“Care”is the all-encompassing being inside us all,embodied as an entity with emotional, spiritual, intellectual, financial and physical dimensions… Care is mostly activated by our sense of responsibility, love, compassion for our family and loved ones, while for some as an occupation. All these emotions make that entity of “Care” take on the act of caregiving for someone with a condition or in a state where they are unable to manage by themselves – temporarily or permanently.
Let’s take a trip along with this inner being,“Care”, to witness its journey as it manifests itself as caregiving- the ups and the downs of it all. Let’s face it, caregiving, is not an easy job. But then,do think about it, neither is parenting, nor marriage,or life in general. It’s just a matter of being able to handle it as adeptly as possible and look on the brighter side to find the joys in each of those challenges. Caregiving is the same as any other situation – when we focus on the difficulties and the burden of it and all that we have given up, then that’s going to drive how we will feel. It sounds clichéd and a platitude however it’s worth trying to focus on the ups, the positives –the hope, our progress,the joy that we bring and receive. It might just be a better, happier place for us to be.Let’s not dismiss the caregiving role by saying that there is no joy, no positive that it’s a losing battle – the judgement of the journey is not by the outcome but the experience. Seek the positives and we will find them!
Of course,the “downs” can’t be dismissed summarily either. We must acknowledge them (else how would we deal with them!) and expect that sometimes it does become difficult with or without our conscious realisation. Just one fine day along the caregiving path it suddenly creeps up upon us…the exhaustion, the pain and the guilt. It is indeed a slow, insidious and unwelcome process, but it’s real and we need to be cognizant of it, expect it, be aware of it, deal with so that it is not sudden and shatters us to the point of no return.I have seen this, experienced it and have been there myself. The point of no return eventually takes its toll on our CARE, on us physically and emotionally, sometimes irreparably. It is better to recognize and deal with this phenomenon in its tracks for it not to go so far. The signs are often difficult to spot in the heat and emotions while caring for a loved one, but let’s try to make a tentative attempt… It is a recognized condition, complete with names – Caregiver Stress Syndrome or just Caregiver burnout!
This is a call-out to all family caregivers (of spouses, parents, siblings, children) and healthcare practitioners as well with the message to be aware of the signs of burnout – the state of physical, emotional and mental exhaustion that caregivers often suffer silently and sometimes even unknowingly.
Be aware of the signs. Here are is an indicative, but not completely exhaustive list to help you in that self-diagnosis. Do you find yourself going through two or more of the symptoms of caregiver burnout?
The role of being a primary caregiver has the power and capacity, if unchecked, to wipe out the energies of the CARE within us in all its dimensions – emotional, spiritual, intellectual, physical, financial, occupational, social as well as the environment within our homes. Caregiving is a very compassionate and noble endeavour, but it must not be at the expense of oneself. Taking care of one’s own self is essential for all,not just the caregiver but also has is direct impact on the well-being of the care receiver and the family at large… Strategies need to be developed to have a mechanism for addressing burnout-recognise it, understand it, admit it and take action. Besides the obvious physical and emotional toll that caregiving takes here are some additional challenges from below the surface
- Social Compulsions: India culturally, has a collective, familial social structure where it is considered natural and almost “expected” for a family member to care. The concern at not meeting expectations that caregivers have of themselves is further aggravated by fear of judgement from others. Personal sacrifices are often overlooked under the garb of “duty” and a desire to recompense for the care received at a younger age. The warrior/victim/superhero imagery tends to take over
- Role Balancing:Many people are confused when thrust into the role of caregiver. At different times there are conflicting demands on time and it can be difficult for a person to separate her role as caregiver from her roles as a spouse, lover, child, friend or other close relationships.The caregiver role often consumes so much emotional energy that it not only leads to reduced quantum of time for others but also displaced emotions. Greater frustration or feeling sapped makes one irritable and yes, unreasonable. Inability to reflect and identify the cause which needs succour making one unable to CARE in the other relationship.
