How does it feel when your worst suspicions are confirmed? When the sickness that has been gnawing away at you is suddenly running wildfire through your body?
When the specialist says there is nothing more they can do? For Heinz the decision was easy. He would return to his native Switzerland and ask for an injection which would speedily and easily take him out of this life. But his family were heartbroken. It had not been easy to walk the road of his illness with him so far, but he was their beloved husband and father and to have him suddenly remove himself out of their lives was too much to bear. Fortunately, Heinz’s GP was a doctor familiar with the specialised care of Helderberg Hospice and after a serious talk about how meaningful the final days of life can be to a family caring for a loved one, Heinz agreed to stay at home under the supervision of a Hospice sister.
Heinz’s daughter, Karin, recalls the last two weeks of her father’s life as being a wonderful experience for them as a family. “The Hospice sister was able to successfully manage his symptoms of discomfort and pain and our father was able to be in his beloved home, with his family and all that was familiar and comforting to him. And for the first time in our lives, we were able to give to him. He had always been such a strong and fiercely independent man that it had been difficult for him to receive from others. But in those last days we were enabled to care for him physically and emotionally in a way he had never allowed us to do before. The Hospice sister showed us how to bath and care for him, so our loving hands and arms were on him and around him all the time. We were each able to spend time alone with him and say our thank you’s and goodbyes. He died gently, surrounded by our love.”
Helderberg Hospice believes that people matter because they are. They matter until the very last moment of their lives and at Hospice we will do all we can, not only to help patients die peacefully, but to live until they die.
It’s a deadly combination: South Africa’s scourge – TB – and the pandemic HIV/Aids. Where there is one, there is frequently the other; both interlinked in a complex dance of disease and deprivation. Like lethal shadows, the one stalks the other, masking symptoms, complicating treatment, spiraling the mortality statistics ever upwards.
Jack was destined to be a statistic. At the age of 33, he was doomed to become yet another figure in the tables and graphs that show the relentless rise in deaths in ever-younger age categories. The local clinic referred Jack for anti-retrovirals when it became clear that he could not hold off the HI virus within his system on his own. He was routinely tested for TB and after showing up positive, was referred to Helderberg Hospice’s Home Based Carers, a team of specially trained women who monitor and support those in the community with HIV/Aids. While Aids is a killer disease, it is not a death sentence to be diagnosed HIV positive. Hospice, in line with its mission to improve the quality of life of all who are referred for care, strives to keep these patients motivated to take their sometimes complicated regimes of medication and to live healthy lifestyles.
Within two weeks of starting treatment, his condition started to deteriorate rapidly. A few days later he was admitted to the In Patient Unit at Helderberg Hospice, a ten bed fulltime facility, where seriously terminally ill patients are given high quality medical care. His list of symptoms was frightening, ranging from drug-induced hepatitis to renal failure. Most people would assume that this man did not have long to live; that he had been admitted to Hospice to die. But that would be without reckoning on the deep and professional concern for every patient under the care of Helderberg Hospice. The nursing staff immediately devised a strategy of specialised care, co-coordinating the services of the ARV and TB clinics, the local hospital and the expert medical advice of the Hospice doctor. He spent two weeks undergoing extensive tests and was given optimal care and support. Good food, good care, good motivation for life. It was the recipe for a miraculous recovery and those who cared for Jack were delighted to see him turn the corner, fight the diseases that sucked the very life-breath from him and defy the death that loomed over him.
Today Jack enjoys a well-managed level of good health. He has been able to return to his job as a golf caddy which means he can provide for his young family. With the sustaining support of Helderberg Hospice monitoring his physical, emotional and psychosocial circumstances, Jack is motivated to take his medications and make the necessary lifestyle changes. A man who was assumed to be on his deathbed is, today, a man who contributes to society instead of leaving dependents in need of State aid. Helderberg Hospice made the difference. The core value of making the most of life while there is life, is what drives the high standards of specialised care according to each patients needs. When others may say there is nothing more to be done, Helderberg Hospice says there is much we can do. And we will do it to our best.
Thandi, as I’ll call her, is in her early 20’s and recently had undergone an amputation at the knee as a result of osteosarcoma. She was admitted to us from Tygerberg Hospital, one of the large State hospitals in Cape Town, so that she could recuperate from the operation. Unlike the other patients who were very ill, once Thandi was over the immediate trauma of the amputation, she became bored with just being in bed. The nursing staff looked around for ways to keep her happy and stimulated. Thandi expressed a desire to learn to crochet, but before wool could be found for her, one of the sisters presented her with a 5 000-piece jigsaw puzzle. Our young patient immediately rose to the challenge!
