Caregiver Empowerment: How to Support Your Loved One
Former First Lady Rosalyn Carter said, “There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”
In a time of need, are you prepared to care for a family member or friend?
There are many types of caregivers. The needs of each are unique. But at the heart of caregiving is compassion for a fellow human being.
As we will layout, there is no one way to be a caregiver. We will address four key topics – what a caregiver is, communication, caregiving self-care, and resources – and explain the importance of mental, emotional, and spiritual health.
Now, you may be wondering, “How hard can it be?” Extremely. Bathing, dressing, using the restroom, diet, nutrition, and finances – all of these are essential to everyday life. For someone in need of care, these can be life-and-death decisions.
A caregiver generally is not a medical professional. We will offer tips on how to communicate with a healthcare team. (And do not be afraid to ask questions!)
During your time as a caregiver, it’s important to remember your feelings, your emotions, your life. Being a caregiver can be an emotional roller coaster, making it difficult to balance caregiver duties with your other life responsibilities.
But you can do this! Throughout this guide, keep in mind that we don’t have all the answers. Each caregiver situation is unique, but our experts do offer a broad overview of the process.
Communication is key. If you feel trapped with no one to talk to, know there is help. Take advantage of the resources in this guide. Remember: You’re always one of only four kinds of people in the world.
This article is a reference, not necessarily something you need to read top to bottom, though, you could! Its aim is to help caregivers navigate their role as efficiently and practically as possible while also giving them the support they need to be the best caregivers they can be.
What is a caregiver?
This section provides information on who a caregiver is/can be and what their role is in the patient's cancer journey including assisting with the patients’ physical, mental, emotional and spiritual needs.
We cover how to effectively communicate with patients who are dealing with a cancer diagnosis, and treatment choices. It also covers how to be a patient's advocate in communication with their medical team to be sure the patient's wishes are being heard. Lastly, it covers how to speak with other family and friends in sharing the patient's cancer journey and balancing the needs of the patient with the needs and desires of friends and family.
You'll need to take care of yourself, too! Caring for a loved one with cancer can be confusing and exhausting mentally, physically, emotionally, and spiritually. We share tips you can use to keep yourself as healthy as possible so that you can put your best foot forward for the patient through their cancer journey.
Offering online resources and support for caregivers and provides tools for finding local support and resources.
This article is intended to equip caregivers with helpful information and practical tools to fulfill the needs of both the patient and themselves, including:
- a better understanding of what your loved one is experiencing;
- practical ways to support your loved one;
- ways to communicate with the patient, medical teams, and other family and friends;
- keeping your needs in sight;
- resources for getting support in your caregiving efforts.
Cancer Tutor encourages caregivers to take control of the situation, to not allow circumstances to dictate your physical and emotional well-being. Empowering yourself begins now.
Understanding your role as a caregiver
“The closest thing to being cared for is to care for someone else.”
― Carson McCullers, The Square Root of Wonderful
A caregiver is a person who provides practical, physical, mental, emotional, and even spiritual support to a cancer patient. People who fill this role can range from spouses to family members, friends, or members of the community. Care levels can range from regular visits and check-ups with the patient, to providing 24-hour care.
What does a caregiver do?
Dee Braun, who is in the natural health field, has experience being a caregiver for cancer patients. She shares her experience:
“If the cancer patient is doing well, obviously it wouldn't need to be a 24-hour job. But, they are the person who sees and hears the most about what the patient is going through. They are the one who is – for those of us who are parents, it is very similar to parenting. Take your medicine, yes you need to eat. Listening to thoughts and questions, and regrets and everything that a cancer patient may not want to talk about.
“It can be physical like carry oxygen tanks, helping the patient in and out of chairs, in and out of bed, help them bathe, help them in the shower. Helping with wheelchairs and walkers.”
Responsibilities can include daily tasks such as dressing, giving medication, meal preparation, accompanying a patient to a medical appointment, or offering emotional support when a patient needs it.
