Support for cancer caregivers

To be able to give all you can to your loved one, you need to also look after yourself.

Estimated read-time: 21 minutes

  1. Coping emotionally as a cancer caregiver
  2. Becoming a cancer caregiver
  3. The role of a cancer caregiver
  4. The rewards of cancer caregiving
  5. What are the duties of a cancer caregiver?
  6. The impact of being a cancer caregiver
  7. Being strong when you are weak
  8. Caregiver burnout
  9. Dealing with the stress felt by cancer caregivers
  10. Support for cancer caregivers
  11. Caring for a terminally ill cancer patient

Coping emotionally as a cancer caregiver

Cancer deeply affects not just the patient but equally the caregiver as you go through every step of this trauma together, the two sides of the same coin.

This joint experience will be recognized by your medical team as you are considered as a ‘unit of care’1. Both the patient and their cancer caregivers are eligible for referrals for health care support.

It is appreciated that the closer your relationship, the more your lives are invested in each other’s, the more likely you will be to live your partner’s emotional and physical experience.2

However, there are distinct differences in the experience of cancer you will have compared to that of the patient.

Obviously, the impact upon the patient is total and complete as they are the ones with the disease, suffering the side effects, the uncertainty and potential prospect of long-term side effects, even facing an untimely death. The focus will be on them and it is absolutely right that they are supported entirely through their illness.

Yet, as a primary cancer caregiver your needs are also equally important. You are managing the fears and experiences of your loved one and those of your own.3

Cancer caregivers can find themselves in intense and a difficult situation. You are experiencing the rollercoaster firsthand along with the patient yet have these extra dynamics to deal with.

There can also be a general sense from others that cancer caregivers are just the facilitator of the patient and forget that you are emotionally involved. They can then feel like they can say things to you which they wouldn’t to the patient in order to protect them.

By unwillingly becoming the filter for everyone else’s emotions, you can end up experiencing a high burden of emotional stress from not only within but also from those that surround you.

The truth is, you are the one who is there for all the upheaval, decision-making, stress, unknown and only you will experience all that happens behind closed doors during the good days and the bad.

Cancer caregivers are the ones steering the ship whilst keeping it afloat; you have all the extra burden and challenges to bear, with none of the excuses4 or recognition.

Caregivers support

How you are affected emotionally as a caregiver, depends on a number of factors. In the first instance the type, stage and prognosis of your loved one’s cancer will dictate the anxiety you will feel and the perception of suffering you are experiencing.5

Your age, the age of any children you have and the support you get will all dictate your emotional reaction as well. Furthermore, the type of treatment your partner is going through, how long it goes on for and how significant their side effects are will all feed into your levels of anxiety.

Your perception of the emotional or physical suffering or spiritual distress you see and believe your loved one is going through6 will again have a negative impact upon your own emotional reaction.

The current status of their disease will also be significant to your mental health, whether or not they are classed as cured, in remission or of having a stable disease will affect your emotional response at any point in time.

Finally, now easy the patient is to manage, their disabilities, cognitive impairment and any complex needs they present at any particular time will demand greatly upon you as a person and how able you are to cope.

The resulting heightened emotions cancer caregivers feel can swirl in your mind all day and haunt your waking nights. It is typical for caregivers to experience a mixture of confusion, anger, guilt, injustice, disbelief and sadness, along with torturing themselves with blame.7

Questions surface such as; why didn’t I spot the early signs? Am I doing enough? Are the latest treatments available? Why can’t the doctors do more? How could this have happened? Why did this happen? Why now?

This emotional assault along with the increased burden of daily practicalities and the development of any mental health disorders such as anxiety and depression, can lead to you becoming over-sensitive, hyper-protective and permanently on edge.

This can mean that you are not capable of being able to handle the suggestions of others who are trying to help, you are blind to how you are coping and you can even be simply unable to reach out for support when you need it the most.

Becoming a cancer caregiver

All of a sudden, things change. Upon diagnosis, your life and that of your loved one have changed forever, and you are now on a new path together.

Almost immediately the cogs of the cancer machine start turning, and you find yourself immersed in a new world of cancer.

You feel like you are now on a treadmill, reluctantly taking the first step of the marathon of organizing medical appointments and support, negotiating work and childcare arrangements, whilst keeping up with crucial decision-making, understanding medications and treatment plans.

Once beyond the initial shock and readjustment to daily life, you can find yourself in the no-man’s land between; hoping, wishing and desiring a cure, a remission, a tumor shrinkage, extra months, years, just more life together.

Learning how to adjust to your altered future will be the challenge you face from now on.

The role of a cancer caregiver

Everyone facing cancer, especially those with an advancing disease will need the committed support of at least one other person.8

The role of a caregiver is limitless in the tasks you undertake, relentless in the day-to-day, seemingly never-ending by nature and unforgiving in the toll it takes on you.

In addition to shouldering all the responsibilities of daily life, caregivers will also face many challenges. You will find yourself operating on many levels and juggling many tasks.

