by Gary Spencer (Special Needs Financial Planner)
Last week, on my regular bus commute to work, I bumped into a friend who I hadn’t seen for some time. While he seemed upbeat, I knew that his wife had been struggling with a chronic illness, and that they had been doing it tough for a few years. Besides holding down a job, he had been caring for his wife and three young children. What I discovered, was that he had changed jobs to ensure that he was in a low stress role with the flexibility to support and care for his wife. While I do realise that everyone's situation is unique, I was personally encouraged and inspired by this man. Despite having previously been in a high-powered, executive job, he had made the decision to move into a job that he described as boring, and which was, no doubt, well below his professional capabilities.
I often come across clients who grapple with the issues around work and being a carer. To what extent should carers work, if at all? I see people in many different situations - from young families dealing with disability to elderly people caring for their lifelong partners. There are so many factors and emotions involved. Some may, for instance, experience guilt and anxiety if they do choose to leave their loved one for part of the week. In certain cases, there may be resentment if they don’t have any sort of life apart from the one they are caring for.
As many carers know, it can be very draining caring for the physical and emotional needs of someone who has an illness or special needs. Carers find themselves with added responsibilities, which make it difficult to remain in full-time employment, and yet they face extra costs relating to care/disability. Some carers find it hard to even contemplate working outside the home, as their role as carers is already so demanding. Others would like to work, but few employers offer them the understanding and flexibility they need to continue in their role as a carer. Still others work out of financial necessity, seeing no other way to relieve their financial burdens.
It is true that, in general, carers tend to be an economically disadvantaged group in our community, with 62 percent of primary carers in the two lowest income quintiles (1). Finances present a major struggle for carers. This is where I come in. As a Special Needs Financial Planner, it is not my job to make a judgement about whether or not a carer should work. My job is to help and to guide. I try to be a sounding board, to ask the right questions, and to clarify what is really important to my clients. I also try help them explore alternatives and strategies that they may not have considered previously.
There are a lot of technical factors and specific financial factors that need to be considered. Centrelink benefits, child care and tax planning need to be looked at in detail. In the the recent federal budget, for example, there were a number changes announced around Centrelink, tax, child care and aged care. These could all be impacted by the level of work a carer does. It may be that the carer is depending on their income to support their family and the person who is unwell. Centrelink does provide benefits to reduce financial pressure. For example, the Carer Allowance is a tax-free fortnightly payment for people who are not paid caregivers. Employment doesn’t affect eligibility, as the allowance is not income or assets tested. For further details, contact Centrelink on 13 27 17 or go to www.humanservices.gov.au. These are just a few of many things to consider.
In a broader sense, my advice for carers is to consider the following 3 non-financial factors:
1. Consider YOUR OWN EMOTIONAL AND PHYSICAL WELLBEING
While it may seem impossible, as a carer, to even look at your own needs, it is absolutely vital that you do, in order to sustain this role, and to keep yourself from 'being lost' in it.
Carers have lower general wellbeing than others and are more likely to experience poor health, including an above average rating on the depression scale. Carers are also more likely to experience chronic pain or injury associated with caring. (2)
Despite the obvious need for carers to care for themselves, it can often be the case that the primary carer anxiously takes on all the responsibility for the one he/she is caring for, sacrificing everything to give that person a satisfying life - to the best of his/her abilities. In her book, “Growing Yourself Up”, Jenny Brown describes a common case where the carer begins to focus his/her life so much on the one he/she is caring for that the prime topic of conversation with friends and family become the needs of that person. Without necessarily realising it, the carer begins to lose those vital connections with his/her partner, family and friends. Then, the carer finds himself/herself isolated and resentful for the load that has fallen on his/her shoulders, and just as resentful towards others in the family who have apparently “failed” to pitch in. (3)
So, in order to prevent this scenario, taking some time to continue to nurture yourself, and your most important relationships is essential. Ideally, any work you do apart from your carers role would allow time for these relationships. I was reminded of this at a talk I went to a few months back by the former Rugby League player Luke Priddis. Luke has a son on the Autism Spectrum. His top tip for people juggling a career while supporting a child with special needs was to ensure that the relationship with his wife was as strong as possible. Commonly, the caring role of one or both parents puts enormous strain on the marriage, and I have witnessed this. In an ideal world, a couple will support each other as they both care for their child, and the strength of their relationship can lead to better outcomes for the child, even if there has to be a little less formal therapy for that child.
