Caring for the cancer caregiver

When caring for others we are naturally drawn to a place of selflessness and altruism, yet it’s in this place we often don’t acknowledge our very being, so how can we find a voice for our experiences when perhaps we have never even looked for words to express them? 

The unspeakable is so very often cancer, but while a cure is still somewhat on the distant horizon, survival rates overall have greatly improved. However, this sometimes means sufferers particularly where the disease has metastasised could endure a decade or more of repeated treatments, chemotherapy, radiation and possibly surgery, intertwined with periods of remission resulting in a tantalising normality. 

For the sufferer there is no doubt as to the pain and anguish this brings and much has been written about the trauma endured by the incredibly brave people who have been affected by this disease in its various guises, but what of the those touched in another way, as caregivers, often waiting in silence and watching powerlessly as a loved one; possibly a child, sibling, parent, spouse or partner, endure the trials of these treatments.

Time and time again, year after year, suffers can become ravaged not just by the disease, but by the very cost of survival itself which might include temporary hair loss, memory problems, the risk of heart damage and even loss of normal physical dexterity which can make the sufferer feel clumsy and awkward, impacting self-esteem by making even simple normal tasks like doing up buttons at times feel like a challenge. 

Often this can feel like a form of torture not just to the sufferer, but for the carer who witnesses it also, yet what right do they have to complain, to feel sad, or to even comment on the experience? However, experiencing extreme emotional, physical or sometimes life-threatening traumas like these can result in feelings of anxiety, which may eventually interfere with daily life. Resulting in both sufferers and caregivers possibly experiencing one or more of the following symptoms: 

• Nightmares and or strange unsettling dreams 
• Avoidance of places, events such as hospital appointments and even people that might remind them of treatment.
• Feelings of hopelessness
• Trouble sleeping or concentrating
• Difficulty feeling or understanding emotions
• Apparently unexplained fear, irritability, or anger
• Loss of interest in activities and even relationships that used to be enjoyable

These symptoms can be triggered in both the sufferer and the caregiver by key life events, which typically include the initial cancer diagnosis or the subsequent diagnosis of advanced cancer, repeated treatments, lengthy hospital stays or anticipating and witnessing repeated crucial test results. 

While the fight against cancer cannot be compared to the unthinkable and unspeakable horrors witnessed by those in our armed forces fighting in war-torn countries, for most, what they witness as caregivers can bear striking similarities in a mild way to that of veterans returning from active duty suffering from Post-Traumatic Stress Disorder (PTSD). An anxiety disorder, that normally develops in reaction to physical injury or severe mental or emotional distress. 

So, what causes these sorts of stresses? Socially it may be that in addition to being a parent, spouse or main provider within the family you may also have become the main caregiver and while you may provide this role willingly it may add to the overall strain felt and can cause depression, resentment and possibly even loss of intimacy.

The lack of knowledge often attached to a new situation also can make people feel unprepared regarding treatment options and side effects, and in addition, the unknown or possibly expected progression of the disease, along with a lack of clarity regarding the available resources to help, may add to feelings of helplessness. 

Financially the caregiver can feel they should give up work or perhaps work harder to offset other costs including perhaps the loss of a partner’s income while at the same time experiencing guilty feelings regarding their capacity to cope both emotionally and practically with a new and unexpected situation. 

However, being a caregiver can reveal hidden strengths, and enrich your family life and the advent of what is usually a life-changing event can bring people closer together, however, it’s often the case, especially if the sufferer is a spouse or partner that you may, over a prolonged time start to feel loss, loneliness and possibly isolation, especially during treatment cycles. You may fear for the future and feel like the future has been stolen, dashing longed-for dreams and expectations. 

The accompanying grief and sense of loss is a relatively new phenomenon and is different not least since it involves the terminally ill or chronically diseased person, as well as the wider family and immediate caregiver for an extended period of time in place of a single death event. This prolonged grief can have serious consequences sometimes leading to depression, anxiety, guilty feelings and possibly even physical illness, even previously loving couples may find their relationships in jeopardy and vulnerable to rupture as a consequence. 

As such having a loved one live with cancer for an extended period is fast replacing the experience of sudden death which was perhaps more common two or more decades ago, in place of this, a life-threatening diagnosis if often followed by an extended period of treatments which may or may not result eventually in death as the hope of a cure draws ever closer. This means both thesufferer, caregiver and the extended family, are increasingly faced with the spectre of possible death for prolonged periods of often, unspecified duration.

If you have experienced any of these symptoms or anxieties, you likely you may feel quite alone so it’s important to seek help and advice as soon as possible here are just 10 suggestions that mightbe useful as a guide and general starting point. 

1. Give yourself time to adjust to any recent diagnosis in order to gain a sense of perspective on this new situation.

2. Be patient and try to remain flexible in your outlook and expectations, much may change during the course of treatment and outcomes are rapidly changing.

3. Keep talking, good communication is essential both for the caregiver and the Sufferer alike. 

4. Try not to prejudge treatment outcomes and retain a positive attitude, hope is very important and will likely be beneficial for you and your loved one.

5. Where possible try and share your caregiving role with family and friends, don’t feel that you have to do everything yourself. 

6. If possible and appropriate be an active participant during clinic visits this will help you better understand your loved one's diagnosis, treatment, and progress.

7. Make time for yourself to engage in whatever form of
relaxation works for you. Get adequate rest and nutrition, and take time to look after yourself, this may also mean allowing yourself private time to do simply nothing!

8. Acknowledge that you will likely be affected emotionally, physically and maybe financially by your experience, this is completely normal and to be expected.

9. Try and remain open to seeking guidance and advice from a verity of sources Including family, friends, support groups, and established websites.

10. Give yourself permission to acknowledge and feel your emotions about you and your loved one's situation, and don’t be afraid of confiding in a close friend or a qualified counsellor who can help provide insight and much-needed support.