Becoming a caregiver is a role which is often thrust upon you, without training, support or knowledge and you are expected to put your life on hold and shoulder the responsibility.

The role can gradually evolve as your loved one’s disease progresses and the goalposts change.

Within families, relationships can change quite suddenly as the roles of caregiver and patient become dominant and the new norm.9 There is no telling how long you will both have the black cloud of illness over you, or even what will be the definitive outcome.

Often, the caregiving starts out as an informal commitment, as you naturally look after your loved one and there is no definite starting line.10 Yet, your role may slowly develop into gradually becoming a full-time obligation to which most of your energies are given,11 and this has implications for all aspects of your life.

Every aspect of your life will change, as a caregiver, your career and finances will be affected, your social life, your own health and mental wellbeing may all suffer as a result.12

You may even feel like you start to lose your sense of self as your roles redefine, are changed and become lost to the bigger picture.

Some willingly out of love take it all on and brace themselves to shoulder the burden, others feel like they have no choice,13 becoming the primary caregiver through default.

Either way, upon becoming a caregiver you will watch your life change as much as that of your loved ones’, right before your eyes.

The rewards of cancer caregiving

To fulfil the role of a cancer caregiver can be grueling physically and mentally, especially if the person you are caring for is a particularly close family member, your spouse or your child.

One of the main rewards of cancer caregiving is that it gives you is the opportunity to live through a very bonding experience which has value for not only the patient but also yourself.14

Rewards of caregiving

The time you get to spend together is precious, and comforting both now and in the long run. There can be new heights of emotional intimacy15 discovered as you open up to each other on a new level when faced with uncertainty.

Whilst caring can be very draining, it can also be your time when you get to spend time with your partner or person close to you and can show your love for them.

Everyone who is facing a potentially life-limiting disease is vulnerable and in need of someone with whom to share their inner-most fears, suffering, pain, loss and hope.

The fact that you can be that someone for your loved one, to be there for them in their darkest hour and to be able to compassionately share the burden of this illness is wonderful for you both.

Not only can a sense of joint solace be found at this time, but there is also a body of growing research which highlights the significant health benefits of providing a supportive relationship,16 even as far as suggesting increased longevity for those who play a central role in providing emotional support for the patient.17

Regardless of the way in which this disease plays out, there will be a sense of satisfaction, bonding and personal growth which will be born out of this intensely personal journey you have shared together.

What are the duties of a cancer caregiver?

As a caregiver for your loved one with cancer, naturally you want to do the best job you can but it is not easy. It can feel like the role of a caregiver is never done.

As a cancer caregiver the duties you are routinely doing are;

  • arranging hospital visits and medical records
  • researching latest treatments, medical home visits and follow-up care
  • liaising with local cancer charities for emotional and practical support for both of yourselves
  • hosting visitors, attempting to make conversation whilst under the surface the harsh reality of what is happening is consuming you from within
  • shopping for and trying to cook nutritious meals to boost your loved one’s energy and maintenance of their weight
  • overseeing medication regimens and keeping on top of multiple repeat prescriptions and vitamin supplements
  • encouraging lifestyle changes such as stopping smoking and drinking and starting a moderate exercise plan or sticking to physiotherapist advised exercises
  • giving massages, running baths, doing anything which might relieve their stress
  • arranging complementary therapies and counselling for your loved one and even yourself if you can find the time
  • washing bedsheets, clothes and maintaining their personal care
  • changing dressings, administering injections, monitoring their temperature and keeping a clean, sanitized house
  • packing hospital bags
  • liaising with the medical team
  • arranging transport and childcare for the many hospital visits
  • communicating with friends and family latest treatment updates on a daily basis
  • having emotionally fueled family crisis talks and going to counselling in the hope of releasing tension
  • running the house
  • assuming the role your loved one played, doing the household tasks they did before they got ill and desperately trying to fill the gap in the day-to-day parenting responsibilities, they are unable to do
  • dealing with finances and filling out budget plans and many forms to ensure you get access to all the benefits and tax relief you are entitled to, all to keep your family’s head above water
  • managing the kids, keeping their lives as normal as possible and potentially having to go out to work
  • riding the rollercoaster of your own emotional distress, fear, anxiety, hope and depression alongside that of the patient and any children or close family members.

All this whilst being excruciatingly aware of the suffering your spouse is undergoing and seeing day by day the physical and mental toll the cancer and its treatment are taking on your loved one.

Then you are thinking, what else can you do?

The impact of being a cancer caregiver

The personal impact this role can have upon your whole self cannot be understated. Overloaded from all angles, the caregiver assumes the role of loving servitude, giving selflessly of their time, energy and focus, often at some personal cost.18

One new challenge comes after another as the endless series of hoops and hurdles puts you in a place far from your comfort zone. You feel under pressure to navigate all this with grace, to keep it together and cope for the sake of the patient.

You become the subject of scrutiny from well-meaning others who are quick to assess and conclude how well you are doing. The pressure is felt, the stress is constant and the burden upon you weighs heavily.

The impact upon your body, mind and soul19 cannot be understood until you have experienced the totality of devastation this disease has the potential to rain down upon your life.

