Care For The Carers

Exhaustion, depression and back injuries: it sounds like a list of patients’ ailments. But that’s the list of common problems that otherwise healthy people can have when they are full-time carers to their ill or aged family members.

“We hear about exhaustion a lot,” says Sue van der Linde, founder and chair of Iris House Children’s Hospice in Cape Town. “There’s a feeling of complete isolation and despair; they used to have friends, but the caring is all-consuming.”

“Many carers are simply not suited for what is a physically and emotionally charged undertaking,” adds Mike Mortimer of Caregivers West Rand. “This is not anybody’s fault, nor does it indicate a lack of compassion. Being a full-time carer is exceptionally draining.”

Alice Ashwell of Dementia Connections is an educator and life coach who focuses on supporting those who care for people living with dementia. “Many of us have been raised to put others first, so we forget to care for ourselves. This can result in the care partner burning out physically and emotionally and their health suffering. It can also lead to resentment towards the loved one.”

All three experts point to back issues as the most common physical pitfall of being a carer, but the mental health consequences are also serious. “Watching one’s loved one suffer or deteriorate is very hard to experience. The carer sometimes feels guilty for not being able to do more to alleviate the suffering,” says Mortimer.

Ashwell says, “Feeling overwhelmed may result in irritability, frustration, anger, confusion, sadness, depression or other emotions. While we all feel these emotions sometimes, dwelling in these states is a sign of chronic stress.”

Caring for someone with Alzheimer’s or dementia is probably the most demanding of all, says Mortimer. “As the disease progresses, the person affected will become more difficult to manage. The fact that they may not even recognise you is distressing and hurtful. Accepting that you’re caring for someone who no longer resembles the person you’ve always loved does not come easy.”

So carers need to look after themselves as well. Ashwell says a UK study called START (STrAtegies for RelaTives) demonstrated that care partners who fared best were those who were emotionally resilient.

“While problem-solving skills helped on a practical level, being able to manage one’s emotions made the greatest difference to the care partner sustaining his or her energy,” she says. 

Van der Linde says carers need to “take off the caring hat sometimes”.

“We offer respite care so parents can have some time off for a bit of a break. They need that to maintain some sense of normality, for their own health.”

Ashwell says caring for a loved one is a “journey of loss and love”. 

“It is natural to experience a range of emotions and to take time to adjust to becoming a care partner, so be kind to yourself.”

Signs that you might need professional help

Mike Mortimer of Caregivers West Rand says knowing when to move a loved one into a care facility depends on various factors, including:

Whether your loved one is in danger of injury from falls or other events when you’re not around.

If your loved one living with Alzheimer’s is becoming violent and abusive or wandering off. 

When there’s no support from other family members.

Caring for a terminally ill child

Caring for a child with a terminal illness like cancer is particularly draining, says Vera Lepheana, a social worker with CHOC Childhood Cancer Foundation SA. “It’s exhausting and often (carers) break down emotionally, because it’s all too much. It also has a financial impact on parents as they often have to stop working to look after the child. Or they have to keep working and are unable to cope at work, or feel guilty for not being with the child.”

Lepheana has some simple tips for parents:

1. If you are not coping, speak up and seek help.

2. Share the responsibility where possible – ask someone to stay with the child if you need a break.

3. Take time to ensure you are doing the basics like eating properly and getting enough sleep. “You can’t help your child if you are unwell yourself,” she says.

4. Make sure you have all the information you need so that you know what you are dealing with. Ask all you need to know.