Caregiver responsibilities can include some, or all, of the following:
Physical care will depend on the needs of the patient. Some ways in which a caregiver can help with the patient's physical needs include:
Medical interventions and medications
A patient may need a nurse to manage wound care, medical equipment or other medical interventions. Learn about the medications and procedures the patient is currently receiving and ask questions to the medical care team to learn what they are and what they do. The patient may also be taking medication for other chronic ailments like high blood pressure or diabetes. The more you know, the easier it will be for you to understand what is happening on a daily basis for the patient, and, the easier you will be able to perform your caregiving goals.
A list of medical topics that are helpful for you to know include:
- specific diagnosis and staging
- any side effects the patient may experience and how to manage them
- length of any treatments
- any risks and benefits of a specific treatment
- other treatments that may be available to the patient
- where you can receive more information
- a medical team contact if you have any questions
Depending on how mobile your patient is, physical care may include helping the patient move around in bed, offering gentle massage, assisting with getting dressed, or getting a blanket or pillows. Help with pain management may also play a role. Learn what helps, and when pain medications or other treatments are necessary.
A healthy diet can give a cancer patient a running start through, and beyond, treatment. Make nutritionally dense, whole foods regularly available to your patient. Certain treatments can cause a patient to feel nausea making it difficult for them to eat. Do your best to offer them simple, easy on the stomach food choices. In some cases, food is being used as a means of treating cancer. If this is the case for your patient, learn all you can about their chosen diet so you can help them fulfill the diet requirements.
Depending on your patient's physical abilities, you will want to keep them as active as they can be throughout treatment. Short walks, chair exercises, light hand weights, and even yoga may all be appropriate.
Healing from cancer takes a lot of energy. Cancer patients need their sleep. Sometimes, it will seem they sleep a lot. This isn't surprising for someone who is on a healing journey. Encourage your patients to get regular sleep and all the naps they need to feel well-rested.
Keeping a clear mind can be very difficult for a cancer patient. Helping them stay organized and helping with reminders for medications, doctors appointments, and other things can relieve a huge burden for the patient, so they can put that energy toward healing.
To add to the pressure of some cancer patients, they may experience what is known as, “chemo brain”. The Mayo Clinic describes the chemo brain as, “a common term used by cancer survivors to describe thinking and memory problems that can occur during and after cancer treatment. Chemo brain can also be called chemo fog, cancer-related cognitive impairment or cognitive dysfunction.”
This can be incredibly frustrating and debilitating to the patient, and caregivers need to keep their condition top of mind when communicating with the patient. If a patient is dealing with chemo brain it is important to keep track of any symptoms they may be having in order to report them to their healthcare team.
It is important to be aware of the state of your patient's mental health. Experiencing an emotional low can be expected in newly diagnosed cancer patients. However, sometimes, it can be more than just a situational low. Do they seem angry? Anxious? Depressed? If so, follow up with encouraging them to get professional help. Taking care of mental health issues as early as possible will go a long way in the patient managing treatment and recovery effectively.
Today, there is a large body of research that supports the idea that spiritual well being can contribute directly to healing. Prayer, meditation, mindfulness, and other tools, along with having a strong spiritual support community has been proven to directly affect health in a positive way.
Helping with treatment decisions
More often than not, a patient can be so overwhelmed with information and emotional and mental distractions that they will need help making decisions. Remember, you are part of a team. Get all the facts straight and present them to the patient in as clear a manner as possible.
In the end, it is the cancer patient who must make the final decisions in relation to their treatments. Making these decisions can mean giving the patient a feeling that they are being proactive and can help them feel more in control of their situation. It is important to be supportive of their decisions.
Making a caregiver plan
There are several things to think about when creating a caregiver plan for your patient. This guide supplies a Caregiver Plan Worksheet below that you can use to keep track of some of the caregiving responsibilities, help you document important information, stay organized, and make the job of caregiving more manageable.
“As your care recipient’s advocate, be involved, don’t accept the status quo, and don’t be afraid to voice your concerns.”