Researchers acknowledge that the levels of distress experienced by the patients and their patients can often be the same.20

Stress of being a cancer caregiver

Typical responses to the stress of being a cancer caregiver are a;

  • rise in alcohol intake and tobacco use21
  • reduction in exercise
  • loss of physical strength
  • decrease in the consumption of fruit and vegetables
  • weight gain
  • increased blood pressure
  • headaches
  • fatigue
  • pain
  • sleep disturbance.22

In fact, the high levels of stress experienced in the months following a significant disruption to your life can make you more susceptible to developing a mental health disorder.23

Feelings of uncertainty, fear, hopelessness and helplessness can develop can causing a surge in anxiety and depressive disorders.24

When caregiving for a patient with advanced cancer, the mental and physical toll can result in an apathy for life, a reduction in motivation and a decreased ability to focus, make decisions, engage with others and carry out everyday tasks.

Being strong when you are weak

The pressure placed upon you to not bring down the mood or morale of the patient is palpable as others around you expect you to hold it together for the sake of the patient.

You may feel overwhelmed by emotion yet stifled by the ability to express all that you feel,25 obliged to remain strong, even positive, for the sake of others.

This expectation to remain positive at all times can make coping with the situation even harder as you feel imprisoned by the opinions of those who simply cannot understand.

Calmness and an ability to show self-control in the face of hard times doesn’t always come naturally or easily. Feelings of isolation and resentment can creep in as you are unable to have honest conversations, walking on eggshells in the fear of upsetting your loved one.26

Like a pressure cooker, any attempts to suppress these heavy emotions at the same time as coping with all the additional responsibilities you have can lead to a breaking point in your own health.

Your body is unable to sustain this pressure and if you don’t prioritize your own self-care, which is often the case with caregivers,27 invariably your mental and physical health will suffer, and a crash of some sort will loom on the horizon.

Caregiver burnout

This whole experience and its resulting enforced and medicalized, new way of life can develop into a marathon not a sprint. The unpredictable nature of cancer means that the burden of role placed upon the caregiver can last for an unpredictable length of time.

Long road of cancer caregiving

Running on adrenaline will take you surprisingly far, however, this surge of ‘doing’ can last for an unhealthily long time and it can even be hard to let go of your role of the ‘doer’ in the household even when your partner is in remission. The reality is that this adrenaline can mask a huge amount of unhealthy stress and anxiety.

Keeping going, keeping on going may be the zone you are in and this stoic mentality can take you a huge distance, helping you achieve many positive days of caring. However, ultimately, you will hit a wall and you could crash suffering from exhaustion at a time when you are needed most.

Being a caregiver can take over your life and it can start to feel like cancer is attempting to take two lives, not just one.

As the road ahead lengthens, the stark reality dawns that this stress is lingering, becoming chronic and becoming a problem for both you and the patient.

When you are in the eye of the storm it is hard to see that like everything; this too will pass. This period of trauma will be time-limited, the mental and physical torture will ease, things will change and get better, but all this will only happen with time.

Having the foresight to be able to appreciate this in the moment and support yourself through the here and now is essential, not indulgent.

Your self-care should be a priority, as maintaining your wellbeing is essential to maintaining your ability to support your loved one.

Dealing with the stress felt by cancer caregivers

How to cope with the stress of being a cancer caregiver?

It may sound highly self-involved or even bizarre under the given circumstances, but you must always save a little for yourself. If you crumble you cannot possibly be there for anyone else.

Be kind to yourself, you are doing your utmost at an extraordinarily pressurized time. There is always something that you can do to make yourself feel better.

This self-preservation will only serve to boost your love one because if they see you crumbling, their hope will fade too and the last thing you need is for them to be worried and stressed about you.

In the moment of high stress, practice deep breathing or a few moments of meditation, escape for a walk or a cry. Do anything which will release tension and give you that relaxation and space to gain some control.

Accessing caregivers support

General techniques to combat the buildup of stress are; try to eat well, supplement your diet, get any rest you can, exercise, get support from family and friends.

Talking is crucial,30 so reach out to get professional counselling, ask for support with medical tasks, educate yourself by researching and don’t neglect your own medications and appointments.31

Doing some yoga, taking a mindfulness class, teaching yourself relaxation techniques from a book or a YouTube clip can all help in maintaining your wellness.

Let your inner voice be your own supporter, don’t be too hard on yourself, resist being self-critical and challenge any negative inner-talk.

Look after your own appearance; get dressed, brush your hair; these simple actions will help you to face the day with strength and feel good about yourself. Be good to yourself, book a massage, see a friend, do something for yourself, however small.

Being conscious of maintaining your physical and mental wellbeing is a critical part of enabling you to care for your loved one to your fullest, showing you care through actions, not only words.

Support for cancer caregivers

You should also not overlook your need for support to be able to cope with the significant changes which are happening around you.

Don’t be afraid to seek support for yourself at this crucial time. It is imperative that you pace yourself, talk to trained professionals, take your friends up on all those offers of support and take the occasional break form the physical and emotional burdens.

