Caregiving is a part of everyone’s journey

There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

– Rosalynn Carter, Former First Lady of the United States

Mrs. Carter founded the Rosalynn Carter Institute for Caregivers a few years after she and President Carter left the White House. She first experienced caregiving before she entered her teens when she helped look after her father who had cancer.  Sadly, the Carter Center announced just a few weeks ago that Mrs. Carter, now in her 90s, has dementia and continues to live at home in the care of her family.

Rarely does a hand go up when I ask a roomful of people if they do not fit into one of these four categories.  It is inevitable: sooner or later, caregiving will be a part of our lives. I have lived all four roles. We need to acknowledge this reality, accept it, and prepare for it. All of us – those who give and receive care – benefit when we share our caregiving stories and learn from one another.

You are not alone

Everyone feels completely alone at some point during the caregiving experience. The entire burden appears to sit on our shoulders, with no one to share it.  My first message to you is: you are not alone! Part of being a good caregiver is to learn how to get past this feeling and figure out how to get help. I’ll say more about that in a minute.  First, it will help to understand the magnitude to which caregiving permeates and impacts our community.

53 million adults are caregivers

The National Alliance for Caregiving & AARP publishes the Research Report on Caregiving, every five years, with eye-opening data. In 2020, 53 million adults, 61% of whom were women, were unpaid family caregivers. 

This number was an increase of over 20% from 2015, and is estimated to have increased at least that much since then. The average caregiver is 49 years old, though many are over 70, and 1 in 10 is a college student. About 1 in 4 cares for two or more people. Most care for a parent, spouse, or grandparent; about 6% look after an adult child.

Caregivers 75 and older typically care for someone who is also over 75.   The US Bureau of Economic Analysis estimates a 3% increase in adjusted 2020 US GDP if unpaid caregiving was taken into account.

What do caregivers do?

All caregivers help with one or more necessary daily activities. These include cooking, cleaning, driving, laundry, managing finances, shopping, and making appointments, and are known as the Instrumental Activities of Daily Living or IADLs.

About 60% of caregivers also help with self-care tasks we were taught growing up. Known as ADLs or activities of daily living, these include eating, dressing, bathing, toileting, walking, standing, or moving around.

Many manage medications, ensuring that all the right medications are taken at the right time. Some also take care of special medical and nursing needs. Half of all caregivers coordinate the medical care required from multiple professional providers. Other members of the family or community, including children are often called upon to help carry out care tasks.

Caregiving brings joy and challenges

Caring for a loved one is a special experience, filled with love, devotion, and compassion. The privilege of taking care of someone you love brings hope, faith, balance, healing strength and joy. Caregiving makes us better people. We learn time-management skills, become better organized, learn to prioritize, and develop improved self-awareness.

However, caregiving also comes with a great many challenges. A caregiver frequently takes on new roles and responsibilities and is faced with exhausting days, struggles, and worries. She or he has to deal with a range of new emotions including guilt, resentment, fear, grief, depression, embarrassment, and anger. Caregivers also deal with high levels of physical and emotional stress and burnout which invariably lead to health problems.

It’s okay to have feelings!

We invariably feel guilty about the feelings and emotions that arise as we go about our caregiving tasks day after day. Suppressing or pushing these aside leads to other feelings and actions that are not healthy.

It is important to realize that anger, resentment, and guilt are all very normal and that all caregivers experience them. We need instead to acknowledge and deal with our emotions constructively.

A woman forms a heart with her palms
Self care (image credit: Jackson David – Unsplash)

Find ways to care for yourself

Acknowledging and accepting our feelings is an essential step in taking care of ourselves as we go about our caregiving tasks. If left unaddressed, the stresses and emotional burdens adversely affect our health and well-being.

How can we tell if we are going down this path?  We should be watchful for these telltale signs: constantly worrying, feeling overwhelmed, getting irritable or angry easily, feeling sad, and getting tired often.  We might either sleep too much or not enough. We might lose or gain weight. We are no longer interested in things we enjoyed before. We might feel pain, headaches or other physical symptoms. 

If we spot any of these, we should not wait, but act – by consulting a doctor right away.

Self-care is not selfish

The first rule of self-care is self-compassion.  We need to practice compassion towards ourselves and treat ourselves the way we would treat others. Dr. Kristen Neff, an expert on the subject, says that “with self-compassion we mindfully accept that the moment is painful, and embrace ourselves with kindness and care in response, remembering that imperfection is part of the shared human experience.”

We need to let go of what we cannot control, eat healthy, sleep well, and stay active. We have to learn to pamper and reward ourselves, and carve out some time regularly to do things for ourselves; things that make us feel happy or good about ourselves.

We should learn to vent when feelings begin to build up.  Many find meditation, exercise, and music of great benefit. We should practice gratitude daily. Each of us needs to develop our own special self-care formula, learning what works best for our needs.

Build your own support network

Sometimes all we need is for someone to be there, even if they can’t solve any problems. Just knowing there is someone who cares makes all the difference.  We should begin our network with that special friend or two, whom we can count on to talk to.

Who else could we add to our network?  We should seek others who resonate with us, whose company and counsel are positive and additive, and not a burden.  We should seek and maintain regular social connections.

Support groups with others who have similar experiences can be valuable – they help with shared tips, experiences, and so on.  Most important, we have to let go of what we cannot control, learn to be assertive for ourselves, and not feel shy to reach out and ask for help as and when we needed it.  We should find out about all the resources and support that professional, community and local government organizations can provide.

Let’s help one another become better, conscious caregivers. The knowledge, experience, and wisdom we share will have ripple effects. No one is an island. Whether we realize it or not, we leave an imprint on the lives we touch.  Caregivers, we are not alone!

Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within...