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Caring for the Caregiver

We all have seen those posts on social media that pop up every so often.  Proud to care for my parents who cared for me so much when I was young.  Parenting my child with autism is a privilege and a joy.  Caring for my spouse who is recovering from a hip replacement, while juggling a demanding job and 2 toddlers is my commitment of love towards him.

Of course, these sentiments are noble, admirable and most definitely coming from a strong sense of loyalty and commitment towards their loved ones.

 

However, what happens behind the scenes?  Do people feel exhausted at times?  Do people feel powerless, exasperated and perhaps even irritated at the constant demands on their time and attention?

And the real answer, raw and jarring as it may seem, is yes.

It is important for you, the caregiver who does everything possible to make his elderly parents comfortable, or to deal with the frequent meltdowns of his autistic child while juggling a career and a family and ferrying the child from one therapy appointment to the next, to know that it is normal to be angry, frustrated, overwhelmed and, at times, helpless and completely exhausted. 

You are normal.  There is nothing to feel guilty or ashamed about.

You do not love your parent, spouse, or child any less. 

If anything, you are putting them first, and trying your best to give them what is sometimes beyond what is humanly possible.  That is borne out of love, respect, and a loyalty which few people can ever fathom.

We are here today to remind you that going above and beyond to the point of constantly running on empty, is counter-productive, and that caring for yourself should be an integral part of the plan you put together every day/ week/ month for your loved one.  Burnout is a very real thing, and you need to be mindful in order to ensure that you prevent it from happening.  And if you’re already feeling a stab of guilt at the thought of caring for yourself along with your dependent relative, let us just give you a gentle reminder of the consequences of burnout that will eventually affect the quality of care you are able to give your loved one:

  • Wrong decisions and/or decision fatigue (i.e. feeling unable to make decisions and thus delaying them indefinitely with all the consequences this may bring)
  • Impaired concentration
  • Short temper, impatience and impaired listening/ communication
  • Unknowingly taking shortcuts with care, possibly resulting in mistakes

The consequences listed above may result in serious shortcomings in the level of care you are offering, so we hope that this is enough to convince you to add self-care to the list of priorities for today.

Your loved one may require considerable support, and depending on their situation, taking care of yourself is comparable to the airplane safety protocol – secure your own oxygen mask first before assisting others.  You have to make sure that you are sufficiently nourished, rested and supported in order to continue offering the best of you to your relative.  We know that as a parent, son or daughter, you are in this for the long-haul, so it’s all about ensuring the sustainability of your own health, energy and wellbeing!

  1. Take Time Out. Me-time is not wasted time.  Even 10 minutes a day make all the difference.  Remember, we always find time for what we prioritise in life.  Those 10 minutes are not selfish minutes – they are an investment in the long-term wellbeing of your loved one who is dependent on your wellbeing.

  2.   Build a support network.  Connect with your relatives, friends and other parents of children on the spectrum.  Look for online communities, local organisations, NGOs etc.  Local Councils, Religious Organisations and support groups are always a good place to start.

  3. Learn.  Read as much as you can about your relative’s condition/ disability, emerging research etc.  It is invariably the family caregiver who knows the person best, and knowing more about what is available out there will put you in the best position possible to apply your knowledge and skills as a relative and as an authority on your loved one’s unique needs and personality. Keep in mind that the most popular practices are not necessarily the best or only solutions for your relative. There are also many practices which are not evidence-based or researched enough yet; so it is important to be mindful of the sources you use for your research. It is best to form good working relationships with professionals who share the same goals for your relative who you can discuss the options with.  Having said this, seek approved/ warranted professionals with an open mind who are keen to explore what works for your family’ specific situation and who are willing to discuss alternatives with you.

  4. Establish routines.  These are not only essential to your relative, but also helps you regulate yourself and your own needs. A structured routine built on consistency reduces stress all round, and makes daily activities more manageable.  The more you can pre-plan and prepare things (e.g. preparing lunches/ menus from the night before, preparing what clothes everybody is to wear, preparing bags for school, work etc.) the less stress and anxiety your family is likely to face when time is short and tempers flaring! Remember that within these routines, you should still seek to leave room for your loved one to make choices (e.g. options for how they would like to spend their free-time or options for what clothes they would like to wear). It is also important that you are not the only one following the routine.  If you are parenting a child with disability, ensure that your child is involved as much as possible in the preparation of their own lunches/bags, routine chores, etc. Choices and involvement help create a sense of autonomy and will prevent “learned helplessness”. You will thank us later…

  5. Take breaks.  Asking for help is not weak, it is humble and clever.  We all need breaks from everything.  Plan them into your calendar.  If it helps your (very) misplaced sense of guilt, see it as a break for your child/ parent/ relative from you 😊You are a major role model for your loved one – especially if we are talking about a child –  so it is healthy for them to see that breaks are a healthy and needed part of life. Model for them what it looks like to request a break and the feelings that you have which indicate to you that you need one. Although this may seem obvious to us, it is something that often needs to be explicitly taught to someone with Autism, for example.

  6. Set realistic expectations.  Accept that, like everything else in life, there will be good days and challenging ones.  Be realistic and celebrate small victories – both your relative’s as well as your own! Involve your child in the setting of expectations when possible and involve them in keeping track of their progress. Things like sticker charts to reward toileting are very effective positive reinforcers, for example.  Be more mindful when dealing with an older person or perhaps someone with dementia.  Make sure that reinforcers are age-appropriate – such as adult-themed colouring books, their favourite music etc.

  7. Practice mindfulness, yoga, sport, art or music.  Manage stress by practising a discipline that allows you to focus on the here and now.  Whatever works for you – but mindfulness, yoga, a form of sport, playing a musical instrument or some form of artistic expression are all great examples of combining some me-time with mindfulness.  Super win!

  8. Get help.  Share responsibilities with your partner, family members, friends and professional care-givers.  You can’t carry all the load alone…Make sure that your relative is also actively participating in tasks according to their abilities. 

  9. Focus on your strengths.  Celebrate strengths and achievements.  We tend to minimise strengths and focus on difficulties – time yourself and for 3 minutes, think of at least one good thing that you managed to do today.  Then go on and treat yourself– a luxury chocolate?  A hand massage?  A new book? Go for it! You not only deserve it, but it will help boost your mood – which in turn gives you a renewed energy, with all the benefits this brings with it! (better decisions, more efficient and effective use of your time, more compliance from others since your communication improves… convinced yet?!)

  10. Take care of your physical health.  Sleep, eat healthily and move regularly.  Conquering that 20-minute HIIT workout lends you the discipline and self-belief to overcome all sort of other challenges!

  11. Know your rights – there are numerous government subsidies and schemes which you may avail yourself of.  From subsidies for professional home-care, to schemes which allow you to modify your home to maximise safety and independence for your loved one, make sure you are well versed in what is available and what may help you. 


Remember that you are human, and that expecting unrealistic things from yourself is counter-productive and serves only to further frustrate you through a misplaced sense of guilt that doesn’t do anyone any favours.  It also serves to instantly lower the quality of life for everyone around you – especially the very person you feel responsible for. 

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