If you find yourself in a downward spiral, seek help immediately. Counselling can help you deal with the heightened and prolonged emotional distress and your primary care physician or doctor can support you with any medication you choose to use to support your mental health.

Write down the times you struggle with, your stressors, how you feel and seek support professionally and from your friends and family.

Being strong when you are weak is no easy task, yet by simply talking to others you will allow you to access the help you need at this time.32

Keep in touch with a support forum or cancer nurse helpline as there are people out there who understand the rollercoaster, who can empathize like no one else in your inner circle, who are trained and knowledgeable about cancer, meaning you can talk to them easily about the detail of your treatment plan.

Local charities are there for practical support and many can offer help with transport, meal preparation, childcare and the burden of household chores.

Complementary therapies are often offered by hospitals, charities and privately to both the patient and their caregiver and can provide a structure of support for your own wellbeing which is and will be under a lot of pressure for the foreseeable future.

You will also have access to a specialist nurse who will be able to support your educational needs on how to manage difficult side effects such as chronic pain or fatigue.

You can also access a nutritionist to help you manage what meals to provide and a pharmacist, who can support you with complicated drug protocols.

There is a wealth of support out there; support forums, respite care, information, practical help and people who can empathize and care. You are not alone on this journey.33

Caring for a terminally ill cancer patient

Giving your family member the care that they need at the end of their life is a traumatic, challenging and complex role to fulfil.34

Your worries and stress will revolve around; making tough decisions, managing pain, working with palliative care teams, managing complex needs and the emotional distress all around.

All that you can do is your best. If every action, reaction, effort and choice is for the best interest of the patient above all, then that is all anyone could ever do under the same circumstance.

When caring for a loved one with an advancing disease, a caregiver can experience the further emotional burden of ‘pre-emptive grief’.

Pre-emptive grief

This is a strong grief reaction and a phenomenon which can also be referred to as ‘anticipatory-grief’.

Experiencing this form of grieving can be unnerving as you may feel it surface long before any signs of terminal decline. In fact, it can be provoked in reaction to; a poor prognosis, by merely the fear of not achieving a cure, the thought of any future life lost or the impact this illness is currently having upon your lifestyle and family dynamics.

Living through such ‘anticipatory grief’, contrary to what you might think, does not mean that the grief you experience after the actual death of your loved one will be any less.35 It will simply add depth to the anguish you feel in descent as you bear witness to the playing out of the end-game.

There is an expectation that the caregiver should be the pillar of support for the patient.

However, the reality may be that the caregiver as the spouse, is facing the devastation of their life through the possible impending loss of the closest person to them and therefore may not be in a position mentally to be strong enough to support the patient in all of their needs.

To have the strength to cope with all that you have to do now, and then have the reserve for all that you will have to face in the immediate thereafter, is an overwhelming prospect.

Your medical team, especially the Palliative Care team will be able to support you emotionally with the anticipation of death and what to expect long before the end is near, for example when the prognosis is poor or when treatment stops.

Being prepared for what is to come is a useful coping technique to help you through the worst. For some, anti-depressant medication can be the cast that holds you up until you are through this trauma and able to heal inside enough to be able to hold yourself up.

Connecting with people who have gone through similar situations will help you understand what may come next and how to cope. By taking such sensible and practical steps, some of your fear and anxieties will be eased.36

Researching and educating yourself in what to expect will also help you prepare yourself in order to protect against the impact upon your mental health.

It is advisable to start thinking about what support may help you through. You should consider your own wellbeing early on in your journey, so that you are strengthened for what you will face in the future, as this could be a long run.

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Recommend to others facing cancer, on support forums, social media, in person or by email. Thank you.