- Role Confusion –Illnesses don’t make choices on the basis of age, relationship, gender or any other parameter. In the caregiver care-receiver relationship the existing familial relationships and equations change. Typically with an ageing parent this plays out in a heightened manner. The parent who was the inspiration and defined all that is right suddenly needs support. However, they are used to giving instructions, constantly correcting etc., adding to the frustration and continued empathy takes patience and continuous effort which takes a toll as well.
- Unrealistic Expectations: Many caregivers expect to have an immediate positive impact on the health and happiness of the patient and the irrational hope that their efforts will “fix” things. Other things we burden ourselves with are thinking that it’s our duty, to be always available, performance anxiety, not asking for respite, guilt at outbursts etc. We also have often unstated expectations from family, situations, even the world at large and expect the same degree of diligence from those who do help paid or unpaid. This is unrealistic and unfair for most caregivers as the healing process takes time and may not be to the extent we desire.
- Feeling of Inadequacy and Scarcity: Caregivers are often under stressed by lack of money or resources or skills to effectively plan, manage and organize the receivers care. For example, there may be the need for a gadget or even a professional service to help. Sometimes resources become a constraint,be they financial, time, easy access or just logistics. Also, the caregiver might lack the managerial wherewithal to get the support to make something happen. Another scarce commodity is time, where the ever increasing list of pending “urgent” tasks overtakes every other need. The combination of these situations can lead to a feeling of helplessness and frustration for the caregiver – “I don’t (have)/am just not good) enough!”.An honest inventory of one’s limitations is the first step to be able to address and resolve them
Many caregivers cannot recognize when they are suffering burnout and struggle with the more subliminal causes till eventually they get to the point where they cannot function effectively. They may even become physically or mentally affected themselves. That doesn’t help anyone – definitely not the care-receiver and certainly not the caregiver…In the conscious, connected and aware world of today, there is no reason or nobility to suffer this one out alone.
Support-groups, time management tools and educational content (like those by Caregiver Saathi besides others) offer the necessary support for dealing with these stressors to be able to maintain our sense of sanity and equanimity… there is more (available online or with support groups) to be able to deal with and overcome it.For the sake of the care receiver and our own, we must plan better to actually be able make a difference, to achieve the desired results of providing constant, consistent CARE.
Here are some thoughts to consider:
- We need to focus on ourselves and our needs too. There is no guilt or shame here.
- Unless we are okay, we cannot help the care receiver!
- We cannot be bitter or unsatisfied. It just won’t work.
- No brownie points there till we do what we do happily without begrudging it.
These are all pointers we must imbibe to be better equipped to be happy. Caregiving requires acknowledgement from the care receiver, family and the caregiver requires their support too. It is not easy, it is sometimes thankless and unacknowledged – Accept it and move on. It is so.
We can find hope in the midst of all the demands of caregiving by believing that tomorrow will be better. We will explore the means to find JOY in CARE together in a subsequent piece
About The Author
“Hi, my name is Mona Madan and I am a citizen of this world! As Jiddu Krishnamurti has put it:
When you call yourself an Indian or a Muslim or a Christian or a European or anything else, you are being violent. Do you see why it is violent? Because you are separating yourself from the rest of mankind. When you separate yourself by belief, by nationality, by tradition, it breeds violence. So a man seeking to understand violence does not belong to any country, to any religion, to any political party or partial system; he is concerned with the total understanding of mankind.
I very firmly believe in this and do not like to classify or curtail myself… I believe that all that the world is experiencing now is because we end up making such distinctions and differentiations instead of just being human! Compassion, I believe is the only human quality that we can and must contribute to the world today. All that we have done so far is to take advantage. Now is the time to give, now is the era of compassion – for us to do away with these attitudes of segregation and to heal all that we have ravaged!
I am an architect by training and have practised it for more than 20 years. I have now come to a health-related speed bump I feel it is time for me to contribute in another way. Writing and researching is now my chosen path…”