The carer’s sacrifice – a note to my husband…….. my primary carer

My loving husband, although you try to hide it- I see you behind your carer’s cloak.

I see the sadness in your eyes, I sense the fractures in your warm heart, and I can hear the weariness in your voice as we travel together through yet another month of my bowel cancer recovery. I marvel as you tenuously balance the daily demands of being a carer, a husband, a dad, an employee and often the household manager. I watch on helplessly as your emotional strain transforms into new physical symptoms. Your new ‘normal’ includes the management of your own pains and twinges, lack of sleep, and on-going fatigue.

Despite what I can only imagine as an unpleasant ‘ground hog day’- each day you get up and you bring your best. You have held the family fort while I recover. You care for me and our two little men, you continue to manage a career to secure our family’s future, and you give your all at your own expense.

Every day you require a different skill set. By day you’re an employee working your backside off. By afternoon/night/weekend I might need you to be my nurse, my voice of reason, or my psychologist. One week you may need to tackle the lion’s share of the cleaning, the overnight toddler wake-ups, the cooking and general household duties. Another week you might need to manage the play dates, chauffer duties, and children’s activities. Each day you are also a dad and a husband. You manage to pull this mission impossible together, but I know it is not without great personal sacrifice. I can see that cancer is a disease that affects not only the person with the diagnosis, but also the entire family unit.

Throughout my recovery, you have handed me every morsel of fuel that was left in your tank. Like an unrelenting marathon, you have needed more physical and emotional stamina than you even knew that you had. But unlike other endurance events that you have conquered- you have had no planning, no exciting build-up, no training, no nutritional preparation, no map, and the entrance fee for this race has been extremely costly. Certainly neither of us knew that we had signed up for this life lesson, when we met over 10 years ago.

Together, on our best days, we are optimistic about my longevity. We are grateful for the microscope which has been put on our life and allowed us to see all of the wonderful elements that we share. We express gratitude for our ‘shake-up’, which is best viewed as an opportunity to take control and steer ourselves into a future of no regrets. On our tough days (usually preceded by poor sleep and lack of respite) we both experience frustration and anger. We are human.

Through our fatigue, our positive outlook on life can slip. We see our situation through the ‘life just isn’t fair’ lens. We are regularly reminded through trial that our family unit is fragile, and minor setbacks or even ‘normal’ life stressors can cause us to spiral into worry and despair. This is what happens to a family unit under strain- there is little capacity for any ‘deviation from the mean’.

Seven months into my recovery, I am feeling physically and emotionally stronger with greater resilience. My symptoms are more easily controlled, and our boys are becoming more independent as time goes on. I love seeing you finally have snippets of time to tend to your own needs and pursuits.

Although sometimes your long overdue planned ‘me time’ is cut short when I have to call you home early, or you willingly cancel a well-deserved outing because of my illness. On those days my symptoms – best described as ‘severe gastro’ have taken hold causing me to become extremely fatigued, light headed and nauseous. Heartbreakingly in those moments it is difficult for me to care for myself, never mind care for two little men.

How you have managed to stay sane (alive) and function so well in your many roles, especially as a dedicated father- I will never know. I have told you that I can only imagine the burden that you carry, and I am always grateful that I have been the one ‘in the sick bed’ (and not you). It would break my heart to watch someone that I love so dearly travel through the darkness of a cancer diagnosis and lengthy recovery.

You try so hard to mask your grief, your fatigue and understandable frustration with our challenges at this time. But I see you, behind your carer’s cloak. I know that you wear your cloak to achieve all that you do in your day, and also to protect you from the pain that cancer has brought into our family. You are our superhero – saying thank-you will never be quite enough.

Australian Carers

Carers come in all shapes, sizes and ages. Taking on the carer role for a loved one is never easy. It can be emotionally draining, physically taxing, and lonely. Carer isolation is common, as carers are often required to withdraw from their usual social and community engagements while they care for their loved one. In the Australian health care system, carers are our unsung heroes. They support many members of our community who may otherwise require hospital or residential care.