References

  1. Tolbert et al., E., 2018. A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: “That’s what I say. I’m a relative survivor”. Journal of Cancer Survivorship, [Online]. Volume 12, Issue 1, 134–144. Available at: https://link.springer.com/article/10.1007/s11764-017-0652-x [Accessed 20 December 2018].
  2. Schulz et al., R., 2007. Patient suffering and caregiver compassion: new opportunities for research, practice, and policy. Gerontologist, [Online]. 47(1), 4-13. Available at: https://www.ncbi.nlm.nih.gov/pubmed/17327535 [Accessed 13 December 2018].
  3. National Cancer Institute. 2014. Caring for the Caregiver. [ONLINE] Available at: https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pdf. [Accessed 20 December 2018].
  4. Frank, A., 2002. At the Will of the Body, Reflecting on Illness. 1st ed. United States of America: Mariner Books.
  5. Zeleníková et al., R., 2016. Symptoms as the Main Predictors of Caregivers’ Perception of the Suffering of Patients With Primary Malignant Brain Tumors. Cancer Nursing, [Online]. 39(2), 97–105. Available at: https://insights.ovid.com/pubmed?pmid=25881804 [Accessed 20 December 2018].
  6. Monin, Ph.D et al., J. K., 2009. Interpersonal Effects of Suffering in Older Adult Caregiving Relationships. Psychological Aging, [Online]. 24 (3), 681–695. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765123/ [Accessed 20 December 2018].
  7. Woźniak, K. et al. (2014) ‘Cancer: a family at risk’, Przeglad Menopauzalny, 13 (4), pp. 253–261. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520372/ (Accessed: 27th March 2019).
  8. Gawler, I., 2015. You Can Conquer Cancer. 3rd ed. Great Britain: Harper Thorsons.
  9. Dana-Farber Cancer Institute. 2018. The Experience of Caring for Someone with Cancer. [ONLINE] Available at: https://www.dana-farber.org/for-patients-and-families/caring-for-a-loved-one/the-experience-of-caregiving/. [Accessed 20 December 2018].
  10. Girgis, BSc. (Hons), PhD, A., 2013. Physical, Psychosocial, Relationship, and Economic Burden of Caring for People With Cancer: A Review. Journal of Oncology Practice, [Online]. 9(4), 197–202. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710169/ [Accessed 21 December 2018].
  11. Bell, R., 2016. How to Be Here: A Guide to Creating a Life Worth Living by Rob Bell. 1st ed. London, Great Britain: William Collins.
  12. Kulkarni, P. et al. (2014) ‘Stress among Care Givers: The Impact of Nursing a Relative with Cancer’, Indian Journal of Palliative Care, 20(1), pp. 31–39 [Online]. Available at: doi: 10.4103/0973-1075.125554 (Accessed: 17th October 2019).
  13. Girgis, BSc. (Hons), PhD, A., 2013. Physical, Psychosocial, Relationship, and Economic Burden of Caring for People With Cancer: A Review. Journal of Oncology Practice, [Online]. 9(4), 197–202. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710169/ [Accessed 21 December 2018].
  14. Lungevity. 2018. Role of the Caregiver. [ONLINE] Available at: https://lungevity.org/for-patients-caregivers/caregiver-resource-center/role-of-caregiver. [Accessed 20 December 2018].
  15. Van Roij, J. et al. (2019) ‘Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study’, Supportive Care in Cancer, Volume 27(Issue 4), pp. 1187–1195 [Online]. Available at: https://link.springer.com/article/10.1007/s00520-018-4437-1 (Accessed: 18th October 2019).
  16. Anderson, G., 2009. Cancer: 50 Essential Things To Do. 3rd ed. United States of America: Plume, The Penguin Group.
  17. Brown, S. L., 2003. Providing Social Support May Be More Beneficial Than Receiving It: Results From a Prospective Study of Mortality. Psychological Science, [Online]. Volume: 14 Issue: 4, 320-327. Available at: https://journals.sagepub.com/doi/full/10.1111/1467-9280.14461?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed [Accessed 21 December 2018].
  18. Brand, P. Dr., 1993. The Gift Nobody Wants. 1st ed. United States of America: Harper Collins.
  19. Bevans, M. RN, PhD, LCDR & Sternberg, E.M. MD (2012) ‘Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients’, JAMA, 307(4), pp. 398-403 [Online]. Available at: doi:10.1001/jama.2012.29 (Accessed: 17th October 2019).
  20. Kotkamp-Mothes et al., N., 2005. Coping and psychological well being in families of elderly cancer patients. Critical Reviews in Oncology/Hematology, [Online]. Volume 55, Issue 3, 213-229. Available at: https://www.sciencedirect.com/science/article/pii/S1040842805000508?via%3Dihub [Accessed 20 December 2018].
  21. Teixeira, J. R. et al. (2018) ‘The impact of coping strategies of cancer caregivers on psychophysiological outcomes: an integrative review’, Psychology Research and Behavior Management, 11, pp. 207–215. [Online]. Available at: doi: 10.2147/PRBM.S164946 (Accessed: 17th October 2019).
  22. Woźniak, K. et al. (2014) ‘Cancer: a family at risk’, Przeglad Menopauzalny, 13(4), pp. 253–261. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520372/ (Accessed: 27th March 2019).
  23. McKenzie, D., 2006. Understanding Depression. 7th ed. Poole, England: Family Doctor Publications Limited.
  24. Kotkamp-Mothes et al., N., 2005. Coping and psychological well-being in families of elderly cancer patients. Critical Reviews in Oncology/Hematology, [Online]. Volume 55, Issue 3, 213-229. Available at: https://www.sciencedirect.com/science/article/pii/S1040842805000508?via%3Dihub [Accessed 20 December 2018].
  25. Journal of Personalized Medicine, 5(4), pp. 406–439. [Online]. Available at: doi: 10.3390/jpm5040406 (Accessed: 17th October 2019).
  26. Spiegel, M.D., D. and Classen, C., Ph.D. 2000. Group Therapy for cancer Patients. 1st ed. United States of America: Basic Books.
  27. Abu Dabrh et al., A. M., 2018. Sharing is Caring: Minimizing the Disruption with Palliative Care. Cureus, [Online]. 10(3), e2321. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947928/ [Accessed 21 December 2018].
  28. Centers for Disease Control and Prevention (2018) Cancer Caregivers: Caring for Yourself, Available at: https://www.cdc.gov/cancer/survivors/caregivers/caring-for-yourself.htm (Accessed: 18th October 2019).
  29. American Lung Association. 2018. Taking Care of Yourself as a Lung Cancer Caregiver. [ONLINE] Available at: https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/family-and-friends/taking-care-of-yourself/. [Accessed 20 December 2018].
  30. Gawler, I., 2015. You Can Conquer Cancer. 3rd ed. Great Britain: Harper Thorsons.
  31. Oncology Nurse Advisor. 2012. Coping with the Stress of Caregiving. [ONLINE] Available at: https://www.oncologynurseadvisor.com/fact-sheets/coping-with-the-stress-of-caregiving/article/255410/. [Accessed 20 December 2018].
  32. Sweet, C., 2010. Change Your Life with CBT. 1st ed. Great Britain: Prentice Hall Life.
  33. Lungevity. 2018. Role of the Caregiver. [ONLINE] Available at: https://lungevity.org/for-patients-caregivers/caregiver-resource-center/role-of-caregiver. [Accessed 20 December 2018].
  34. Lama, D., 1999. The Art of Happiness. 2nd ed. Great Britain: Hodder & Stoughton Ltd.
  35. Cure. 2007. Grief Before Death. [ONLINE] Available at: https://www.curetoday.com/publications/cure/2007/fall2007/grief-before-death. [Accessed 21 December 2018].
  36. McKenzie, D., 2006. Understanding Depression. 7th ed. Poole, England: Family Doctor Publications Limited.

