry. Here are just a few: If you aren’t able to drive your loved one yourself, you can order an Uber or Lyft through GoGoGrandparent.com for a small additional fee. The service allows you to schedule rides for regular appointments and will text you when your loved one is picked up and dropped off. Lotsa Helping Hands and Caring Village help you coordinate and communicate with local helpers and the treatment team. These apps allow you to group message others to ask for help with transportation, meal delivery, errands, and companionship, and lets them provide feedback on how your person is doing. Caring Village also lets you store important documents and medication lists. Savor Health provides meal delivery for cancer patients. At $300-$500 per week for two-three meals a day, it’s pricey, but the meals are tailored to each patient’s nutritional needs and personal preferences by an oncology dietitian. If your loved one is a low-income senior, Meals On Wheels can be an excellent resource for nutritious food, transportation, pet care, and medical equipment. If your person needs help with a complex medication regimen, an automated pill dispenser may provide the answer. These dispensers can be loaded with medications weekly or monthly and programmed to open and dispense drugs at a set day and time. Recharging your caregiving batteries Recognizing the vital role that caregivers play in a cancer patient’s life, a host of national organizations offer online and in-person support. These resources include: Cancer Support Community offers an excellent booklet on caregiving from a distance with practical tips for all aspects of taking care of someone with cancer. Family Caregiver Alliance hosts a state-by-state database to help caregivers locate public, nonprofit, and private programs and services in all 50 states. Springboard Beyond Cancer offers a long list of caregiver resources and is sponsored by the National Cancer Institute (NCI). The NCI also publishes a caregiver booklet. Remember, caring for someone with cancer does not mean that you must do it alone. These are just a few of the resources you can and should call on to help you manage your loved one’s care. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] ,When someone you love is sick, it can cause stress and anxiety. Illness, especially cancer, can take a physical and emotional toll on caregivers and family, particularly when they are far away. For everyone dealing with a cancer diagnosis, there is generally worry and uncertainty. Around 7 million people in the US today are caregivers; nearly 20% perform this role long distance. As baby boomers continue to age, the number of caregivers is projected to increase significantly in the coming years. Developing strategies to partner in caregiving can help families stay involved with the progression of treatments, and ease the varied burdens of a cancer diagnosis on families. [native] What is caregiving? Caregiving describes the time and attention needed to care for relatives or friends when they require additional support caring for their own needs. Help provided can take different forms; it may include everyday tasks like grocery shopping, transportation, and meal preparation. It can also encompass managing medical appointments and household finances, and full-time personal care. Caregiving is generally unpaid, done out of love or sometimes a sense of obligation. Caregivers can come from different places: a husband, wife, or partner, a child, parent, or sibling, other relatives, friends, even neighbors. Someone close to the patient is the most important non-medical member of the care team. Yet the fears and urgency of caring for someone so ill can take a physical, psychological, and financial toll on caregivers and their own families. Caregiving can take its toll Caregivers often experience physical and psychological side effects when caring for a family member or friend. Studies have shown that those who provide informal, unpaid care to someone with significant limitations to their independence can experience a negative impact on their own health and personal lives.2 For example, some people don’t take the time to eat right and exercise; this may result in both weight gain and mood disturbances. Others may find they don’t have the time for a social life or to participate in their regular leisure activities. Long distance caregivers Those who live far enough away that they are unable to have daily, face to face interactions with their relatives are known as long-distance caregivers. Caregiving can be more complex when distance, time, cost, and other factors limit accessibility. Factors like work, family, and transportation can affect the ability to sustainably provide care. Communications from long distance caregivers can be occasional or regular, but for many, it is more just periodic checking in. Making a phone call to say hello and share updates about work, family, and life, in general, is an example of how long distance touchpoints have value.2 Challenges of long-distance caregiving Long distance caregivers have support needs that may differ from nearby caregivers.2 They typically are not part of the medical team and thus have limited relationships with or access to the doctors involved in care and treatment of their loved one. Many report high stress and anxiety over the changing health status of their loved one.2 The impact on family dynamics can