While dedicating our time and efforts to caring for a loved one with an ongoing illness can bring a sense of fulfilment, it is important to consider the potential consequences of neglecting our own health and wellbeing. Experts caution that caregivers who disregard their own needs may ultimately find themselves susceptible to illness and exhaustion.

Caring for a chronically ill patient can lead to feelings of exhaustion, anger, and guilt, known as caregiver stress syndrome. Helene Nkerenke, a 73-year-old nurse, is one of many individuals who have experienced this syndrome.

She recalls caring for her mother for seven years when she battled Alzheimer’s disease (a progressive illness that destroys memory and other important mental functions.)

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With time, episodes of back aches and general fatigue kicked in as her sleeping time was compromised by frequent movements between her room and her mother’s to check if she was okay, and occasionally having to spend the night in her room.

This is because Nkerenke’s mother experienced sleep deprivation, which often leads to increased restlessness and movement similar to what is commonly observed in patients with Alzheimer’s disease.

However, she managed to get a few sessions of physiotherapy and sick leave to relieve her back pain.

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On some occasions, Nkerenke wished there were centres where she could have her mother cared for so that she could take a break.

"I had got accustomed to the routine of hospital and home. This affected both my personal and social life. Though I had prayed and wished that she may find rest, when she finally did, I did not find it an opportunity for me to resume my socialising because she left a big vacuum that was hard to fill. Plus, there is a feeling of guilt that at long last, one is now free,” she said.

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Dr Janvier Muhire, a clinical psychologist at mHub Clinic, explained that with caregiver stress syndrome, care providers sometimes feel even more stressed than the patients.

This is because they get lost in caring for others and forget to cater for themselves, and their needs.

For him, this is a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress. As the stress lingers, one begins to lose the interest and motivation that made them take the role in the first place.

"You feel emotionally exhausted and unable to meet constant demands, empty, mentally exhausted, and you lack motivation. People experiencing caregiver stress syndrome often lack hope of positive change in their situations,” Muhire said.

Dr Celestin Mutuyimana, a psychotherapist at Baho Smile Institute (a psychotherapeutic and research centre), describes caregiver stress syndrome as a collection of three main symptoms, that is, exhaustion, chronic fatigue, and insomnia somatic symptoms like stomach pain and backache, anger and guilt.

He noted that at an extreme level, people with caregiver syndrome can manifest typical symptoms of depression.

According to Mutuyimana, this syndrome is caused by caring for a person with chronic disease including faecal incontinence, memory loss, aggressiveness, hyperactivity disorders, autism disorders, and so forth.

Mutuyimana said this syndrome exists already in Africa, though most people are ignorant about it, as they tend to claim it is witchcraft.

Muhire explained that as a caregiver, you can tell you're stressed when every day feels like a bad day, when caring about your work or home life seems like a total waste of energy, when you’re exhausted all the time, when you spend the majority of your day on overwhelming tasks, or when you feel that nothing you do makes a difference or is appreciated.

"People with this condition usually feel tired and drained most of the time, often get sick due to lowered immunity, get frequent headaches or muscle pain, change in appetite or sleep habits, have a sense of failure and lack of confidence, and absence of motivation,” Muhire explained.

In addition, such people usually detach from others, feel alone in the world, lack self-satisfaction and a sense of accomplishment, withdraw from responsibilities, and use foods, drugs, or alcohol to cope.

Prevention

To keep caregiver stress syndrome at bay, Muhire recommends seeking assistance from others, taking enough rest, and acquiring help from a counsellor or psychotherapist for personal development or therapy sessions.

Mutuyimana advises explaining to the patient the cause of the disorder, exploring the alternative of resting, helping the patient to find another person to help, or teaching the sick person how to control their symptoms.

Mutuyimana also said that the exhaustion status is always or most of the time linked to somatic symptoms including high blood pressure and headaches. This can push the person to a chronic status of illness, depression, and in extreme cases, even cause death.