A caregiver describes someone who provides care in an informal capacity to someone with cancer. This can cover a wide range of responsibilities from visits to the doctor to administering medications to providing emotional support. A caregiver can be a partner, parent, adult child or close friend of the person with cancer .
Being a caregiver can have a considerable impact on the psychological well-being and quality of life of a person. Caregivers may receive very little attention from healthcare providers whose primary focus is on the physical needs of the patient .
Issues facing lung cancer caregivers
Caregivers of lung cancer patients face a unique burden. Caregivers may help manage patient symptoms, such as dyspnea, pain and fatigue, cope with a patient’s psychological distress, and manage medical, physical and ambulatory care of the patient. And the expectation that caregivers are equipped with the necessary skills to deal with a multitude of different, sometimes complex tasks is an unsafe assumption to make . A lack of skill preparedness can factor into the burden and strain caregivers of lung cancer patients face .
Anxiety, depression and psychological distress are common among lung cancer caregivers. A study by Mosher et al found that, at the time of study recruitment, 46 per cent of 105 lung cancer caregivers self-reported significant anxiety or depressive symptoms .
Finances are also impacted: another study by Mosher et al reported that lung cancer proved to be a greater financial burden on families and support networks than other cancers due to ‘its high physical symptom burden and poor prognosis, resulting in expensive therapies and decrease workforce participation .’ A large US survey reported that caregivers of lung cancer patients acquired higher costs over a two-year period following diagnosis than caregivers of patients with nine other cancer types [7, qtd. in Mosher et al].
Caring for someone with lung cancer
The impact of lung cancer can be felt in the relationship between you and the person you are caring for and the in relationships with friends and family as the responsibility of providing care falls on your shoulders. From lungcancer.org, here is information to help you care for your loved one and for yourself:
Avoid information overload
Upon hearing that your loved one has been diagnosed with lung cancer, you may find yourself searching websites to learn more about the disease and treatment options. Looking at lung cancer statistics can leave you or your loved one feeling anxious or even depressed.
Remember that statistics are numbers that catalog thousands of individuals. They do not represent the specific outcome that your loved one will face. It is also important to remember that a patient’s prognosis can change over the course of treatment, especially with the approval of new treatments or by enrolling in clinical trials. Talk with your health care team about the specific prognosis for your loved one and about any questions you may have about lung cancer.
Be aware of stigma
A lung cancer diagnosis can be challenging to face because of the stigma associated with the disease. As a caregiver and advocate, you may have to overcome prejudice or bias on three different levels:
Society. Lung cancer affects people who have never been exposed to cigarette smoke or tobacco products. The public may automatically assume that a lung cancer diagnosis means the patient has a history of smoking.
Family. The pressures of caring for a loved one with lung cancer may cause some family members to inadvertently make a loved one feel guilty about a cancer diagnosis, especially if it is a result of smoking. Since cancer impacts the entire family, consider talking with an oncology social worker to work through the mix of emotions that come with being a caregiver.
Personal. A cancer diagnosis can cause a person to reflect upon past choices to identify what could have led to the diagnosis. Your loved one may already feel guilty and think the cancer is deserved. As a result, he or she might not follow the doctor’s instructions or not seek the best medical care. If you notice your loved one taking the blame for his or her lung cancer diagnosis, work with the health care team to provide appropriate support.
As a caregiver, you should prepare yourself to experience highs and lows as part of the cancer journey. Lung cancer is often referred to as the ‘invisible cancer’ because the cancer is often diagnosed at an advanced stage. Available treatment options may act as measures to reduce pain, and focus on maintaining quality of life. Therapies can also be aggressive, leaving some patients to experience severe side effects. It is also possible that the cancer may not respond to standard chemotherapy or even become resistant to drugs.
If lung cancer is caught at an early stage, surgery may be an option. As a caregiver, it can be overwhelming to care for your loved one who is in pain. You may even wonder if the treatment is really working. Talk to your health care team about managing side effects and about any questions you have regarding your loved one’s treatment.
