Carer’s Strain – Behind the Carer’s Cloak

May 21, 2019

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 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.