The silent destroyer

Out of seemingly nowhere, someone can suffer a stroke with devastating consequences. GEORGE LOUW takes a closer look at this condition, which can destroy lives

Strokes, together with hypertension, are known as the silent killers. Hypertension can cause strokes, which, more often than not, strike without warning. But not all strokes kill. Some recover, but many stroke- survivors are left significantly disabled, and often an extreme burden to their loved ones. This is when a stroke becomes a silent destroyer. You are alive, but you are severely damaged. And your spouse is severely burdened…

I recently read an article in the Malawi Medical Journal titled: “The Challenges and Experiences of Stroke Victims and their Spouses in Blantyre, Malawi” (June 2019). The article started by stating that strokes were the second biggest cause of death and disability in the world.

It continued that stroke survivors experienced various challenges due to physical and mental impairments, which also placed an increased burden of care on their spouses.

The incidence of strokes has declined in high-income countries, but remains a significant burden in low-income developing countries, especially in sub-Saharan Africa, where the disability is compounded by the unaffordability of professional support, caregivers, medication and supporting equipment.

From the perspective of stroke survivors, the major issues described were weakness (usually hemiplegia or hemiparesis – affecting one side of the body) and incontinence of the bladder as well as the bowel. The need for adult nappies was expressed by a stroke survivor in terms of cries of desperation. Affordability was a major issue.

However, the issues raised by spouse-caregivers were far more extensive. Over and above the significant impact of having to help with all activities of daily living (which include washing, dressing, eating) along with the responsibilities previously delt with by the affected spouse, the task of managing faecal and urine incontinence was soul destroying.

On top of this, the spouses were often subjected to cognitive issues: where the person with the stroke struggles with understanding and self-expression, often leading to outbursts of anger, particularly if support management and medication was not affordable.

So, until some kind of rhythm and mutual understanding is reached, life is a living hell for both the stroke survivor and spouse. And even when such a rhythm is reached, life remains a challenge.

The article, particularly within the Africa context, got me wondering. What support is available in South Africa for stroke survivors? Is it adequate? Is there a broad enough national support footprint? Affordability is almost a no-brainer. If the state cannot assist, these persons are left to their own devices.

So, as a point of departure, in order to see what the state-of-the-art services entail, I asked two professionals who work at the Netcare Rehabilitation Hospital in Auckland Park, Johannesburg, for their experiences.

Trinesh Baroon is a physiotherapist and Daniella Winer is an occupational therapist. Both work extensively with stroke survivors and are passionate about their work. Trinesh describes it from a physiotherapy perspective:

“Usually we get a variety of functional levels within stroke patients. If there is severe disorder of consciousness, constant care, preferably in a placement facility, is required. On the other hand, a Transient Ischaemic Attack results in extremely mild symptoms with the survivor usually up and about, walking around.”

“But mostly, we get the traditional hemiplegic patients who experience significant weakness on one side, usually with cognitive impairments. I will be focusing on the latter – the most common type,” he adds.

“In terms of mobility, most patients start out fully dependent for all movements as their brain is still recovering from the sudden trauma and has been weakened from lying in bed for weeks.

During rehabilitation, which normally takes six to eight weeks, we gradually improve strength in functional ways to achieve independence with in-bed mobility, then progress into maintaining balance in sitting, learning to stand up and eventually to walk.”

“Most patients end their in-patient stay by walking with an assistive device, then further improve as an out-patient. However, many patients do walk out of their in-patient stay unaided; especially younger patients or patients who were very active prior to their stroke,” Trinesh explains.

“Many discharged patients generally can walk in or around their home with assistance or with the use of a walking aid. They can also assist in buying groceries by using a trolley instead of a walking aid. Some can even manage stairs as long as there are handrails to support them while stepping.”

“Often, however, in bigger malls or outdoor areas that require them to walk more than 100 metres at a time without sitting, they are still dependent on a wheelchair as their main source of mobility, often being pushed around as they lack the balance and endurance for longer distances and uneven terrain; both of which (balance and endurance) are then targeted in further out-patient therapy,” he continues.

“For patients who remain in their wheelchairs due to an inability to walk, some learn how to self- propel their wheelchair using the unaffected arm to propel and the unaffected leg to help steer. However, some struggle to accomplish this level of independence with a wheelchair due to the coordination required to propel, steer and keep their balance, all at the same time,” Trinesh adds.

“Very few patients who do learn to self-propel are able to do so outdoors over uneven terrain, or on inclines and declines. As a result, they are dependent on someone to push them,” he concludes.

Daniella paints the broader picture: “Stroke patients typically present with hemiplegia, which is paralysis or weakness of one side of the body. This often comes with changes in tone, swelling and pain in the affected arm and leg. Following a stroke and these changes to their body, a person often needs to relearn how to do basic self-care tasks on their own, including feeding themselves, doing their own morning grooming, dressing, washing and going to the toilet.”

“Occupational therapists are key players in teaching them techniques, retraining their affected arm and hand, or prescribing assistive devices, which help them gain more independence in these activities. Additionally, a person often requires some assistance from a carer or loved one to do these activities effectively, and often home adaptations are needed to make them more wheelchair accessible,” she adds.

Equipment and assistive devices

A big consideration in these situations is the financial strain of getting therapy, organising adaptive equipment and adapting the home. There are certain types of equipment that can be paid for through medical aid. But, adaptive equipment is expensive and often even medical aid isn’t enough to cover what is needed. When only some have access, it poses a challenge to many stroke patients.

Specific wheelchairs, prescribed and measured by a trained therapist, are important for stroke survivors as a generic wheelchair can cause negative, long-lasting postural effects; hinder their ability to push themselves; and place strain on carers when getting wheelchairs in and out of cars. The more specific the wheelchair though, the higher the cost, which is a challenge many find themselves facing.

Burden of care

The level of assistance that someone needs following a stroke differs depending on the severity of their stroke and the resulting loss of physical function. When someone requires more assistance, the burden of care increases, placing more strain on families.

A designated carer is recommended to assist them, but often the financial strain of this is significant, resulting in family members often taking on the role as carers. This, in turn, places strain on familial relationships. It is a common challenge, which needs to be addressed for people in this situation.

Bladder and bowel management

Strokes can affect a person’s continence owing to the changes in muscle tone. It is vitally important that people are assisted with setting up bowel and bladder regimes to manage this so that it does not hinder their ability to participate in their usual social interaction, or prevent their return to a work setting (if this is appropriate).

So, even in state of the art rehabilitation settings all is not ideal. Money is a huge factor – equipment and medication do not come cheap. Caregivers cannot be afforded and more often than not the burden falls on the spouse. The spouse takes on the role of carer, and when there are cognitive issues present, the role of parent as well – a very schizophrenic mental and emotional state.

Techniques can be taught, but emotional resilience and perseverance must come from within. And these often compete with fear, anxiety and depression. Carer fatigue sets in, that can pull the spouse-carer-parent into a self-destructive funk; this probably needs greater psychologic support than the person for whom is being cared…

If we now move this scenario to an urban shack or a rural traditional home, matters get worse. But in a way, perhaps better too. For people with very little know the value of community – of reaching out and sharing burdens.

It is as we accumulate wealth that we start erecting walls. So (philosophically), the worst off are those who are wealthy enough to shake off community, but not rich enough to afford the needs of care.

Be that as it may, QASA has a motto: “Do not text and drive, we do not want new members.” Perhaps the Heart and Stroke Foundation of South Africa could consider: “Watch your diet and blood pressure, we don’t want new members.”

Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, chose a career in health administration.

The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years.

Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.


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