― Nancy L. Kriseman, Mindful Caregiver: Finding Ease in the Caregiving Journey
Talking with the cancer patient
A cancer diagnosis can stir many different feelings in a patient and their family. Feelings of fear, sadness, anger, and helplessness are extremely common. Honest, productive communication can help temper some of these feelings. Having a caregiver provide practical support along with a comforting presence can be invaluable for a patient.
Cancer and natural integrative treatments
Understand that the ultimate health care decisions are to be made by the patient. As a caregiver, it can be difficult when you believe a different treatment than what they’ve chosen is better, especially when it comes to unconventional treatments.
Natural health advocate Dee Braun explores how to approach this topic with the patient:
“Well, first of all, do your own research and have the information, take notes, bookmark websites and let them know what you found. You are not talking them into anything. You are providing information and present it to them and then realize that that is all you can do. You cannot make up their minds for them. You cannot talk them into taking the natural route. You cannot change them into staying away from chemo by saying it's poison. You cannot resent it if that's what they chose. Your role and the role of all family and friends are to present solid information and support their choices because it is their life, not yours.”
Some ways you can provide open, effective communication include:
Allowing the patient to guide conversations
Let them decide what they'd like to talk about. Don't pressure the patient to talk about something they aren't ready or willing to discuss. Let them set the pace of their own openness.
Choosing your words carefully
Expressing acknowledgment of how difficult the experience is for the patient can go a long way. This can include saying something as simple as, “That must be really hard,” instead of, “I know how you feel.”
Honesty opens the way for better communication, though, it is important not to dwell too much on your own struggles. Be brief and then make space for moving the conversation on. If you are at a loss for words, tell them that instead of avoiding them. Sometimes sharing silence is the best approach.
What you don't say can be just as important as what you do say. While offering verbal support to the patient is a start, it is also important to show them that the line of communication is open. Simple gestures like eye contact, facial expressions, and even just having a physical presence can convey your support.
Sometimes a patient just needs an ear. This can also be helpful for you as the caregiver. Listening allows you to connect with the patient's experience. Give your full attention and don't worry about how to respond. Just listen.
More to life
Encourage talking about topics you know the patient enjoys, or topics about ‘regular' life. This can give them a sense of normalcy and continuity.
Encouraging life involvement
Help the patient keep engaged in life, in whatever capacity they are able. Promote active participation in household chores, errands, appointments, school, pets, and community functions. This can help a patient feel like they are still participating in life, despite their diagnosis and treatment.
Talking with the healthcare team
Effective communication between caregivers and patients and the medical team can be critical to the best outcomes, both physically and emotionally, for the patient. Keep an open dialog going with the medical team so they can better understand the patient’s wants, needs, and feelings. A caregiver can be an effective advocate for a patient by:
Being present at appointments or during other times when the patient interacts with their healthcare team offers both support to the patient, as well as a second set of ears to sort through the medical details.
Identifying yourself as a caregiver
When the medical team recognizes you as a caregiver you are providing them with a communication point that extends beyond the patient. With the patient’s permission, they will be able to share medical details with you to help you give the best care you can give.
Listening carefully to what the medical team says is important in understanding the medical care choices of the team. Taking notes can be helpful, here, as sometimes it's hard to remember or understand what they say. This will give you the opportunity to do any research you would like to do so you can best understand the care they are giving the patient. It is also helpful so you are able to better explain to the patient what is happening as, sometimes, the patient is overwhelmed and doesn't have much mental room for details.
Don't be afraid to ask questions if you or the patient are confused or don't understand something. Ask questions the patient has shared with you if they are unable, as well as any questions you may have, yourself. Again, two heads are better than one and more ground can be covered so you have a broader, more accurate perspective and understanding of the situation.
Medical team contact
Be sure to document contact information for medical care team members in case you have any questions or concerns that need to be quickly addressed.
Talking with family and friends
As the patient's caregiver, you may be the liaison between the patient and the rest of their family and friends. In this capacity, a caregiver may need to convey important information about the patient to others. Effective ways to communicate with other family members and friends in a caregiver capacity may include:
Giving medical updates
This is where keeping notes come in handy. Giving family members regular updates can keep curiosity and concern satisfied and help family and friends process the situation, as needed.