also be stressful when care is split between nearby and long-distance caregivers. If the primary caregiver is nearby they may feel that the family member or friend who is far away may be of less help, and not feel the same impact of the burden of caregiving. This can lead to resentment and disputes. Yet, studies have demonstrated that caregivers who are unable to see their family member regularly are stunned by physical and functional changes associated with cancer treatments. This can result in experiencing more stress for the remote caregiver over the dramatic changes seen, due to lapses in time between visits. By comparison, for caregivers nearby, observed changes in a loved one undergoing treatments are more gradual. Staying connected across any distance There are steps long-distance caregivers can take to stay connected and participate in a more involved way. When someone you love is sick it can be upsetting and disruptive. Getting to know the medical team providing care, whether in the hospital, medical office or at home, can help you stay connected with medical updates and treatment decisions. Some people use technology to stay in touch. For example, FaceTime and Skype can be used for video chatting and offer a sense of being closer.2 Technology can also make it possible to be a part of medical appointments and treatment decision discussions. Try to arrange in advance for some kind of video conferencing technology with the medical team. That way you can listen to what the doctors have to say as well as ask questions.2 Research supports findings that long-distance caregivers do better personally when they participate in appointments via videoconference, get their own personal counseling time with social workers and improved access to medical information and caregiving resources.2 Long distance caregivers who are heavily involved in caregiving estimate they spend at least one day a week managing the affairs of their loved one. They report missing work, having to rearrange their schedules, and other distractions when caring for someone far away. Practical tips for long distance caregiving Stay in touch Regular contact makes people feel more connected Make a schedule for phone calls Plan ahead for travel, if possible Keep up to date with their medical team Set up regular communication time Call Email/text Skype or FaceTime Use technology Send family photos and videos to keep your loved one involved Establish a videoconference routine with providers Make a budget and help track expenses Get help Accept support from friends and family when you need to be away Find a support group in your own community Most importantly, remember to listen to your loved one, support them when making treatment decisions, and prioritize your own self-care. There may be a distance between you and your loved one, but that doesn't mean you can't still support and care for them. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Receiving a diagnosis of advanced breast cancer can be a life-altering experience, not only for the person diagnosed but also for the spouse, child, parent or friend who becomes the person’s primary caregiver. The role of caregiver can become a challenging job, both emotionally and physically. The better prepared you are in managing life as a caregiver or care partner of a loved one with advanced breast cancer, the easier the outlook will be for everyone. Take care of you As a caregiver of a loved one with advanced breast cancer, you have an important job to do. However, the most important job is to take the best care of yourself. Take time for you, eat healthy, exercise regularly, stay positive, and continue with your personal and social life as much as possible. Try not to put your life on hold, and continue to enjoy your hobbies or social groups as much as you can. Caregivers should also try to maintain as normal a schedule as is feasible. Find ways to relax and manage stress. If necessary, ask for help yourself. You may be the support of your loved one, but it is certainly okay to need support as well. If you’re feeling exhausted, overwhelmed, or too stressed to think clearly, then you can’t be at your best, as a person or as a caregiver. [native] Educate yourself Educate yourself as much as possible about your loved one’s diagnosis, so you will know how to help. Learn as much about managing advanced breast cancer as possible, without getting yourself overwhelmed by information. Information overload is certainly an issue, however, you may be more effective if you are well informed and advised. Utilizing support groups or online communities like ours can be a great place to start without feeling inundated with massive amounts of information. Educating yourself will also help prepare you for any changes in your loved one’s health or behavior. An effective caregiver is a well-informed caregiver. Join a support group Joining a support group is a great way to share feelings, experiences and gain helpful advice. You may need someone to talk with openly and honestly, or someone to listen to and support you. It may be reassuring to know that you are not alone and that there are others on a similar journey as you. Although our community has a lot of information regarding first-hand experience with advanced breast cancer, we also have information and a network for caregivers! Stay organized Being organized and setting realistic goals can help both you and your loved one address each day. Try as best as possible to be organized with medical information and records. Focus on making daily or weekly to-do lists, and working with your loved one to make plans and goals. Organize doctor’s appointments and prescriptions, and try to keep notes of physician encounters, as well as changing medications, symptoms, or behaviors. The caregiver’s role can sometimes be challenging; from learning about the condition and how best to help your loved one, to remember to also care for yourself. It’s important to adjust to your new role while maintaining a healthy and supportive relationship with your loved one. Let us know how you take on the responsibility of being a caregiver, or how your caregiver makes an impact on your journey! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],When someone you love has advanced breast cancer, it can be overwhelming. As a caregiver, your role is vital to their well-being. You may be helping with daily tasks, offering emotional support, and making sure they get the medical care they need. Caregiving is not easy, but knowing what to expect and finding ways to cope can make a big difference.1 What breast cancer caregivers provide Caregivers for someone with advanced breast cancer take on many responsibilities. These can range from helping with everyday tasks to offering emotional support during difficult times. While each caregiving experience is unique, there are some common duties that many breast cancer caregivers share.1-3 Practical tasks As a caregiver, you will likely handle many practical tasks. These may include:2,3 Helping with medical appointments – This might involve scheduling doctor visits, keeping track of treatments, and driving your loved one to their appointments. Managing medicine – You may need to ensure that medicines are taken at the right times and in the correct doses. Helping with daily tasks – This can range from cooking, cleaning, and grocery shopping to assisting with personal care like bathing or dressing. Coordinating with healthcare providers – It is important to stay in touch with the healthcare team to understand the treatment plan and any changes in your loved one's condition. Emotional support Aside from practical tasks, caregivers also offer emotional support. Breast cancer can be physically and emotionally draining for the person diagnosed. Having someone to listen or just be present can make a big difference.2,3 Your loved one may have fears, frustrations, or sadness. Simply being there to share in these feelings can give them comfort. Getting support as a caregiver While caring for someone with breast cancer is rewarding, it can also be exhausting. Remember that caregivers need support too. You do not have to do everything alone. Here are some ways you can get the support you need:1-3 Ask for help – Reach out to family, friends, or people in your community for help with specific tasks like cooking or cleaning. Sometimes just having someone to run errands can be a big relief. Join a support group – Connecting with others who are also caring for someone with cancer can be comforting. A support group gives you a space to share your feelings and challenges. You can also learn from others who are going through similar experiences. Talk to a counselor or therapist – If you feel overwhelmed, anxious, or depressed, consider speaking with a mental health professional. A counselor can help you process your emotions and find healthy ways to cope. Use respite care services – Respite care allows you to take a break while a professional cares for your loved one. Taking time for yourself is not selfish. It helps you recharge and continue to provide quality care. Ways to cope with caregiving Caring for someone with breast cancer can be both physically and emotionally demanding. It is important to find ways to cope with the stress of caregiving. Here are a few tips that can help:2,3 Take care of your own health – Try to maintain a healthy diet, get regular exercise, and sleep well. These may seem like simple things, but they can make a big difference in how you feel. If you neglect your own health, it will be harder to care for your loved one. Set boundaries – It is okay to say no sometimes. You cannot be everything to everyone. Decide what tasks you can reasonably handle, and be clear with others about your limits. Stay organized – Keeping a calendar or to-do list can help you stay on top of appointments, medicines, and other tasks. Being organized can reduce your stress level and help things run more smoothly. Take time for yourself – Whether it is reading a book, going for a walk, or spending time with friends, find activities that help you relax and recharge. Taking small breaks throughout the day can help you avoid burnout. Stay connected – Do not isolate yourself. It is easy to get caught up in caregiving, but maintaining connections with friends, family, and social networks is important for your well-being. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Finding Support as a Caregiver: A Special Section

Caregiving: A Patient's Perspective

Resources for Cancer Caregivers

Long Distance Caregiving: Staying Connected

Five Helpful Tips for Caregivers

Caring for a Loved One

Three Legal Documents Caregivers Need

Managing Cancer Side Effects as a Caregiver

Find Your Advocate: Oncology Social Work

How to Help a Loved One in Denial About Their Illness