Sometimes a person will choose to become a carer, and other times a carer will take on their new role through necessity. A person requiring help in the home may need assistance with one or many tasks including domestic chores, transport, bill paying, cooking, showering and even walking. Some carers are ‘live in’, and others visit regularly to provide the required support. Amazingly, Australia has over 2.7 million carers (12 % of the population) (Carers Australia, 2019).

Caring for the carer

Like most healthcare professionals, I know carer’s strain well. I’ve seen it in the emergency department, at the hospital bedside and in a person’s own home. To see carer’s strain play out in my own life, in my own home, has been very traumatic. It is difficult to describe the simultaneous feelings of guilt, the unrelenting fear of “will we ever have our life back?”, and the feeling of hopelessness while being the cause of the carer’s strain.

Chances are that you, or someone that you know is a carer (you might just not know it). It may be the grandmother at work who is fostering her grandchildren, it may be your neighbour who supports his frail mother each day so that she can stay in her own home, it might be your daughter’s friend at school who ensures that her mum has her daily medication to control her mental health condition, or it might be your colleague caring for his wife with cancer.

The carer’s physical and emotional health, their other responsibilities, the duration of ‘giving’ and financial situation will all contribute to their ability to function in their carer role. You might have overheard or even been a part of the conversations between concerned friends or relatives. “I just don’t know how to help, I wish we could help in some way”. While each carer will need a different support system, in my experience all carers can benefit from sharing the carer load.

Sharing the load might be achieved by:

• Asking the carer to write a list of tasks that they feel can be delegated. Discuss a strategy with other friends who are eager to help (group messenger chat is great for this).
• Delivering a home cooked meal/daycare snacks (remember to ask about food intolerances or allergies).
• Offering to provide transport to appointments.
• Helping with childcare if you know the family well (as our children were very young when I was diagnosed, they would not easily go to people who they did not know. I asked our son’s daycare for a list of staff who would be interested in private babysitting. We were able to organise additional care in the home with carers that our boys loved and already knew well).
• Helping with the gardening or walking the dog.
• Providing respite- offer to wait in the home while the carer takes some time-out (self-care) for themselves. Self-care might involve the carer visiting a friend, talking to a psychologist, attending a support group, doing some regular exercise or having a nap. Both the carer and the person who is being supported will benefit from the recharge.
• Remind the carer that it is vital that they look after their own health. Often carer’s will want to put their own needs last, however the reality is that without a well and optimally functioning carer- the ‘wheels fall off’ very quickly. Instead of gifting flowers consider gifting a service (a meal, a dog walk, mow the lawn, etc).

A message to Carers

From those of us who need your help in the home, it will almost be impossible for us to show the magnitude of our thanks or gratitude. We see your commitment to us and the sacrifices that you have made. We are often aware that without the care that you provide, it would be very difficult or even impossible for us to remain at home while we recover or manage our illness in the community.

We also need you to know that it is ok to ask for, and accept help. There is no ‘toughest and most independent carer’ award. In fact the sole operator carers who are unable to or are unwilling to take a break are more likely to suffer from poor health which then impacts on their ability to perform their carer role.

Community Supports

If you are like me and under the age of 65 years with a ‘temporary condition’, there is very limited (if any) government funded home support available. Most home domestic help, or home childcare assistance will need to be privately funded. There are some wonderful cancer charities (see below for contact details) who may be able to assist you with short-term assistance, depending on your cancer type and your geographical location.

Some families with childcare aged children may be eligible for the short-term government funded, additional child care subsidy. This would allow you to access additional funded childcare days for your child (usually a maximum of 13 weeks). Contact your local Centrelink office to discuss your eligibility and application advice.

In general, a carer can only access government funded respite assistance if they have been performing the carer role for more than 6 months. However Carer’s Australia is an excellent national organisation and will be able to put you in to contact with a local support service to discuss your options.