Take the lead in communication
Some family and friends may avoid communication with the patient as they are unsure of what to say or how to help. Allowing them the space to talk about it can be therapeutic for them. It can also open the door for more natural discussion beyond cancer.
Let them help you
If other family members or friends offer to help you, accept their help. There are many opportunities where they can help alleviate some of your responsibilities including running errands, helping with household chores, preparing meals, and even providing some respite so you can take some necessary time for yourself and the rest of your family. Just say yes!
Speaking with children
Even without being told, children are surprisingly sensitive to what goes on around them. You may want to protect a child from a situation, but talking about it openly is almost always the best way to move forward. Communication with children need not be complicated. Simply explaining the basic situation and what is happening to their loved one can open the way for children to express their thoughts and feelings. It shows them you are open to listening to them and answering any questions they may have.
Caring for the caregiver
“Many caregivers share that they often feel alone, isolated, and unappreciated. Mindfulness can offer renewed hope for finding support and value for your role as a caregiver.”
― Nancy L. Kriseman, Mindful Caregiver: Finding Easecb: Finding Ease in the Caregiving Journey
Importance of self-care
Don't forget about you! If you are not taking care of yourself first, it will be almost impossible to care for anyone else. Giving yourself the things you need is critical to being there for your cancer patient for the long haul.
You need to consider several areas for self-care including physical care, mental care, emotional care, and spiritual care.
Eating well can go a long way in giving your body the nutrients it needs to offer the best in both physical and mental care. Choosing nutrient-dense foods like vegetables and fruits often will help supply you with the energy and nutrients you need to keep physically healthy. Choosing a variety of vegetables and fruits daily can help you fulfill the nutritional requirements of many different vitamins and minerals so you can think less about what you're eating, and more about caregiving. Choosing more whole foods can also make it easier as they don't require much effort to prepare. Ways you can eat better include planning meals ahead of time, preparing a variety of fruits and vegetables, consume ‘good' fats, limit alcohol, salt, and sugar, avoid skipping meals.
Take regular breaks to keep your body moving. Regular walks can go a long way in getting the circulation going, moving muscles, and even clearing your mind. Yoga can also be extremely helpful. If you find it difficult to take enough time away from the patient, try chair exercises. You can find instructions online.
Dee Braun shares her experience on fitting exercise in, as a caregiver:
“Actually, I would highly suggest that you talk the patient into getting a rebounder if they don't already, and you bounce on it too. It is low impact, it is good for you. It burns more calories than jogging without harming your joints. It's fun, and you can put on music or headphones for 5 minutes and dance around there like an idiot and it is amazing how much stress that relieves. Going for a walk, as I mentioned before. Put on a TV show that you both like, preferably a comedy, and laugh. Laugh. Some of my best memories with Ray are watching really dumb shows that I don't even like, you know, but they were funny and they gave us a brief break from all of this seriousness and the darkness.”
Aim for a minimum of 30 minutes of exercise 3 times per week. Work up to it, if you need to start slowly.
Just like a cancer patient, the caregiver needs to get enough sleep to offer their best to the patient. Get your eight hours a night, and, don't be afraid to take cat naps if you feel they are necessary. Trust and listen to your body.
Mental health – stress and burnout
Stress is an inevitable part of being a caregiver. Most people can handle minimal levels of stress, but filling a caregiver role can turn it up a notch. Fear and uncertainty, feeling overwhelmed with tasks, and financial pressures can all contribute to your level of stress. Unhealthy stress levels can lead to physical, mental, and emotional burnout. It can sneak up on you, especially when you are feeling overwhelmed, helpless, or depressed.
Ways to avoid, or manage stress can include:
Recognize the signs
Knowing what to look for is key to the effective management of stress. Symptoms may include headaches, weight fluctuation, fatigue, muscle tension, sleeping problems, and a lowered immune function.
