“Caregivers are often the casualties, the hidden victims.
No one sees the sacrifices they make “
- Judith L. London
Who are caregivers?
Caregivers are people who provide daily assistance to those with chronic illnesses or disabling conditions. The patients are either hospitalised in a residential environment or at a hospital. Informal caregivers are family members or friends who offer care and support at home, while professional caregivers are paid individuals who are formally trained in taking care of people with health conditions.
How does it feel to be a caregiver?
While there are rewarding aspects to caregiving, it can be hard, tiring and exhausting both physically and emotionally. Yet, no one talks about it. In most cases, it’s not even acknowledged. When I skimmed through quora to understand how it feels like to be a caregiver, the below responses shook me.
I was unable to step out of my house, I am literally a prisoner in my own home
I feel like a soldier on the battlefield, constantly alert
I just washed loads of clothes, made 3 meals and two snacks, dressed and undressed an adult, forced them to get clean, and managed all household chores”
When viewed from a gender lens, women are expected to be endlessly self-sacrificing and constantly giving. If not, society tries to take them on a guilt ride, labelling them as selfish individuals and eliciting various negative feelings. The fear of such tags prevents women from speaking up about their feelings and seeking help. According to an Economic Times article, over 4 million Indians suffer from Dementia and 70% of the caregiving duty is upon the women. Also, a study by Samvedna Senior Care reports that 67% of the primary caregivers were women of age 56. In addition to their ageing, they were helping family members with illnesses. Further, the lack of sufficient support groups and forums, and accessibility issues make it challenging to get help. Even in the US, the shortage of caregivers is a worrisome issue. According to the Centre for Disease Control (CDC), potential family caregivers are expected to reach 4 compared to the current number 7 with the increasing number of the elderly population in the US
Caregiver Mental Health impacts
Emotional exhaustion
Caregivers feel overwhelmed due to all the time and energy involved in offering care. Especially, in cases where diseases worsen with time such as dementia, Alzheimer's, etc., the need for care keeps increasing. The state of being in constant giving leads to anger, guilt, grief, heartache and so on. Caregivers cannot show their anger by yelling or shouting because they know that they are taking care of individuals who are ill and helpless. Not being able to process all these emotions causes even more frustration. If you have a day job, it can get manifested in the form of irritability towards coworkers and resentment. Being in a constant state of exhaustion can cause forgetfulness, late attendance at work and lower productivity.
Compassion fatigue
As humans, we all have our emotional baggage. With the responsibility of caregiving, caregivers need to deal with their emotions and of others. Seeing the helplessness and difficulties their loved ones undergo can be heart-wrenching. Carrying emotions of self as well as others can be very challenging especially when you’re a sensitive individual or an empath.
Helplessness
In addition to emotional exhaustion, financial depletion can be a source of worry. Lack of self-care habits, unhealthy eating, poor diet, and no time for a social life can be due to the deep feeling of helplessness. Waking up every morning to care for the loved one, fix meals, and do chores can induce a feeling that you’re not in control of life. This feeling could be even more difficult if you had to quit your job or discontinue your education to be a full-time caregiver. According to the Centre for Disease Control (CDC), 53% of caregivers witnessed a decline in their health due to caregiving responsibilities.
Depression
Caregivers are physically drained with no time for hobbies and other pursuits. Lack of sleep or improper sleeping schedule can also impact their emotional well-being. Plus, being in a state of helplessness and experiencing emotional exhaustion with no window to process emotions can lead to feelings of depression and emptiness. According to the study, “The prevalence of psychological impact on caregivers of hospitalized patients”, 72.8% of 353 caregivers showed high rates of depression.
Manoshala is working towards providing accessible and cost-effective mental health solutions for everyone. If you’re a caregiver to your loved ones, it is hard to practise self-care and prioritise oneself, which is why we offer caregiver support to help you with tips and techniques for self-love. Book a 15-minute free pre-screening call to discuss what weighs your mind and heart.
Tips for caregivers
Educate yourself - Tantrums of a fully grown adult can at times be annoying, but educating yourself about the disease can help you empathise with the patient, helping you manage your emotions and objectivity
Hire help if possible - Although hiring a professional caregiver may not be everyones’ cup of tea due to financial constraints, hiring someone even for a few days can help you take some time off for yourself
Be organised - Taking care of someone will require you to buy medicines, schedule doctors appointments and take care of all household chores. So, instead of relying on lists on paper, use home care management software or digital tools to stay organized
Schedule self-care time - Plan specific hours of self-care time to take care of yourself: Trim your nails, get a haircut, a long bath, exercise and incorporate some quiet alone time every day to process your emotions
Reach out to support groups - Not knowing how to take care of your loved one can be frightening. Joining a support group will help you feel less alone in the journey of caregiving
Mediate - Make it a priority to meditate every single day as meditation will bring mental clarity, inner strength and calmness to handle difficult situations in caregiving
Final thoughts
Caregiving can be very rewarding. It can increase appreciation for life and give a sense of accomplishment, truly enriching our lives. At the same time, constant burnout, helplessness and depression can make caregivers feel miserable. Hence, it is essential to prioritise self-care and take a step back if you feel angry or frustrated. Observe the emotion and let it go. Leverage technological advancements by joining online support groups and plan your day with ample self-love time with digital tools. Seek social support as often as possible and seek therapy if you feel extremely overwhelmed and helpless.
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