Bibliography

Abu Dabrh et al., A. M., 2018. Sharing is Caring: Minimizing the Disruption with Palliative Care. Cureus, [Online]. 10(3), e2321. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947928/[Accessed 21 December 2018].

American Lung Association. 2018. Taking Care of Yourself as a Lung Cancer Caregiver. [ONLINE] Available at: https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/family-and-friends/taking-care-of-yourself/. [Accessed 20 December 2018].

Anderson, G., 2009. Cancer: 50 Essential Things To Do. 3rd ed. United States of America: Plume, The Penguin Group.

Bell, R., 2016. How to Be Here: A Guide to Creating a Life Worth Living by Rob Bell. 1st ed. London, Great Britain: William Collins.

Bell, S., 1996. Stress Control. 1st ed. United States of America: SkillPath Publications.

Bevans, M. RN, PhD, LCDR & Sternberg, E.M. MD (2012) ‘Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients’, JAMA, 307(4), pp. 398-403 [Online]. Available at: doi:10.1001/jama.2012.29 (Accessed: 17th October 2019).

Bowlby, J., 1980. Loss, Sadness and Depression. 1st ed. United States of America: Basic Books Inc.

Brand, P. Dr., 1993. The Gift Nobody Wants. 1st ed. United States of America: Harper Collins.

British Columbia. 2018. Daily Care Tips and Advice. [ONLINE] Available at: https://www2.gov.bc.ca/gov/content/family-social-supports/seniors/caring-for-seniors/daily-care-tips-and-advice. [Accessed 20 December 2018].

Brown, S. L., 2003. Providing Social Support May Be More Beneficial Than Receiving It: Results From a Prospective Study of Mortality. Psychological Science, [Online]. Volume: 14 Issue: 4, 320-327. Available at: https://journals.sagepub.com/doi/full/10.1111/1467-9280.14461?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed [Accessed 21 December 2018].

Cancer Quest. 2018. Information for Caregivers. [ONLINE] Available at: https://www.cancerquest.org/patients/information-caregivers#3. [Accessed 21 December 2018].

Cano et al., A., 2009. Spouse Beliefs about Partner Chronic Pain. Journal of Pain, [Online]. 10(5), 486–492. Available at: https://www.jpain.org/article/S1526-5900(08)00860-2/fulltext [Accessed 10 December 2018].

Carter, A. & Mackereth, Dr. P.A., 2017. Aromatherapy, Massage and Relaxation in Cancer Care. 1st ed. London, UK: Jessica Kingsley Publishers.

Centers for Disease Control and Prevention (2018) Cancer Caregivers: Caring for Yourself, Available at: https://www.cdc.gov/cancer/survivors/caregivers/caring-for-yourself.htm (Accessed: 18th October 2019).

Cicchetti, D., 2010. Resilience under conditions of extreme stress: a multilevel perspective. World Psychiatry, [Online]. 9(3), 145–154. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2948722/ [Accessed 21 December 2018].

Cure. 2007. Grief Before Death. [ONLINE] Available at: https://www.curetoday.com/publications/cure/2007/fall2007/grief-before-death. [Accessed 21 December 2018].

Dana-Farber Cancer Institute. 2018. The Experience of Caring for Someone with Cancer. [ONLINE] Available at: https://www.dana-farber.org/for-patients-and-families/caring-for-a-loved-one/the-experience-of-caregiving/. [Accessed 20 December 2018].

Donaldson, R., 2013. Stoicism and the Art of Happiness. 1st ed. Great Britain: Hodder & Stoughton Ltd.