Take care of yourself
Caring for a loved one with lung cancer can be a long road, and so it is important not to burn out early. Remember to take care of yourself as you strive to stay on top of tracking doctor’s appointments, treatment schedules, updating family and friends, as well as juggling your own life.
Seek counseling from a professional oncology social worker, delegate caregiving responsibilities to friends and loved ones, and spend some alone time to relax and recharge. Consider joining a support group. You may find it helpful talking to other caregivers who are going through a similar situation. CancerCare offers free face-to-face, telephone and online support groups led by professional oncology social workers.
Smoking and lung cancer
If your loved one is a smoker and continues to use tobacco products during and after treatment, you may feel frustrated and anxious about how it will affect the treatment results. Addiction to nicotine can be powerful and may keep your loved one from being able to quit.
In addition, smoking may also provide relief and comfort during stressful situations. If your loved one’s decision to smoke is affecting your relationship, talking to an oncology social worker may help in developing communications skills that improve your relationship. Talk to your health care team to discuss the effects of smoking during and after treatment and to learn about programs that can help your loved stop smoking.
Tips for caregivers
- Take a break and do something that you enjoy
- Know your limits; don’t be afraid to say “no” to family and friends
- Write down your thoughts and feelings
- Seek the support of a professional counselor or social worker
- Join a support group
 Information taken from lungcancer.org
Caregiver burnout is a very real concern when caring for a loved one diagnosed with cancer. It happens when a caregiver exists in a prolonged state of stress or distress. It may feel like your situation is spiralling out of control; tasks and activities that once seemed manageable are now stressful and exhausting . Your mood will also be affected—you may feel tense, angry, anxious and depressed more often than not. Physical symptoms can also manifest like sleep problems, muscle tension in the back, shoulder or neck, headaches, stomach problems, weight gain or loss, fatigue, chest pain, heart problems, hair loss, skin problems or cold or infections .
Warning signs of caregiver burnout
- Ignoring your own health problems or symptoms (including putting off seeing your own doctor)
- Eating poorly
- Overusing tobacco, alcohol or other substances
- Giving up exercise
- Losing contact with friends
- Bottling up feelings of anger and frustration
- Having angry outbursts
- Feeling resentful towards others or unreasonably annoyed by them
- Feeling anxious, depressed, sad or hopeless
- Blaming the person with cancer for the situation
- Feeling tired all the time
- Sleeping poorly
Please seek professional help from a healthcare provider if you are experiencing a few or more of these symptoms over a prolonged period of time.
 Information taken from Help for Cancer Caregivers
Supportive and palliative care
Palliative care is a type of health care for patients and families facing life-threatening illness. The services help patients achieve the best possible quality of life right up until the end of life. Palliative care is also called end-of-life, or comfort care (via virtualhospice.com).
Palliative care includes the following (via Canadian Breast Cancer Foundation) :
- Reducing the symptoms of lung cancer and the side effects of treatment
- Managing pain
- Addressing emotional, psychological and spiritual needs
- Enjoying and enhancing relationships with friends and family
- Supporting the patient in living as actively and fully as possible
- Supporting caregivers
- Preparing for the end of life
Palliative care does not necessarily end when your love one passes away. Many hospice palliative care centres offer bereavement programs for the friends and family of the patient following their death. They may need help with managing strain and stress, and an additional support system as they grieve.
Palliative care FAQs
Are palliative care and hospice the same thing? In Canada, the two terms are the same thing. Some people refer to hospices as centres in their community in comparison to a centre inside a hospital.
Who benefits from palliative care? Family, friends and the individual who has a life-threatening illness will benefit from palliative care. The end-of-life is difficult – these centres try to make it as easy on the individual and support system as possible.
What is involved in palliative care? Palliative care aims to (via npc.org.uk):
- Affirm life and regard dying as a normal process
- Provide relief from pain and other distressing symptoms
- Integrates the psychological and spiritual aspects of patient care
- Offer a support system to help patients live as actively as possible until death
- Offer a support system to help the family cope during the patient’s illness and in their own bereavement
Who provides palliative care? Who is on the palliative care team is determined by the needs of the patients and his or her family. The team often includes nurses with specialized palliative care skills, the person’s family physician; a physician specialized in palliative care, a social worker, a spiritual counsellor, and a pharmacist.
