LIVE BY DESIGN | Choosing hospice care for a loved one is a compassionate decision, not neglectful


Caring for a terminally ill loved one is not easy, but it’s a privilege to be able to do so.” Rosalynn Carter, former First Lady of the United States and caregiver to her husband during his battle with cancer. She made this statement at the Annual National Conference of the American Foundation, where she shared her personal experience as a caregiver to her husband, Jimmy Carter. In her speech, she emphasised the importance of hospice care and the need for more support for caregivers of terminally ill patients. That was in 1995.

Twenty-six years later, British author Emily Kenway has written a powerful account of the experiences of unpaid caregivers. Speaking on the Christina Amanpour show this week about the book, Who Cares: The Hidden Crisis of Caregiving and How We Solve It, Kenway made an impassionate call to all of us to put care at the centre of lives and of the caregivers.

She explores the gift and burden of caregiving. She notes that while caregivers may feel burdened by their responsibilities, they are also given the gift of being able to make a difference in someone else’s life. However, she highlights the importance of recognising the challenges faced by caregiving and taking steps to address them. She gives an account of how caring for her terminally ill mother changed her life and the economic costs that come with this act of love.

I’m a caregiver to my 82-year-old aunt, who lives in Soweto. Her medical issues are common, and she enjoys a comprehensive care plan that addresses all her medical concerns. Right now, my priority is to ensure that she has someone to accompany her to her monthly hospital visit, that she is receiving proper nutrition, and that there is someone to watch over her.

It is a privilege to be able to provide this care for her, but I am concerned about her future care needs as she approaches another milestone birthday. I know the weight and responsibility of being a caregiver for a loved one who is ill or in need of constant care. I have lost loved ones through multiple sclerosis, Alzheimer’s, cancer, and other incapacitating diseases.

What if the person helping her finds a job in another city or her medical condition requires a full-time caregiver? What if she is diagnosed with one of those dreadful terminal illnesses that impact an individual’s ability to perform daily activities or live independently?

The act of caring for someone else can be just as fulfilling as being cared for oneself. However, I fear that balancing my work and her care needs may become overwhelming. Will society see me as compassionate or neglectful if I choose to take her to a place like a hospice? What happens if my financial standing changes with no training to provide health care? I’m worried about the burden of caregiving.


Honouring caregivers 

Caregivers are those who take care of family members or partners as they battle terminal illnesses. They often provide emotional and physical support during this difficult time and are responsible for managing medical appointments, medications, and daily household tasks. While caregiving can be a rewarding experience, it is also a challenging and stressful role that can affect the caregiver’s mental and physical health.

I have watched people suffer as the weight of caregiving takes a toll on both the caregiver and their relationship with others. It’s not uncommon to hear families faced with this challenge accusing each other of neglect and other things.

The caregiver may feel overwhelmed and stressed, leading to strained relationships with other family members. Additionally, some family members may feel that the caregiver is neglecting their own well-being to provide care for their loved one.

This can create feelings of resentment and frustration that can further strain relationships. All family members need to recognise the challenges of caregiving and work together to support the caregiver and ensure that everyone’s needs are met. Communication, empathy, and understanding are essential for maintaining healthy family relationships during this challenging time.

One way to support caregivers is to offer them respite care. Respite care provides temporary relief to the caregiver, allowing them to take a break from their duties and recharge. Another way to help is by providing practical assistance, such as grocery shopping, meal preparation, or transportation. These small acts of kindness can go a long way in making the caregiver’s life easier.

It is also important to offer emotional support to the caregiver. Listening to their concerns and providing a supportive listening ear can help alleviate some of the stress they may be experiencing. Additionally, offering to accompany them to medical appointments or support groups can provide much-needed emotional support.


The option of hospice

I’m currently conversing with my aunt about all the “what ifs”. All options are being explored, including a nursing home and hospice. Some may see sending a dying relative to hospice as neglect because they fear the loved one will not receive adequate medical care or attention in the end-of-life facilities.

However, hospice care offers specialised healthcare that provides comfort and support to people facing serious illnesses. It involves a team of professionals addressing patients’ physical, emotional, and spiritual needs.

In South Africa, hospice services are widely available through a network of non-profit organisations and government facilities. These organisations provide various services, including palliative care, counselling, and bereavement support.

However, in Soweto, a place that over a million people inhabit, there are only three such facilities, including HospiceWits, The Soweto Hospice Association and the Thembalani Care Centre. Public hospitals that are overburdened sometimes transfer terminally ill patients to their homes to free up beds for patients who have a chance of recovery.

This means many untrained people will – whether by choice or not, be caregivers to a dying relative, parent, or partner. It also means this option might not be available to my aunt. The country needs more hospices.

Caregiving is a challenging and stressful role that requires a lot of support and understanding. By recognising the gifts and burdens of caregiving, we can better support our loved ones who take on this role. Do not judge those who opt for hospice because caregiving is not for everyone.

Be sympathetic to your employee, partner or relative who has chosen to be a caregiver. Offering respite care, practical assistance, and emotional support can make a significant difference in the life of a caregiver. Remember, even small acts of kindness can make a significant impact.

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