Further, the intensity of your role of a carer may indeed be a reason to consider some work. It may give you the opportunity for new, meaningful relationships and to shift your focus a little. It may be that a little time away from the one you are caring for is healthy for you, and for your other meaningful relationships (marriage etc…). Often, when caring for someone with a disability, for instance, you are dealing with many things out of your control. Doing something different, and being out in the community, may give you the chance to do something which you have more control over, and help you feel refreshed. In some cases, it may actually help the person you are caring for to develop new meaningful relationships with other carers, and to learn to do more things for themselves (things that they are actually capable of, but that you have been doing for them).
Even if it is not possible for the primary carer to work, I cannot underestimate the importance of respite for carers. Counselling may also be extremely helpful, and a number of sessions are available free of charge to carers. Other forms of support may come in the form of nursing and home help.
To access these services, start by contacting Carers Australia, the national body representing carers in Australia. See www.carersaustralia.com.au for more information and resources.
You can also contact the Commonwealth Respite and Carelink Centre to find out about community care services available in your local area. See www.commcarelink.health.gov.au.
2. Hold onto your own values and principles
There is no right or wrong way. If you are not sure about your values and principles, you may need to spend some time thinking about what is important - this will enable you to make decisions about your daily life which are aligned with who you really are. For instance, you may be caring for your child alongside another primary carer, so that you are able to maintain full-time employment. You wholeheartedly believe that your family comes first, but the reality is that you find that your high-powered job is not only eating away at the time you have with your family, but it is also taking you away from them when you are physically present with them. Personally, I have been through stressful work situations which have meant that I have not been mentally or emotionally present with my family for months on end. This left my wife carrying the burden of caring for our child (who has special needs) with little support, except in the financial sense. Knowing this was going against my values, I decided to make a change on the work front which would allow me to be more ‘present’ with my family and reduce the stress which was so mentally consuming. Remember your values, and make changes accordingly.
3. Consider the unique needs of the one you are caring for
This may go without saying. My observation, particularly with developmental disorders, is that the person may or may not need your care for an indefinite period of time. It may be that he/she needs more intensive care in the short term, but less care later. This is particularly important when you are dealing with a developmental disorder like autism. Time spent in the early years doing treatment has such a big impact - some would argue that this time is irreplaceable because time later can’t replace the lost opportunity in the early years. So it may be that I help you restructure your finances to allow you to take a few years out of employment, or in a less demanding job, to allow you to focus on early intervention.
One thing I have observed as a financial planner is the excessive focus on money (as a finite resource) when the thing that is really limited is time. My top tip is to manage your time in the best way you can. Whether you work or decide to reduce your work is a decision about making the best use of your time.
If you are not satisfied with the balance of caring, working, and taking time for yourself and other meaningful relationships, I urge you to be proactive and rethink your options, keeping the above factors in mind.
Next time I see my friend who I see on the bus, I think I will tell him that I admire the choices he has made. Although the job he has may not be interesting, and he may not have the financial rewards he had previously, he has freed himself up to be the best carer he can be, and to make the best use of the time that he does have.
1) Unpaid Carers: The Necessary Investment (p 4) - Carers Australia
2) CARERS AUSTRALIA (p4)
3) Brown, J (2012). Growing Yourself Up: how to bring your best to all of life's relationships: Exisle Publishing: Australia, p183 - 185.