Thandi comes from very poor circumstances and had probably never built a puzzle in her life before, but was determined to complete the beautiful floral picture. With advice from all the nursing and cleaning staff at the IPU, she was soon sorting out the border pieces and construction started. Undeterred by less than ideal conditions (the only table available was a slatted one which had to be covered with a cloth to stop the pieces falling through!), Thandi embarked on what was to become an all-consuming mission during her stay with us. Day by day, the puzzle grew, not only physically, but in importance to her. As her leg improved it became a race against time to complete the picture – and it seemed that Thandi would have to be discharged before she had put all the pieces together…
The night before Thandi was due to go home was a bad one for her. She tossed and turned and became agitated to the point of vomiting. A quick staff meeting was called in the morning to discuss the situation and it was decided that the patient would be allowed to stay for two days longer. Thandi set to with a will and tackled the trickiest parts with new determination. To everyone’s delight the last piece was slotted in the day before her discharge. Thandi was so exhausted after her marathon session that she went to bed for the rest of the day and the photo-shoot of the victorious puzzle builder with the completed item had to be postponed several times while she slept the hours away! Her delighted expression in the photograph is testimony to the pleasure and pride she felt at having completed this mammoth task.
This story is an illustration of the holistic care on which the Hospice movement is based. The emotional wellbeing of the patient is just as important as the physical. Our nursing sisters so often report that a patient who is at peace with themselves and the circumstances around them, experiences less pain – and this was definitely the case with Thandi. She was discharged the next day with several puzzles to complete at home and the prospect of being able to come to our Day Hospice to learn how to crochet.
I hope you have enjoyed this story as much as we enjoyed having Thandi to stay with us. Her sweet nature and shy smile ensured that she crept deep into our hearts and it was very motivating for all the staff to be able to work with a patient who was improving and getting stronger every day – not often encountered in this kind of work.
Sleek, streamlined, sporty, Ferrari red. Wheels to take you places. The latest sports model in Car magazine? No, it’s a Shoprider Snappy electric wheelchair, but to Malcolm Lightbody of Somerset West it’s as desirable as any top of the range racing car.
Malcolm has Multiple Sclerosis, a condition which affects the brain and spinal cord. It damages the myelin sheath, the material that surrounds and protects the nerve cells, slowing down messages between his brain and his body. While MS takes many forms, for most people it is a slow and relentless slide into physical and cognitive disability. Malcolm has also had to come to terms with the fact that there is no known cure for MS – this is a life sentence. But it is one he bears with great fortitude, helped in part by a loving friendship and, in recent weeks, by the new wheels in his life!
Malcolm was diagnosed with MS in 1998 when he was 43 years old. Since then he has travelled a long journey investigating various cures and therapies, battling depression and coping with the loss, not only of his physical abilities, but also of the support of some family and loved ones. In the midst of his darkest times in 2006 he received an email from a fellow MS patient, Gail Keanly, who lives at Huis Marie Louw in Somerset West. Gail’s experience of the disease is longer and more severe than Malcolm’s and her wisdom and courage proved to be an inspiration for him. They began to correspond regularly and after two years they met for the first time when Malcolm came to Cape Town from Gauteng for the wedding of Gail’s daughter. The friendship blossomed during his visit and a few months later Malcolm also moved into Huis Marie Louw, which he describes as being a place of great compassion and care.
While both are wheelchair-bound, they are certainly not house-bound! Malcolm and Gail love to be independent and try to get out and about as much as they can. Trips to the local shops and to Somerset Mall are a happy feature of their lives, but both agree that the highlight of the week is the Wednesday morning outing to the Day Hospice meeting at Helderberg Hospice. Here they are part of a group of others living with long term illnesses like Motor Neurone Disease and cancer, but the time at Hospice is a time for them to be people, not just patients. “The Day Hospice is brilliant,” says Malcolm, “and the group members there have become like family to me.”
