Keep their doors open
grip as she begins gently rotating her frail wrist as part of regular physiotherapy.
Ndimande calls out in pain.
“Sorry, my darling,” Dlamini says, softly stroking her arm.
At the start of 2018, Ndimande was diagnosed with late-stage Alzheimer’s disease, the last phase of a progressive brain condition that causes loss of memory and mental function, according to US nonprofit Mayo Clinic. The condition can also contribute to muscle deterioration, a 2010 study in the journal JAMA Neurology found.
Ndimande’s muscles have begun to waste away. The lack of movement has also stiffened the muscles in Ndimande’s hands, leaving her in so much pain that she can no longer feed herself.
Three times a week, Dlamini tries to ease the agony, coaxing a little more movement out of the clenched muscles with special exercises.
When Dlamini isn’t there, Ndimande’s sister, Joyce, takes care of her — this includes helping her with these kinds of small exercises as well as bathing, feeding and turning her regularly in her bed to prevent bed sores.
“I don’t get a lot of sleep,” Joyce admits.
She remembers the day her sister was no longer herself.
“In the beginning, she complained of severe headaches. Then, she started to tell me there’s ‘something moving in her head’.”
One day, Busisiwe just stopped talking.
“Right now, she doesn’t even know where she is. Or who I am.”
Taking care of someone with a terminal illness such as Alzheimer’s disease can be debilitating for family members, Dlamini explains.
“These diseases cause a lot of stress. Some family members can’t handle watching a loved one get sicker every day. You know, sometimes, they don’t eat, or cry from the pain.”
She admits: “It’s difficult to watch.” A 2016 study published in the European Journal of Cancer Care showed family caregivers — even those who had support from people such as Dlamini — reported having a lower quality of life than the general population.
But people who care for sick loved ones and get counselling and support from hospice workers are less likely to become depressed, a 2015 study published in the Journal of Clinical Oncology found.
Nurse Maria Malahlela believes Busisiwe — and Joyce — are just one of many Soweto families that are in dire need of the now-closed inpatient unit in Diepkloof.
Joyce sighs: “If they still had that unit, I would be so happy.”
Her voice breaks as she thanks the nurses for their help. “I don’t know what to say, they’ve helped me so much. With everything.”
Dlamini explains: You know it’s rewarding even to see the family members smile when they see us coming.
“Then they can relax. Even if it’s just for a while.”
Soweto isn’t the only community to lose in-patient hospice care as funding dries up. Eight in-patient units around the country have been forced to close and several other hospices are on the brink, Gwyther warns.
“We anticipate significant money problems over the next few years.”
Shops selling donated goods, bring in just over R12-million per year for HospiceWits. But the rest must be sourced through government, trusts and donations. Gwyther says many corporate donors would rather fund education and social upliftment programmes than health initiatives.
And then there’s the stigma, Dikeledi argues.
Community stigma means some families are hesitant to send loved ones to in-patient care. In Diepkloof in Soweto, this meant the hospice had fewer than five occupants since 2015, Kaye says. Without the patient numbers, it’s hard to rally donors for support, Dikeledi admits.
“People are still afraid other people will find out that they could have stigmatised illnesses like HIV.
“They believe hospice is a place you go to die.”
A new national palliative care policy approved last year would help take care out of stigmatised facilities and into communities with local teams treating bed-bound patients in their homes.
Palliative care training will also be compulsory at the country’s eight medical schools.
Most doctors are ill-equipped to provide this type of care, Gwyther says.
“Doctors are trained to treat the illness, not the person.”
But Gwyther warns that there has been no discussion about how the plan will be implemented — or funded.
Gwyther says she has written to the health minister and the head of the palliative care steering committee and KwaZulu-Natal health MEC Sibongiseni Dhlomo, offering HPCA’s support in phasing palliative care into everyday running of the country’s health system.
Until then, hospices will be left to brave the competitive world of donor funding and more families will rely on the country’s struggling palliative care facilities.
Nonetheless, palliative care patients in Soweto are in good hands. Malahlela explains, still massaging Ndimande’s sore muscles: “We are so grateful to see the difference we can make in the community.”