Just say no
Keep ‘no' in your vocabulary. When other family members request your energy or attention and you either can't give it, or don't want to give it, say no. This will avoid miscommunication, guilt, and resentment while not contributing to your stress levels. Be honest. Most times, family and friends will understand.
Take time for yourself. Fill it with whatever you want to do, whether it's visiting someone, going for a walk, watching a movie, reading, being with animals, shopping, or even doing absolutely nothing.
Counselor Jessica Drake, MAPPC states, “Self-care is really important so, anything the person enjoyed doing before they were a caregiver – taking time to engage in what they enjoyed so they can kind of have a period of de-stressing and releasing all the tension and turmoil of being a caregiver. That can depend on the person, so that can be many different things.”
Take care of yourself
Nutrition, fluids, exercise, and sleep can help to ward off burnout.
Relaxation and mindfulness
Meditation, calming music, and deep breathing have all been shown to help lower stress levels.
Being a caregiver for a care patient can put you on an emotional roller coaster ride. There will be ups and downs that you will have to adjust to while helping the patient make the best decisions for their health and well being. Having a support system in place for yourself is critical in managing the emotional ups and downs you will feel.
In her experience, Dee Braun shares her emotional struggles.
“You feel protectiveness, hopelessness, anger, annoyance. Of course, you try to hold your tongue because this person is battling a life-threatening illness and that can lead to resentment, shortened temper, you feel alone, nobody else understands, you feel you can't express yourself because you can't put anything else on the cancer patient – they've got enough to deal with. You're physically exhausted. You're mentally exhausted. You're emotionally exhausted and then that's just dealing with the patient. That doesn't include dealing with their family and their friends. So, and that also doesn't include dealing with the medical profession so you really – it's like a war zone sometimes, on several fronts and it just – is it's very difficult to describe to someone who hasn't been in that position. You really feel like you're the lifeline for the cancer patient and the cancer patient typically has a team – they have a family, they have a team of doctors, they have you, and you have no one. So you feel you're an island that has no support, and that nobody understands.”
Counselor Jessica Eisenbarth, MAPPC shares why caregivers tend not to reach out, and what they should:
“Reaching out to the community and looking for that support – sometimes you have to look for it – it won't generally just show up on your doorstep – you have to be willing to ask for help, and sometimes with caregivers – they tend to not want to reach out and ask for help from somebody else, but that's one of the things that they have to do. We have to lean on others, and especially when we are the primary caregiver for someone who is very, very ill, that's a prime time where we need somebody who we can lean on, at least emotionally, and be able to talk, at the very least because if we don't' we just become so repressed and that emotion and that trauma that we're going through have to come out in some way or somehow, and it can come out in unhealthy ways and it can cause us to become sick or ill or repressed. And so, I think reaching out is something that we can try to do as caregivers even though – the caregiver – that role, a lot of people in that role don't want to reach out because they don't want to be a burden and I think it's just something we have to change that paradigm of what a caregiver needs, or what our view is of it. I think reaching out is definitely needed.”
Some ways a caregiver can help themselves cope with their emotional well being include:
Caregiver support groups
There are many reasons it is a good idea to join a support group. Support groups for caregivers allow people to share their experiences and feelings. Sometimes there are things that are difficult to share with family and friends which can create a sense of loneliness. Having a support group you can share with can give a caregiver a sense of belonging and help them feel like they are being understood. This can help relieve stress and help you cope in a healthy way. Find a group that resonates with your particular situation, your experiences, and how you are feeling. The more comfortable you are sharing, the better support you will receive from your peers.