Where can people receive palliative care? People can receive palliative care (via chpca.net):
At home – Palliative care is often provided at people’s homes through home care programs. These programs provide professional nursing care a variety of other services. Other services may include volunteer services, day programs offered for the ill family member in their community, pain and symptom management teams and 24-hour emergency response teams.
Hospitals – Some hospitals have palliative care units with a palliative care team made up of health professionals who specialize in palliative care – some hospitals will set aside beds in different units of the hospital for people who are in need of palliative care.
Long-term care facilities – Palliative care services may also be offered in long-term care facilities such as nursing homes. It is sometimes necessary for residents who need more specialized palliative care services to enter a hospital. Long-term care facilities are less likely than hospitals to have specialized palliative care units
Hospices – In Canada, there are only a few residential hospices-separate buildings or apartments where palliative care is provided in a home-like setting. Some people move into hospices to receive palliative care on a 24-hour basis.
Who pays for palliative care? If you chose to receive palliative care in a hospital, it is likely to be funded by the provincial health plan. These plans usually include cost of drugs, medical supplies and equipment while the person is in the hospital.
If the patient will be using at-home palliative care services, it may be paid for by the provincial health plan as part of a home care program. These plans do not always include the cost of drugs and equipment used at home. Some plans allow only a certain number of paid hours of professional and home support services. After the hours are used up, people need to look for other ways to pay for these services.
Bereavement support is generally cost-free. It is important that people requiring palliative care and their families find out as soon as possible who pays for what and what additional financial assistance may be available.
For more information on palliative care, potential palliative care benefits and palliative care centres, click here.
 Information taken from the Canadian Virtual Hospice
 Grunfeld, Eva, et al. “Family Caregiver Burden: Results of a Longitudinal Study of Breast Cancer Patients and their Principal Caregivers.” CMAJ : Canadian Medical Association journal = journal de l’Association médicale canadienne 170.12 (2004): 1795-801. Web.
 Grant, Marcia, Virginia Sun, Rebecca Fujinami, Rupinder Sidhu, Shirley Otis-Green, Gloria Juarez, Linda Klein, and Betty Ferrell. “Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small Cell Lung Cancer.” Oncology Nursing Forum 40.4 (2013): 337-46. Serial Summons. Web. 18 May 2016.
 Mosher, Catherine E., Heather A. Jaynes, Nasser Hanna, and Jamie S. Ostroff. “Distressed Family Caregivers of Lung Cancer Patients: An Examination of Psychosocial and Practical Challenges.” Support Care Cancer 21.2 (2012): 431-37. Springer. Springer-Verlag, 14 July 2012. Web. 19 May 2016.
 Mosher, Catherine E., Victoria L. Champion, Christopher G. Azzoli, Nasser Hanna, Shadia I. Jalal, Achilles J. Fakiris, Thomas J. Birdas, Ikenna C. Okereke, Kenneth A. Kesler, Lawrence H. Einhorn, Patrick O. Monahan, and Jamie S. Ostroff. “Economic and Social Changes among Distressed Family Caregivers of Lung Cancer Patients.” Support Care Cancer Supportive Care in Cancer 21.3 (2012): 819-26. Springer Link. Web. 20 May 2016.
 Yabroff KR, Kim Y (2009) Time costs associated with informal caregiving for cancer survivors. Cancer 115: 4362–4373
 “Caring for Your Loved One with Lung Cancer.” Lungcancer.org. CancerCare, 2016. Web. 20 May 2016.
 “Caregiver Burnout.” Caregiver Burnout. Caregiver Action Network, 2016. Web. 20 May. 2016.
 “What Is Palliative Care?” What Is Palliative Care? Canadian Virtual Hospice, 2015. Web. 06 Oct. 2015.