It was at Hospice that Malcolm’s need for an electric wheelchair was first noticed. Operating a manual wheelchair requires significant strength and effort, and can be a considerable physical strain for someone with MS. Sister Val Rens, head of Nursing Services at Helderberg Hospice, set about finding a suitable chair for Malcolm and was able to successfully negotiate the use of a chair owned by the Motor Neurone Disease Association. After a service and puncture repair, the wheelchair (plus crash helmet and knee pads!) was presented to Malcolm at a special ceremony at the Day Hospice. According to Sr Rens, “Malcolm’s face lit up like a Christmas tree” when he first took the control lever in his hand and the machine responded immediately, turning on the proverbial tickey with a soft whirring sound. “This wheelchair makes all the difference to the way I can get around and be independent,” declared Malcolm, “and now I can keep up with Gail, who’s been driving one of these for years!”
This story illustrates the special kind of care that Helderberg Hospice is known for, a care that encompasses the whole person and that aims to enhance life for as long as possible.
2011 is the year for weddings; for brides to walk down the aisle and become princesses. But we all know that every bride is a princess on her wedding day. Maybe the dress is hired and has no designer label, maybe the neighbour did her hair and a friend took the photographs, but every woman on her wedding day, royal or not, is radiantly beautiful in her own way.
And every wedding tells a story. Sometimes it’s the dream-come-true fairy tale story of a commoner who meets a prince, sometimes it’s the boy next door who gets his girl – and sometimes it’s what you do because it’s one of the last things you’ll do and you know it’s the right thing to do.
This is a story set in poverty. You may wish to hope, because many fairy tales have their beginnings in this setting, that this might be a rags-to-riches story, but you will be disappointed. The bride and groom both come from a low-cost housing area, where unemployment and crime are the ragged, ever-present neighbours in the treeless streets of row upon row of identical houses and blocks of apartments. The grinding reality of poverty is that it is frequently undergirded by disease, and for some, a disease without cure. At Helderberg Hospice we say that where there is no longer a cure, we have a special way to care, and sometimes that care includes more than just medication – it means helping to make dreams come true, even dreams of a beautiful dress of satin and lace…
Lorraine personifies the message that a diagnosis of HIV does not have to be a death sentence. First referred to Helderberg Hospice in 2002 as a patient with a poor prognosis, she has been able to maintain a good quality of health and life and has been an active member of the Hospice support group in her area. The relentless track of the disease meant that she had to go onto anti-retroviral treatment two years ago, but her compliance with the medication regime coupled with prudent lifestyle choices, has given her the opportunity to enjoy a level of health many would have thought impossible when she first came onto the Hospice programme. She has even been able to give birth to a daughter, who with the benefit of the State programme to prevent the mother-to-child transmission of HIV/Aids, is healthy and free of the disease. And also the reason for the wedding plans…
Lorraine’s partner of the last six years is Mervin and his story is a very different one to that of hers. He too faces a life-threatening disease, but one with potentially a very different outcome to HIV/Aids. TB can be cured but only if the patient completes the treatment programme of many months and takes care to live a healthy lifestyle. TB and HIV/Aids are sinister allies, with the latter making fertile ground for the former and it is frequently the complications of TB that cause death for the immune-compromised HIV patient. Mervin is a man who, like many, thought he could beat TB his own way and he repeatedly defaulted on his medication, to the point that the virus has become resistant to the barrage of drugs that seek to restore his ragged health. The file at the TB clinic that bears Mervin’s name has the terrible letters XDR printed boldly on it – Extreme Drug Resistant. The extent of Mervin’s disease is such that he can no longer live at home. He has been placed in a TB treatment centre in Cape Town where he awaits what will be the inevitable end of his life. After his admission there, Mervin realized that what he really wanted to do, more than anything else, was to be married to Lorraine and be the legal father to his daughter.
And so, a wedding was organized – family, friends and neighbours came together to make a day of special importance for this couple. Mervin was able to come home for the weekend; Lorraine had her hair done and donned the dress of her dreams. They became a prince and princess for the day, bound by their promises to love as long as they live.
It is remarkable that in all the time that Mervin gambled with his health, Lorraine steadfastly stuck with her life-giving regime of medication, good nutrition and careful lifestyle choices. One of the major differences in their lives is the role that Helderberg Hospice has played. Lorraine, as an HIV+ patient with an initially poor prognosis, was referred early on for counselling and support, but TB patients are not referred to Hospice until they are deemed incurable and are on death’s door. The care of Helderberg Hospice has made the difference for Lorraine. It is the difference between life and death.