List of caregiver support groups and resources
https://www.cancersupportcommunity.org/ – CancerSupportCommunity.org – Attend support groups, educational sessions, health, and wellness programs as well as find support, hope, and community. Our programs are free of charge to anyone affected by cancer, including patients, caregivers, loved ones, and children.
http://www.4thangel.org/ – 4thAngel.org / 1-866-520-3197 – Mentoring program service matches both patients and caregivers with volunteer mentors who have been through similar situations.
https://www.inspire.com/ – Inspire / 1-800-945-0381 – Online caregiver community.
https://lotsahelpinghands.com/ – Lotsa Helping Hands – Resource to help caregivers organize and coordinate meals and help for family and friends.
https://news.cancerconnect.com/ – Cancer Connect – Message board for patients, advocates, caregivers, and professionals
https://www.cancercare.org/support_groups – CancerCare / 1-800-813-4673 and https://www.helpforcancercaregivers.org/ – Help for Cancer Caregivers – More support lists including online, telephone, and face-to-face support.
Seeking professional therapy
Sometimes it is necessary to seek out professional care when stepping into the caregiver role. As Felipe in Hope for Breast Cancer says, reach out. Don't hesitate to take the step to getting the professional help you may need to manage the many stresses and pressures associated with being a cancer patient caregiver.
As with patients, spiritual well-being can be a cornerstone in a caregiver's health and ability to cope. Some ways of creating spiritual well being include:
Attending church or a spiritual community
Allowing yourself time to attend church or your spiritual community activities can help you stay connected with your beliefs and your spiritual community. It can also be a source for community support.
Prayer and/or meditation
Studies show that prayer and/or meditation can affect physical change – quite literally. Take time daily for prayer and/or meditation practice.
Finding support (for you!)
“Caregiving often calls us to lean into love we didn’t know possible.”
― Tia Walker, from The Inspired Caregiver: Finding Joy While Caring for Those You Love
The earlier you ask for help, the better. Getting other family members and friends involved early can go far in allowing you to plan your time as effectively as possible.
Know your limitations. Asking others for help.
Some ways a caregiver can recruit assistance in the patient's care include:
Making a list of friends and family
Sit with the patient and make a list of friends and family who may be able to offer assistance. Don’t forget people in different areas of the patient's life including people at work, school, church, or other areas of the community in which they are active.
Ask family and friends where they may be able to assist. Even if you don't use their help, it is good to know they are there. In most cases, people do want to help!
Be sure to be as specific as possible when requesting help. Do you need them to prepare a meal? Run an errand? Be at an appointment? Help with transportation? Help with paperwork? Spend time with the patient? Help with research? The more specific you are about your needs, the better chance you have of someone stepping in to help out.
Sometimes, it can be difficult to balance your caregiver duties with your other life responsibilities. Being a caregiver can take up a lot of time and can break up your day in ways that can disrupt your regular schedule. This can lead to feelings of distraction, anxiety, and being overwhelmed. These feelings can spread through all areas of your life.
Balancing work and caregiving can be a challenge, but it’s not impossible. Some ways you may be able to better deal with both roles include:
Scheduling patient appointments during lunchtimes or breaks
Doing this can help you keep your regular work hours, but it can also contribute to feeling overwhelmed as it takes away time you may need for yourself, so be careful.
Trade shifts with coworkers
When it makes sense, switching shifts with flexible coworkers can go a long way in organizing and balancing your time.
Discuss your work options with management
Can you work from home sometimes? Do they offer flex-time? Can you work at different hours, if necessary? Many companies are more than happy to help you make it work as it's easier to do this than to find someone else to fill your shift.
Caregiver medical leave
See if your company offers medical leave for caregivers. In the U.S., this falls under the Family Medical Leave Act (FMLA).
Once your family members know you have taken on the role of cancer patient-caregiver they will know that your time and energy will be split between family responsibilities and your caregiving role. One way to manage the balance is to see your current family life responsibilities as a team effort. Delegating home and family responsibilities between family members can go a long way in alleviating the pressure a caregiver can feel trying to be all things to all people.
- Cancer Support Community
- NCI Support for Caregivers of Cancer Patients
- American Cancer Society Caregivers and Family
- ACS: When Someone You Know Has Cancer
- Cancer.net: Supporting a Friend Who Has Cancer
- Cancer Research UK: How to support someone with cancer
- Caregiver's Library
- Caregiver Action Network
- Savor Health: Nutritional Support for Cancer Patients
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