A word of advice when phoning government organisations to seek support. Try to phone on a day when you feel like you ‘have the energy’, have your list of questions written down, and be prepared to be placed on hold or be re-directed a number of times until you get the answers to your questions.

If you have not been able to access the support that you require, ask your GP to refer you to a local social worker who should have a current list of organisations (private and government) who have funding available for your care needs.

I can’t emphasise this enough- whoever they may be, now is the time to call in your village. If you don’t have a village ready in waiting you are likely to need to outsource. Navigating your cancer, optimising your recovery, your partner successfully holding down their job, and raising small children – is not possible without adequate support.

The link between the carer and the health professionals

Medical professionals play a pivotal role in supporting the well-being of the carer, and therefore the patient. A helpful GP can support a home care unit by:-

• Encouraging the carer to have routine health check-ups as required
• Encouraging counselling, carer group or psychology support as indicated
• Discussing appropriate respite options or referring the carer to the appropriate organisations (State Carer Centre, community social worker) to obtain advice and support.

Finally one of my favourite messages- Remember to always be kind…………. someone may be facing a battle that you know nothing about.

Helpful Resources

Carer Contacts: Carers Australia Carers Queensland

Cancer Charities: Mummy’s Wish Young Pink Sisters

General Cancer Contacts: Australian Cancer Council

Child Care Assistance: Additional Child Care Subsidy

 

 

Walking in a patient’s shoes, from the nurse’s perspective has been a hugely humbling and enlightening experience. Before I became a patient with my recent bowel cancer diagnosis, I would have described myself as an ‘empathetic caregiver’. Over the years I have had plenty of experience working in some of London’s busiest trauma centres. I have cared for many families and their loved one who is not expected to survive the night. Multiple cups of tea have been had with retirees who are processing their terminal diagnosis, and like many nurses I have supported an array of patients after they have been delivered ‘bad news’ of all varieties.

When I reflect on the last 7 months I can see that I have gained more insight and admiration for the art of caring . More than I have learned during 18 or so years of nursing, and several post graduate qualifications. While I wouldn’t want another ‘training program’ like this, I am incredibly grateful for the new clarity and compassion that I have developed through my own patient experience. The two primary messages that I want to share today are 1) a bowel cancer patient is not “too young” for the condition, and 2) the benefits of empathetic care.

It’s 11 am on the day before my bowel cancer surgery and I am waiting in the hospital foyer to be admitted to the ward. The wardsperson calls out my name. I look up and I think to myself that he must have the wrong person. He’s pushing a wheelchair. I consider in my current able state- ‘I’m guessing they don’t usually see people my age coming in for this type of surgery’.

By 3pm, I’m visited by the third health professional who comments to me that I am “very young” or “too young” to have bowel cancer, and the “younger ones” having this procedure usually have a type of inflammatory bowel disease. The inference was that it is rare for people of my age to have bowel cancer. By now I had developed the retort- “I’m just special, I guess”.

My husband is sitting with me, watching and listening. I can see from his facial expressions and body language that he is starting to become increasingly worried about me just getting through the surgery, not to mention my prognosis. He asks me if I know “what level” (how experienced) some of the staff are, who keep telling me that I am too young to have this disease. I hadn’t even started my bowel preparation by this stage! This is a timely reminder that the patient in the bed, procedure room or doctor’s office – isn’t the only person that needs to be considered, it is also the patient’s immediate support team. I count at least 5 health professionals over the next 24 hours who give me the -wow you’re young ‘look’, compassionate sigh or comment.

Too young to have bowel cancer?

In general care interactions, is there any benefit of a professional pointing out to a patient that (in their mind) they are too young to have a condition? Of course if a patient asks about the clinician’s experience of treating a case similar to theirs, then that is a different scenario. I have to admit that before I was diagnosed with bowel cancer, I didn’t know a lot about the statistics – the likelihood of someone my age developing bowel cancer, or the prognosis/death rate for my type of cancer.

