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}}:"],Caregiving is defined as everything that is done to assist someone due to that person’s disease. When someone has advanced breast cancer, caregivers may be family members or close friends. These caregivers are differentiated from professional caregivers because they aren’t paid, and many are not trained for their new role. Caregiving may also encompass a range of involvement, from the partner or spouse of the woman with breast cancer who may be integrally involved in care, to friends and other family members who may play a smaller role. Each part of the caregiving team is important and can help support their loved one going through treatment for breast cancer.1,2 There are many ways caregivers may help as part of the cancer care team. They may help keep track of medications, side effects, and attend doctor’s appointments with their loved one. In addition to the physical and practical care, caregivers often offer emotional support to the person dealing with breast cancer.1,2 Helping with practical tasks Caregiving may start gradually with practical tasks. Practical tasks that can be helpful for caregivers to pick up include1,2: Driving the person to doctor or treatment appointments Attending doctor’s appointments and taking notes Researching about breast cancer and treatment options Helping with household chores Running errands Preparing meals Assisting with child care Keeping others informed Managing finances or insurance policies Keeping track of medications Providing emotional support Each person is unique, and every individual with cancer will have their own needs and preferences on what emotional support looks like. It’s important to ask your loved one what they need or would like, and ask often, as needs may change. Some people may just want someone to listen without offering suggestions or opinions. Some may want positive thoughts, while others just want to be able to share their fears or grief. Let your loved one take the lead and respect their wishes. One of the most important things is to keep showing up. Knowing that they can count on you to be there for them can bring much reassurance during a difficult time. Getting support as a caregiver When taking on a caregiver role, it is easy to let your own health and well-being fall to the wayside. While it may seem like you need to put yourself second in order to make someone else your first priority, this isn’t always the case. When your health and wellbeing break down, so does your ability to effectively care for and aid someone else. Having an ineffective and unhealthy caregiving relationship can prove to be detrimental to both you, and your struggling loved one in the long run. Caregivers need to take care of their own health, including getting enough sleep, regular exercise, and eating a balanced, healthy diet. It’s also important to take time out from caregiving duties to do things you enjoy. Ask for help from family and friends to fill in when you need a break, and seek professional help if you feel overwhelmed by depression or anxiety. [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

Community Poll

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