Frank, A., 2002. At the Will of the Body, Reflecting on Illness. 1st ed. United States of America: Mariner Books.

Fu, F et al., 2017. A Systematic Review of Psychosocial Interventions to Cancer Caregivers. Frontiers in Psychology, [Online]. 8, 834. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5443149/ [Accessed 7 February 2019].

Gawande, A., 2014. Being Mortal. 2nd ed. United States of America: Metropolitan Books, Henry Holt and Company, LLC.

Gawler, I., 2015. You Can Conquer Cancer. 3rd ed. Great Britain: Harper Thorsons.

Girgis, BSc. (Hons), PhD, A., 2013. Physical, Psychosocial, Relationship, and Economic Burden of Caring for People With Cancer: A Review. Journal of Oncology Practice, [Online]. 9(4), 197–202. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710169/ [Accessed 21 December 2018].

Goodhart, Dr. F. & Atkins, L., 2013. How to Feel Better. 1st ed. Great Britain: Piatkus.

Groopman, M. D., J., 1998. The Measure of Our Days. 2nd ed. United States of America: Penguin Books.

Help for Cancer Caregivers. 2018. Getting Caregiver Help. [ONLINE] Available at: https://www.helpforcancercaregivers.org/topics/practical-matters. [Accessed 21 December 2018].

Hottensen, D., 2018. Anticipatory Grief in Patients With Cancer. Clinical Journal of Oncology Nursing, [Online]. Volume 14, Issue 1, 106-107. Available at: https://cjon.ons.org/cjon/14/1/anticipatory-grief-patients-cancer [Accessed 21 December 2018].

Johnstone, M., 2008. Living With A Black Dog. 1st ed. United Kingdom: Constable & Robinson Ltd.

Kent, PhD,MS, E.E. et al. (2016) ‘Caring for Caregivers and Patients: Research and Clinical Priorities for Informal Cancer Caregiving’, Cancer, 122(13), pp. 1987–1995. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5597246/ (Accessed: 21st May 2019).

Kotkamp-Mothes et al., N., 2005. Coping and psychological well being in families of elderly cancer patients. Critical Reviews in Oncology/Hematology, [Online]. Volume 55, Issue 3, 213-229. Available at: https://www.sciencedirect.com/science/article/pii/S1040842805000508?via%3Dihub [Accessed 20 December 2018].

Kulkarni, P. et al. (2014) ‘Stress among Care Givers: The Impact of Nursing a Relative with Cancer’, Indian Journal of Palliative Care, 20(1), pp. 31–39 [Online]. Available at: doi: 10.4103/0973-1075.125554 (Accessed: 17th October 2019).

Lama, D., 1999. The Art of Happiness. 2nd ed. Great Britain: Hodder & Stoughton Ltd.

Leeson, N., 2005. Coping With Stress. 1st ed. Great Britain: Virgin Books.

Leonard, M. T., 2006. Pain affects spouses too: Personal experience with pain and catastrophizing as correlates of spouse distress. Pain, [Online]. 126(1):139–146, 126(1):139–146. Available at: https://insights.ovid.com/pubmed?pmid=16860476 [Accessed 20 December 2018].

LeSeure, P. & Chongkham-ang, S. (2015) ‘The Experience of Caregivers Living with Cancer Patients: A Systematic Review and Meta-Synthesis’, Journal of Personalized Medicine, 5(4), pp. 406–439. [Online]. Available at: doi: 10.3390/jpm5040406 (Accessed: 17th October 2019).

LeShan, Ph.D., L. (1994) Cancer As A Turning Point, 2nd edn., United States of America: A Plume Book.

Lungevity. 2018. Role of the Caregiver. [ONLINE] Available at: https://lungevity.org/for-patients-caregivers/caregiver-resource-center/role-of-caregiver. [Accessed 20 December 2018].

Mackereth, P. et al., 2014. The value of complementary therapies for carers witnessing patients’ medical procedures. Cancer Nursing Journal, [Online]. 13, 9, 32-38. Available at: https://journals.rcni.com/cancer-nursing-practice/the-value-of-complementary-therapies-for-carers-witnessing-patients-medical-procedures-cnp.13.9.32.e1127 [Accessed 20 December 2018].

McKenzie, D., 2006. Understanding Depression. 7th ed. Poole, England: Family Doctor Publications Limited.

Monin, Ph.D et al., J. K., 2009. Interpersonal Effects of Suffering in Older Adult Caregiving Relationships. Psychological Aging, [Online]. 24(3), 681–695. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765123/ [Accessed 20 December 2018].

Moorey & Greer, S., 2002. Cognitive Behaviour Therapy for People with Cancer. 2nd ed. Oxford, United Kingdom: Oxford University Press.

National Cancer Institute. 2014. Caring for the Caregiver. [ONLINE] Available at: https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pdf. [Accessed 20 December 2018].

O’Connor, D., 2006. The Healing Code. 1st ed. Ireland: Hodder Headline Ireland.

Oncology Nurse Advisor. 2012. Coping with the Stress of Caregiving. [ONLINE] Available at: https://www.oncologynurseadvisor.com/fact-sheets/coping-with-the-stress-of-caregiving/article/255410/. [Accessed 20 December 2018].

Piraino, MSc., E. et al. (2017) ‘Caring in the Information Age: Personal Online Networks to Improve Caregiver Support’, Canadian Geriatriatrics Journal, 20((2)), pp. 85–93. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5495540/ (Accessed: 21st May 2019).

Post, S. G., 2005. Altuism, happiness, and health: it’s good to be good. International Journal of Behavioral Medicine, [Online]. 12(2), 66-77. Available at: https://www.ncbi.nlm.nih.gov/pubmed/15901215 [Accessed 20 December 2018].

Schulz et al., R., 2007. Patient suffering and caregiver compassion: new opportunities for research, practice, and policy. Gerontologist, [Online]. 47(1), 4-13. Available at: https://www.ncbi.nlm.nih.gov/pubmed/17327535 [Accessed 13 December 2018].

Seligman, Ph.D., M., 1991. Learned Optimism. 1st ed. United States of America: Alfred A. Knopf.

Sherman, Dr. D. W., 2018. Reciprocal Suffering: The Need to Improve Family Caregivers’ Quality of Life through Palliative Care. Journal of Palliative Medicine, [Online]. Vol. 1, No. 4. Available at: https://www.liebertpub.com/doi/abs/10.1089/jpm.1998.1.357 [Accessed 20 December 2018].

Southwick, S. M. & Charney, D. S., 2018. Resilience. 2nd ed. United Kingdom: Cambridge University Press.

Southwick, S. M., 2005. The Psychobiology of Depression and Resilience to Stress: Implications for Prevention and Treatment. Annual Review of Clinical Psychology, [Online]. Vol. 1, 255-291. Available at: https://www.annualreviews.org/doi/full/10.1146/annurev.clinpsy.1.102803.143948?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed [Accessed 21 December 2018].

Spiegel, M.D., D. and Classen, C., Ph.D. 2000. Group Therapy for cancer Patients. 1st ed. United States of America: Basic Books.

Sweet, C., 2010. Change Your Life with CBT. 1st ed. Great Britain: Prentice Hall Life.

Teixeira, J. R. et al. (2018) ‘The impact of coping strategies of cancer caregivers on psychophysiological outcomes: an integrative review’, Psychology Research and Behavior Management, 11, pp. 207–215. [Online]. Available at: doi: 10.2147/PRBM.S164946 (Accessed: 17th October 2019).

Thomas et al., R. B., 2004. Issues and controversies in the understanding and diagnosis of compassion fatigue, vicarious traumatization, and secondary traumatic stress disorder.. International Journal of Emergency Mental Health, [Online]. 6(2), 81-92. Available at: https://www.ncbi.nlm.nih.gov/pubmed/15298079 [Accessed 20 December 2018].

Tolbert et al., E., 2018. A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: “That’s what I say. I’m a relative survivor”. Journal of Cancer Survivorship, [Online]. Volume 12, Issue 1, 134–144. Available at: https://link.springer.com/article/10.1007/s11764-017-0652-x [Accessed 20 December 2018].

Van Roij, J. et al. (2019) ‘Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study’, Supportive Care in Cancer, Volume 27(Issue 4), pp. 1187–1195 [Online]. Available at: https://link.springer.com/article/10.1007/s00520-018-4437-1 (Accessed: 18th October 2019).

Wild, B. et al. (2001) ‘Are emotions contagious? Evoked emotions while viewing emotionally expressive faces: quality, quantity, time course and gender differences’, Psychiatry Research, Volume 102(Issue 2), pp. Pages 109-124 [Online]. Available at: https://www.sciencedirect.com/science/article/pii/S0165178101002256?via%3Dihub (Accessed: 21st May 2019).

Wolf, D. A. et al. (2015) ‘Parental disability, parent care, and offspring mental health outcomes’, European Journal of Ageing, Volume 12(Issue 3), pp. pp 175–185 [Online]. Available at: https://link.springer.com/article/10.1007%2Fs10433-015-0339-y (Accessed: 21st May 2019).

Woźniak, K. et al. (2014) ‘Cancer: a family at risk’, Przeglad Menopauzalny, 13((4)), pp. 253–261. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520372/ (Accessed: 27th March 2019).

Wu et al., G., 2013. Understanding resilience. Frontiers in Behavioral Neuroscience, [Online]. 7, 10. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573269/ [Accessed 21 December 2018].

Zeleníková et al., R., 2016. Symptoms as the Main Predictors of Caregivers’ Perception of the Suffering of Patients With Primary Malignant Brain Tumors. Cancer Nursing, [Online]. 39(2), 97–105. Available at: https://insights.ovid.com/pubmed?pmid=25881804 [Accessed 20 December 2018].

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1 Comment

  1. Jishan on April 30, 2020 at 7:28 am

    Very Lovely Article . thanks for sharing . Lyricskiss

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