Now I have been able to research the bowel cancer facts a little more and I have spoken to many other women of a similar age to me (and younger). Today I can see that from a patient’s perspective, being referred to as ‘too young’ is…. well……. unhelpful and incorrect.

Many women that I have heard from between the ages of 20 and 40 years, have repeatedly shared common themes – “my health professionals tell me that I am too young to have bowel cancer”. This can create further distress for a patient. Some patients are told that they are too young at their diagnosis, some during their hospital stay, others during their chemotherapy or radiation therapy and others well into their rehabilitation. My husband clearly articulates his frustration and says “well they are just wrong because you are here with bowel cancer, at your age”.

The connotation of  too young or a rare case, also means that there is more chance of a missed diagnosis. Sadly many younger women with advanced bowel cancer reflect on their diagnosis as being delayed because their doctor initially discounted the possibility of cancer due to their age. I have heard from a number women who were incorrectly diagnosed with food intolerances, kidney stones, and ‘women’s problems’ (just to name a few) – even with obvious bowel cancer symptoms.

I was extremely lucky to have a general practitioner who recognised the potential early symptoms of bowel cancer and organised the appropriate tests during my first appointment. A delayed diagnosis will often impact on treatment, health care outcomes and prognosis. How many lives could be saved (not to mention the improvements in quality of life), with an earlier bowel cancer diagnosis? Remember – an early diagnosis is also reliant on a patient seeking medical advice early. I wrote about being attuned to your body and seeking early medical attention in my first blog Listen when your body whispers before it yells at you.

Australian Bowel Cancer Facts

• 1 in 13 people in Australia will develop bowel cancer
• Bowel cancer is Australia’s 2^nd biggest cancer killer
• 45% of people diagnosed are women
• 15% of people who are diagnosed are under the age of 55 years

(Source: Bowel Cancer Australia)

As a patient with the disease, being told that you are “too young to have bowel cancer” can place unneeded additional fear, distress and doubt in your mind. Patients can be left wondering- “so if I’m a rare case – do you know how to treat me?….. do the same rules for bowel surgery apply to a 70 year old as they do to a 30 something year old?….. does that mean that I have a higher chance of redeveloping cancer and dying?…I planned on another 40 years of life?”. As reflected in the Bowel Cancer Australia statistics stated above, us younger bowel cancer patients don’t necessarily feel like our condition is ‘rare’.

Today’s social media platforms allow patients with similar demographics – age, diagnosis, and treatment plan to easily connect. Patient’s may feel that their case is not rare or unique as they have already established on-line connections with people in a similar situation. It may be helpful to consider- will telling this patient that they are “too young” or a “rare case”, help in this moment?

Empathy

Empathy is showing a person that you are able to understand and share their feelings. As we know, some people are better at displaying empathy than others. We all know beautiful individuals who are ‘born’ with empathy. While other’s have to cultivate it and continuously work to develop and improve the skill. In my experience, I have found great benefit in the simple act of taking just a few minutes to pause (some will say – to become present) and consider in that moment if I was this patient how would I feel, and what would I need?

You could also consider, if this patient was my partner what would I need? Some professionals may find it easier to imagine their parent, friend or child – depending on the patient’s age. Also remember that not everyone is going to want the exact care that you imagine. Although every patient will benefit from a professionals who has taken the time to ‘put themselves in the patient’s shoes’. In reality, similar advice could be applied to almost any industry – and even in our personal lives.

The patient/health professional power dynamic is overt. The patient is often feeling vulnerable, filled with fear and the future is unknown. Often we are laying in a bed in a hospital gown feeling stripped of our dignity; often unwell, uncomfortable or in pain; worried about the outcome of results of the procedure/ tests/ treatment; fearful of being unwell, nauseous, or being in pain; may have a library of stressful healthcare memories playing through our mind (if we have a chronic condition); and may be worried about our family’s wellbeing or work and finances (I have seen this often, especially from self-employed patients).

