There are people whose journeys with us affect us more than others. Every person shapes us differently, whether it is their journey to recovery or their final journey. The bond between carers and patients is so intimate, like a sacred thread woven through compassion and shared humanity. The carer is the one present in your most vulnerable moments, but the patient is also the one who gives the carer purpose.
Because I am not involved in the day-to-day care of our patients, or on the clinical team, I have a bit of distance, and I don’t walk these journeys as closely as the rest of the team, but every now and then, a person arrives here, and I have no chance of maintaining distance; they simply climb right into my heart and then all the boundaries I think are firmly in place, just collapse around me.
This is what happened when Elise arrived at Recovery in February.
Both lodges have a close relationship with an insurance company who brings patients out from Zambia, and when they called to ask us to take on a neuro-patient, we started putting therapists and equipment together based on the doctors’ reports to prepare for her arrival.
When Elise arrived in an ambulance, on a sweltering hot afternoon, we immediately saw that she still had a nasogastric tube for feeding purposes. Doctors rarely discharge a patient with one of these, as care is extremely tricky. Patients easily aspirate, the tube often gets dislodged, infection risks are high, and the tube is terribly irritating and uncomfortable. In theory we should all have waited for Elise to get weaned off the tube, but Elise was a ‘boeremeisie’ from a cattle farm with big blue skies and rolling hills. Being in the hospital with bright lights, constant noise and fear-filled corridors was destroying her. We all agreed, she would recover better out of, rather than in hospital.
Once she was settled in her room here, I went to sit with her as Nthabiseng gently tucked her in. Elise could not speak. Her body was weak, and movements were jerky and uncontrolled. Her eyes were full of fear. I reached out to her and her fingers folded around my hand, gripping my hand firmly. Without thinking I said “Don’t worry. We’ve got you now,” and without either of us knowing, this was the start of a cherished friendship.
As suspected, the nasogastric tube was a horror. It caused irritation and rashes. On two separate occasions Elise pulled out the tube and had to go back to hospital to have it re-inserted. It got blocked once or twice and was always in her way. Eventually a trauma surgeon inserted a PEG (percutaneous endoscopic gastrotomy) and this made her care easier and freed Elise up to really focus on recovery.
At the same time, Elise’s husband Charles, was also busy recovering in South Africa. Can you believe, both husband and wife were medivacked within a few days of each other? Once Elise was discharged from hospital after the PEG surgery, we booked her and Charles into rooms next to each other. It was beautiful to watch this couple, who after years of marriage, now walked a new and different road together. Charles would shuffle to her room, and they would just be together; no words were necessary. He loved her with a fierce proud love. She loved him with a gentle adoration and teased him when he got too bossy or jealous.
We started the rehabilitation and Elise had a dietician, social worker, speech therapist, medical doctor, occupational therapist and physio therapist. We allocated three carers to her so that there would be continuity and so that they would grow with her as she recovered. We see how a patient gets frustrated when carers are not in tune with their cues and their adapted communications. Thelma, Esther and Bongiwe became Elise’s hands and feet, and I loved watching them interact with gentle humour and tenderness. As Elise took on what would be the biggest challenge of her life, we all stood back in awe. I don’t know how she did what she did, but without being able to speak or move like she used to, she had us all wrapped around her finger. Everyone just loved her. The auxiliary team that worked with her all loved coming to see her. We could hear them laugh and chat and literally see friendships form. Her daughter, son, and children-in-law rotated so that she was never alone. As she got stronger, her sense of style and fashion returned and hair and make-up was done daily. She would often insist that I put on some of her favourite pink lipstick. I clearly needed a bit of colour. Elise gave us all an enormous fright one day when she whipped out her PEG! She had to be rushed to hospital, had it re-inserted and came back as if nothing happened. She simply took all these set-backs in her stride.
Elise needed to get strong enough and learn to swallow and eat on her own so the PEG could be removed and she could get home. She had a simple goal: she wanted to taste fillet steak from their cattle farm again. To get home she would also have to be strong enough to sit up for extended periods, be moved from the wheelchair to a vehicle, and be physically strong enough to endure the journey home.
It took 8 months, a lot of setbacks and tears, incredible triumphs and belly laughs, and eventually Dr Jenni gave the go-ahead and removed Elise’s PEG. Elise grew stronger and finally had some fillet steak (from Woolies, and sadly it was not as good the homegrown on the farm variety). I would pop in each morning and she would always, without fail, find something nice to say to me. She’d say my hair looked nice, she loved me, she loved the garden, or say I have a beautiful heart. She gave advice on how to make the best vetkoek, how to dry biltong, what plants to plant where and every day, sometimes more than once, I would get a kiss on my mouth. She had a bit of an unhealthy obsession with Elvis and his music was always playing. In fact, Thelma and I would often do a karaoke rendition of “Love me tender” for her, which probably made the King of Rock roll in his grave.
She was not a patient or a guest to us. She was someone we deeply loved. She enriched our lives by just being there and exuded grace and kindness. Her broken body could not contain her extraordinary soul, and we had the honour of being witness to this exceptional human being.
Elise finally got back to Zambia. She re-united with her dog (obviously called Elvis,) had fillet steak and was rolled around her garden
And then, a few weeks later Elise gently slipped away.
I don’t ask questions about journeys like Elise’s anymore, nor do I measure courage by challenges a person faces. I cannot understand why she had to fight so hard these last eight months, only to return to pass away after all this effort. For now, I am, like Thelma, Esther, Bongiwe and the rest of the team, just so incredibly grateful that she came to shine her light on all of us. Elise’s unparalleled presence reminds us, every day, why caring is a privilege and how powerful simple acts of kindness can be, and how you can touch and change lives despite physical challenges. She reminded us how we heal, whether we are cured or not. Elise taught me that care is not a one-way act of service, but rather a sacred exchange in which we serve each other.
Did you know
About 240 people suffer a stroke every day in South Africa. For up to 70 of these individuals, a stroke is fatal, but it leaves many others with serious and lasting disabilities. Strokes are one of the leading causes of long-term disability in the country. While the risk of stroke increases with age, up to 14% occur in those under 45. Strokes can be mitigated (up to 80%) by lifestyle factors like managing high blood pressure and weight.
Common signs and symptoms of strokes can be remembered using the acronym “BE FAST”:
B (Balance suddenly off)
E (Eyes – sudden trouble seeing with one or both eyes)
F (Face drooping)
A (Arm weakness)
S (Speech difficulty)
T (Time is critical in treatment – call emergency services and get help ASAP)