Caring for those who care: a call for action.

by Elna Schmidt

Those who have already experienced a moment in their life where control slips through their fingers know the pain that comes with the realization that for life to be the same again, it needs to be static. It is not. There is no default to which life can return; it has changed. March 2020 marks for many the beginning of such a drastic change, causing life to be altered for good. However, for me, March 2020 also signifies immense pain and the beginning of a horrific journey.

In March 2020, my mother was diagnosed with brain cancer, which, unbeknownst to us at the time, would claim her life merely a year and four months later. In January 2021 the doctors declared the fight over and lost. Only seven months later, my mother was put to rest among the inhabitants of the Wadden Sea on a day which will be remembered by my family for the water’s still surface, the presence of a warm, embracing breeze, and the words of my 82-year-old grandfather, who had lost his youngest daughter, pleading to be next.

My biggest fear had always been to lose a parent, especially my mother, prematurely. For, to me, losing my mother not only signified the loss of a loved one, but also the loss of life lessons, support, love, empathy, and guidance. The pain seemed unimaginable, until it became imminent and certain. And suddenly all too real.

It seemed only fair to me to look out for those who gave me their all: my family. In January 2021, I requested leave from my job, packed my bags, and took a train home to care for my mother and my family as best I could. At the age of 23 I dropped everything to care for a parent who only had one final birthday left to celebrate. As my mother slowly lost her ability to walk, to access her vocabulary, and the motor functions to speak, I remained by her side. Here, I grew to love her in another way, equally painful as it was beautiful, as she slowly became a stranger to me.

Caring for another human being takes a unique toll, both mentally and physically. This is predominantly experienced by women, as they make up most of the world’s private caregivers. Multiple investigations into gender differences within informal (i.e., private caring for a family member) have shown that women are more likely to be pushed into the role of caregiver due to a lack of resources, opportunities and/or an unequal distribution of responsibilities within the household or family. The consequences for women may be severe: psychosocially, physically, and mentally.

The burden of caregiving is not only more often borne by women, but it is also usually more detrimental to their overall health. It can be argued that women often feel more responsible and obliged to care for their family members, which can result in a feeling of imprisonment in her role. This is supported by research which has shown that men, if pushed into the caregiver role, are more likely to delegate care giving tasks to others, mostly women, and frequently their daughters. Due to the dedication of more time to the task of care, women often suffer from negative affect and severe depression, and their physical health deteriorates as well, proportional to the time they spend caring for the family member.

As a woman who cared for her dying mother, my experiences mirror what psychological, sociological, and medical research has known for a while: I started to neglect myself and began living for my mother. I structured my time around her needs, all the while still writing my bachelor thesis. I rarely left my mother’s side, like every moment had to be treasured, and would disappear if I so much as blinked. The consequences were dire, as I started feeling socially isolated, unhappy with my current life, and like I had no control over anything. Social isolation especially causes negative affect, depression, anxiety, and even a decrease of physical health. Humans are inherently social, needing the support, touch, and affirmation of others to feel good about themselves and their lives.

Yet in all my personal pain, it is unfathomable how lucky I was and am: I was just a student with a part-time job and had my father and his steady job which was not impacted by the COVID-19 pandemic to help us remain financially secure. Women between the ages 45-59 and  of a lower socioeconomic status who often take on primary care responsibilities for their partner as they age and/or fall ill, are frequently left with a weaker attachment to the labor force. They take on part-time positions or give up their jobs altogether to care for their loved one. The same does not apply to men in a similar age bracket: men between 50-60 years of age seldomly give up their jobs for care giving, whilst women their age predominantly find themselves caring for their parents.

Race is also a crucial factor: Black, Hispanic, and Asian American women often take on the responsibility of caregiving, although men of these demographics also tend to be more involved in caregiving than white men. Furthermore, requesting leave to care for a loved one brings in its wake detrimental effects to women’s ability to re-enter the job market, especially at a full-time capacity. The less educated these women are and the less funds they have, the more negative are their experiences with the job market, both while they are in it, and when trying to re-enter it.

Many European countries now offer so-called “Cash for Care”-schemes which provide the private caregiver with financial resources for staying at home with their family member or friend. As good as this idea might seem on paper it further deepens pre-existing social inequalities. Women often earn less than men, as the gender pay gap persists. In countries with these financial care schemes women often earn more or a comparable amount of money from this financial incentive than in their own jobs. Since their male partner tends to earn more, these women opt to contribute to their family’s financial security by having their partner continue to work while they stay home with the person in need of care.    

Receiving financial assistance, even if provided, usually requires overcoming the long and complicated obstacle of bureaucracy. Caregivers often lack the energy and time needed to receive financial assistance, resulting in a danger to experience financial trouble, which is again associated with negative affect, depression, and anxiety. However, even if money is awarded, this does not eradicate all detrimental effects of being a full-time caregiver.

Even though those caring for my mother received financial help, this did not suffice. I still needed help. And I asked for it. I vividly remember when the much-needed palliative care service rejected our plea for help on grounds of missing an official order, all after my mother had already become incontinent, and while she was unable to get up herself. We could not provide the care she needed; we were not professionals. Finding the right words to describe our desperation is impossible. Leaving women to their own devices in these times of need is not only unjust but unethical. Countries like Finland now provide care schemes which allow people to receive help from trained professionals, which has resulted in humane care for many, irrespective even of the families’ social economic statuses.

My story is a story of privilege. My parents belonged to the white, upper middle class, making it relatively easy for us to finance our trauma. Women in low to middle income countries, and therefore often women of colour, more frequently report that even just having someone ill at home who does not necessarily require informal caregiving, hinders their ability to complete tasks of everyday life, resulting in diverse mental health problems for the women in question. And although I wrote my thesis during my mother’s final months, I cannot begin to imagine the additional burden that having to provide for and manage her family’s life will cause a woman. My whiteness and wealth shielded me from worse: a fact as incomprehensible as it was to see my mother take her dying breath while I told her how much our late dog must be looking forward to seeing her.

So overwhelming are the burdens of caring for some caregivers that they often note a significant increase in reported life satisfaction upon the death of their ill partner, while the same is not true if the partner, their loved one, survives. This is especially true in countries where inadequate financial or alternative support in the form of professional caring personnel is offered to caregivers, as the financial and emotional strain will remain even if the loved one survives and recovers from their illness. This does not surprise me. As my mother’s health steadily worsened, so did mine. I began to feel emotionally drained, unable to enjoy anything and only focused on providing my mother with the care she deserved. As I felt my ability to give to my mother what she deserved faded away, I began to wish for what she needed: a death which would come soon. Both to ease her suffering and my own. No one should have to feel that way about their own mother. No one should ever feel like the only way out of a horrible situation is for their loved one to die.    

Based on the evidence I have outlined and on my own experiences it seems to be the norm that those who give everything for a person they love are forgotten about and left to their own devices, managing grief, anger, and a significant decrease in quality of life. It is women of colour with lower income that suffer. This should not be fact, and laws and regulations ought to be changed to support those making such a big sacrifice. Especially as our society ages rapidly and more and more private caregivers will be needed.

My recollection of events aims to deromanticize life as an informal caregiver. It is painful, filled with fear, anger and, at times, sad anticipation. It is not just an honorable sacrifice. Boundaries dissolve, needs are no longer met.

Caregivers need help.

Women need help.


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