A health professional brings their skills, expertise, years of experience, confidence, personality and their own current well-being to the bedside. Patients will consciously or subconsciously scan their caregivers for cues of reassurance and confidence.  They will simply want to know “am I alright?” and “do you know how to help me, here in this moment?” Of course we are all pre-programmed with our own cognitive wiring and biases from the years of experience that have led up to our illness or injury. One phrase or sentence may trigger one patient and not another. Although in general, the simple practice of empathy will give all health professionals a strong basis for providing quality  care.

Time Poor?

Understandably many health professionals feel that there isn’t enough time in their day- how can we realistically achieve this for every patient? The time investment in the practice of empathy will save you time in the future. A more relaxed and calm patient is more likely to answer questions accurately, follow instructions, and may even experience better health outcomes (Hojat, Louis, Markham, Wender, Rabinowitz, Gonnella (2011); Kim, Kaplowitz & Johnston (2004).

Grateful for empathy

I am so grateful for the many empathetic health professionals that I have come across during my patient journey. The first day after my surgery, a wonderful nurse sat with me as I cried when I couldn’t initially stand-up because of dizziness, pain and weakness. I told him that I couldn’t believe that I had failed on my ‘first test’. I was so distressed that I didn’t have the strength to stand. He looked at me and said that I was amazing, he could imagine how I must be feeling, that I could try again later when I was ready, and if I only managed a few ‘marches on the spot’ than that was enough. A few hours later when my husband arrived, I was eager to try again and I managed to stand with my fresh surgical wound, multiple drips, I.V poles, drains and catheter. I successfully had a shower with minimal help and I felt like a superhero.

Another wonderful nurse was looking after me on day 5 after my surgery. It was a particularly emotional day. I was missing my husband and my two little boys and my usual optimistic self seemed like she had been buried under the load of worry and opioids. The nurse told me that fresh air and sunshine always helped her on tough days. She suggested to me that I go for a walk, and gave me the confidence to walk the short distance to sit outside in the sunshine. She gave me directions for the shortest route, the back entrance that the staff usually use. This simple act of kindness and encouragement boosted my spirits, and reminded me……. that I was still me. Later that day I successfully completed a further two laps of the ward.

Empathy was also shown by the ‘nurse in-charge’ who visited me every shift that she was on, and showed wonderful compassion. She took the time to talk me through my ‘daily care plan’, on the night before my surgery gently broke the news that I wouldn’t be eating for five days, suggested that my son’s didn’t visit until day 3 after my surgery because of how I would be feeling but also to ‘protect’ them. She also shared her own personal health challenges that while different to mine meant that she was able to put herself in my shoes.

And most recently, it was my surgeon when he reviewed me at my 6 month check-up. He sat quietly in support, while I cried when he began to talk to me about the regular checks that I would undergo over the next 5 years. I had “perfect” blood results on my most recent tests, and I felt quite ridiculous that I was crying in his office – again. Fortunately, he sees this regularly and he was able to assure me that I was very ‘normal’, and it can be quite traumatic for a patient to return to the environment where they were given their diagnosis. He spoke to me in terms that I could relate to – “Sally, I understand. Sitting here in this room brings it all back, from when you were last here (and that was when we were planning your surgery)”.

The simple acts of empathetic care that I have been shown has transformed my patient experience. For which I will be forever grateful for.

Saying thank-you

It is so simple but in the midst of stress, sickness and pain -the words “thank-you” can escape all of us. Our health professionals are just like all humans and do like to be given a “thank-you”. They also like to be reminded when you think that they are doing a good job. Feedback always helps us to improve our care.

My experience and thoughts shared in this blog, are of course not rocket science. It is the basis of what health professionals learn at university and through watching and modelling our best mentors. Empathy in particular can sometimes be forgotten during times of workload pressure or when our own personal life is strained.There is so much truth to the old saying that “patients will always remember how you made them feel”.

Thanks for reading.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton