Caring for the caregiver

My Story, Apr '14
Shikha Aleya, a founder member of Caregivers Link, writes about informal caregivers and care giving, arguably the most intimate aspect of health care and probably the least appreciated

The room fills up fast though many people participating in the meeting walk slowly, carefully, with the help of mobility aids and the encouragement of family and friends. Some walk alone. There are smiles of recognition and greeting amongst those who have been here before. There is questioning and apprehension on some faces. There is sadness in many, just barely below the surface and that sadness will suddenly hijack the owner, embarrassing and scaring them in an outpouring of tears, a burst of hyper-ventilation. Then smiling faces, concerned, understanding faces, will emerge like many suns from behind the one cloud, to hold, to help, to cajole the hijacked one back into coping. Sometimes this works, to some degree, and sometimes it doesn't.

This combination of smiles, sadness and coping is a familiar thing across rooms, across people talking care.

Not the simple “take-care-I-care-about-you” care but the “did-you-have-your-pills-where-do-we-hire-a-hospital-bed-maybe-we-need-a-24-hour-home-care-nurse-the-psychiatrist-has-recommended-exercise-and-social-interactions” type of care.

This type of care is different. Yet every, or at least every other, person or family is familiar with informal care giving, has experienced it, or witnessed the experience of it. And this is why Caregivers Link came into being: To address some of the many problems faced by those parents, partners, spouses, children, siblings and sometimes friends and extended family who take on the role of caregiver to someone at home who needs help to lead their daily life, for long and sometimes life-long periods of time. This may be due to chronic or terminal illness, disability or multiple other health issues.

In real rooms and virtual (Internet-based events), Janet, Devashri and I have been privileged to interact and meet with some extraordinary people, talking care. In every such gathering, one established accepted fact, despite the sadness, is the importance of such rooms – spaces that allow care talk. One would imagine that for something as common as care, there are enough common spaces to talk about care. Unbelievably, there are not so. Talking care is often also hijacked by a combination of things, before it can even begin.

A caregivers meeting begins with a simple sketching exercise to
clear and calm the mind. Photo credit: Caregivers Link

Nobody to talk to, no time to talk to anyone, don't know what to say, don't know what to ask, overwhelming multiple things to do, the felt need for various reasons to keep mental or physical ill health and disability a secret, stigma, depression, ignorance, fear, anxiety, hopelessness.

Caregivers Link conducted an online group discussion with a small group of caregivers in the week of September 12-19, 2011. The participants were all caregivers with recent or long-term care giving experience across diverse circumstances. We focused on the subjects the participants wanted to talk about, so prior to the discussion we asked them to choose topics of their interest. They chose: 

• Caregiver agencies and care attendants
• Dealing with relatives and friends
• Products and pricing of things required by care-receivers and caregivers like oxygen, adult diapers and similar products and accessories
• Caring for the caregiver, the problem of tiredness that a caregiver faces
• Doctors and nurses or medical assistants who can do home visits

One participant described her care giving experience as “a hassle, a hardship” but, also, equally one of “inner growing”.

Caring for the caregiver was the issue that probably weighed the most on the minds of the participants. Loss of control of one’s life, unreasonable caring hours and responsibilities, unprecedented tasks, loss of social and professional life, emotional burden to bear, growing impatience as a caregiver, and development of physical illnesses and depression among caregivers were some of the issues brought up.

The strategies adopted by the participants included not compromising on hiring care attendants, delegating responsibilities, continuing to pursue one’s own goals and interests, and most interestingly, keeping the humour alive in the care giving relationship – finding humour as a caregiver and helping the care-receiver laugh!

A participant shared: “A little time spent with my mother singing made her happier than spending far more time on accomplishing a task such as giving her a bath.” Spending time singing, playing board games with the care-receiver or doing shared activities that brought joy to all involved helped a lot because the quality of the engagement was the important factor.

On the issue of caregiver agencies and care attendants, caste and conservatism were mentioned as deterrents for keeping live-in care attendants, particularly in the case of old parents and parents-in-law being assisted by them. Reason, ploy, and firm decisiveness were used to deal with such situations. A participant warned against caregiver agencies that asked for an advance but did not ultimately send a care attendant, or sent poorly trained attendants. One strategy shared was to hire regular domestic staff and train them in care giving.

Family attitudes, especially dealing with conservatism, ignorance and unsolicited suggestions from relatives and friends, were a major challenge in the process of care giving. But the participants felt that since extended family relationships and friends were two strong sources of social support, the caregiver must involve them in every possible way and patiently work on attitudes. If the caregiver had a ward who might need family support and care in the future, this approach would become all the more necessary.

Other issues touched upon in the group discussion included sexuality of young people with disabilities, financial burden involved in care giving and provisions in the Income Tax Act that allowed for tax deductions for treatment expenses for certain serious diseases. More details on the group discussion can be read at: http://www.caregiverslinkonline.com/contact-us/cw-jul_nov-2011/caregivers-discuss-top-of-the-mind-issues/

The bottom line is this, that there are three points of critical partnership in care giving: 

• Patients – care-receivers
• Professionals – Doctors, nurses, paramedics, care attendants, hospitals, institutions, ambulances, and medical services, products and equipment providers
• Families – informal caregivers

A moment of calm for caregivers - at a recreational event for care families
organised collaboratively by Animal Angels Foundation, Petsitters and
Caregivers Link, Pune, 2013. Photo credit: Caregivers Link

There are multiple reasons or circumstances across chronic or terminal illnesses and challenges to ability, which could necessitate care. When we began discussing these things, a little before 2010, the experiences and issues all had personal meaning for us. Cancer was a reality some of us were dealing with as caregivers. So was depression. Schizophrenia. Intellectual disability.

We had faces and families close to us, real people who went into rooms for treatment, therapy, institutionalisation, real people who walked in with them, waited for them, consulted doctors or hysterically phoned a friend when a beloved family member with mental illness abused them or threatened them with a kitchen knife.

As a country, we haven't reliably done the study and statistics for all the illnesses or challenges to ability yet. We do have a count of doctors, hospitals, care institutions and this count may not be entirely reliable but it exists. One critical thing we really do not know is the situation or statistics of informal family caregivers.

No single doctor, healer, hospital or institution, despite vast learning and experience, can diagnose or manage treatment or therapy for every kind of illness or disability that exists. But between them all, the world hopes there will be an effective option for a given medical or ability challenge.

Every single patient or care-receiver at various levels of learning or experience is required to cope with living with an illness or disability. There are no options here. And for many care-receivers, perhaps for a majority of them, there is at least one person providing care, support, management of life through whatever be the challenge. This person is generally a family member or significant other. This is the informal family caregiver, a parent, child, partner, sibling, grandparent, grandchild, sometimes friend or colleague – also at various levels of learning or experience.

It does not matter how close or estranged the family, what disagreements and miseries may eat at the core of key relationships, or how close the ties that bind the people – when caught in care relationships, you have to figure out all of it to be effective. A difficult task often made harder because of the invisibility of the care role.

In Caregivers Link, our focus is on the informal caregiver and the role everybody plays in care management, including the care-receiver. Professionals and providers of products and services must open the door to dialogue with the caregiver along with the care-receiver.

We believe that this invisible and ignored care role is possibly the most critical to continuity of care, management of illness or challenge to ability, and quality of life of the person primarily dealing with the challenge. The purely medical model of health care provides an inadequate approach in the face of the multiple other factors that are in the socio-cultural and community realm. It is time we re-modelled our approach.

More Caregivers Link information can be accessed here:

1. Caregivers Link website: www.caregiverslinkonline.com

2. Caregivers Link contact information: http://varta2013.blogspot.in/p/resources.html?zx=bc0a3083ec01510f

3. How Caregivers Link came to be: http://www.caregiverslinkonline.com/contact-us/2010-2012-round-up/

4. Read more about communication between family members and others in the world of care – http://www.caregiverslinkonline.com/discussion/care-talk/so-at-caretalk/

5. Read a brief sharing from Janet's experiences as a volunteer counsellor, about some of the real issues that people with long term diseases have: http://www.caregiverslinkonline.com/discussion/my-volunteering-experience-with-multiple-sclerosis-patients/

6. Take a look at this audio-visual, where Dr. Harish Shetty shares his perspective on mental health and mental illness – https://www.youtube.com/watch?v=HUaLfYQAnXA

7. Caregivers Link conducted a needs identification workshop with family caregivers to individuals dealing with mental health challenges and you can access the report here: http://www.caregiverslinkonline.com/discussion/report-needs-identification-workshop/

Shikha Aleya is a writer, consultant and communication professional with over two decades of experience in the corporate and development sectors. Her current areas of focus are health systems and family care giving, women's rights and child rights. She is a founding partner of Caregivers Link, a social venture based across Pune, Mumbai and Delhi (www.caregiverslinkonline.com).