RETIRE IN STYLE: Dealing with unexpected health emergencies that can shatter retirees’ plans

Social worker and patient counsellor Elana Botes believes it’s nearly impossible for patients to prepare for a serious diagnosis: “Practically, yes, but emotionally it can completely change the world as you know it,” she says.

This is particularly significant in the Garden Route: “Retirees move here because they dream of a healthier, more peaceful life, imagining walks on the beach, family visiting, travelling, gardening and finally having time to enjoy the life they have worked so hard for.

“Then suddenly they are diagnosed with cancer or motor neuron disease, or need a major operation such as a hip or knee replacement. Even though the latter is not life-threatening in the same way as cancer, it can still be emotionally disruptive because it affects independence, mobility and the ability to enjoy an envisioned retirement lifestyle.

“For some, it feels as though their retirement dream has been interrupted, even shattered. Instead of planning holidays, their lives suddenly revolve around doctors’ appointments, scans, treatment, rehabilitation, side effects, pain and uncertainty.

“There can also be a sense of isolation. Their children may live in Cape Town, Johannesburg or overseas. Suddenly the people they need most may be several hours or a flight away.”

Grief for what’s lost

Botes says the diagnosis is not only about the condition itself. Patients are grieving the life they anticipated and everyone responds differently. Some become extremely practical, asking about what happens next, whereas others withdraw or become fearful, struggling to accept what is happening. There is no single “correct” way to respond.

“You can’t fully prepare emotionally for a serious diagnosis. What you can do is build a strong support system, talk openly with your family, ensure your practical affairs are in order, and know who you can turn to when things become difficult.

“It’s okay not to be strong all the time. Allow yourself to ask for help,” she says.

As patient counsellor at Eden Oncology, Botes has supported patients and their families for 30 years.

“I’ve had the privilege of walking alongside many people during some of the most vulnerable moments of their lives – from diagnosis and treatment to recovery, chronic illness management, rehabilitation, recurrence, end-of-life care and bereavement.

“Chronic illness care has taught me that there is no such thing as ‘just a patient’. Behind every diagnosis is a person with a family, a history, hopes, fears, relationships and dreams.

“Supporting the human being behind the diagnosis sometimes means counselling a patient, helping a family to communicate or assisting with practicalities such as ­transport, accommodation, rehabilitation planning or financial concerns. Sometimes it simply means being there when someone is frightened.

Presence and listening

One of the greatest gifts is not false reassurance, but presence, Botes says. “I don’t know exactly what lies ahead, but I will walk this road with you. That, for me, is the essence of psychosocial support.”

So, what is the best way for family members to empathise, and how does proper psychological support pave the road to recovery? “The most important thing families can do is listening without trying to fix everything. Often a patient doesn’t need to hear that ‘everything is going to be fine’. They need someone to say: ‘I can see you are frightened. I don’t know exactly what lies ahead either, but I’m here and we will take this one step at a time.’

“Family members are often also frightened and, not knowing what to say, may encourage the patient to ‘stay positive’. Though well-intentioned, this could make a patient feel that they aren’t allowed to be scared, angry or sad. Patients need permission to have bad days.

Psychological and psychosocial support can make a significant difference. Medical conditions affect more than the physical body. They also affect relationships, finances, independence, family roles, mobility, identity and sense of security.

“Talking to somebody outside the family is valuable because the patient doesn’t have to worry about protecting that person from their emotions. It creates a safe space where fear, frustration and grief can be expressed without judgement.”

Botes says patients do question what they could perhaps have done differently, and this can have a significant emotional impact. 

“I often encounter guilt,” she says. “Patients ask: ‘Was it because I didn’t exercise enough? Did I eat the wrong things? Should I have gone for that check-up sooner? Did I do this to myself?’

“We need to be very careful here. Although lifestyle and early detection can influence the risk of some illnesses, conditions such as cancer and neurological diseases are complex. Genetic, biological, environmental and lifestyle factors are involved, and often we cannot explain why one person develops a condition and another doesn’t.

“A diagnosis can also have enormous practical consequences for the whole family, such as medical expenses, transport and accommodation requirements, loss of income, changes in household responsibilities, rehabilitation needs (in the case of joint replacements or neurological conditions) and concerns about the future.

“For older patients, loss of independence can be particularly difficult. Someone who has always been independent may suddenly need their children for transport, finances or personal care.”

All about teamwork

Botes points out that an oncology patient counsellor is part of a multidisciplinary team – it is not work that can be done in isolation. 

“I refer patients back to the medical team when concerns need ­medical attention. I may recommend support from psychologists, psychiatrists, counsellors, palliative care doctors or other professionals.

“It is important to recognise the limits of your own role and to bring in another professional when a patient needs specialised psychosocial support or medical intervention.”

She also emphasises that recovery is rarely a straight line. A patient can appear incredibly strong during treatment or rehabilitation and then struggle emotionally afterwards. Another may initially be completely overwhelmed and, over time, discover an incredible resilience.

“I have seen people find strength through their families, friendships, faith, support groups, humour, rehabilitation milestones, or simply having somebody walking alongside them.

“Psychosocial support isn’t necessarily about making somebody ‘positive’. Sometimes it is about helping a person regain a sense of control over a life that suddenly feels completely out of their control. Sometimes the most important thing we can do is simply sit with someone and say: ‘You don’t have to go through this alone.’”

Losing the battle is hard in her line of work. “After all these years in oncology care, I have lost many special patients,” Botes says. “Although we have professional boundaries, that does not mean we don’t care. We are human, too.

“Every loss reminds me that my role isn’t always to cure or fix. Sometimes it is to help somebody live as well as possible for the time they have, support their family, assist with dignity and ensure that the patient doesn’t feel alone. I have learned that some of the most meaningful work happens when we cannot change the outcome. We can still change the experience.”

Support for the vulnerable

LeeAnne Whitfield founded The Care Agent to provide compassionate care-
giving services to families with elderly or vulnerable loved ones in Knysna and Plettenberg Bay.

“I have been the director of The Care Agent since inception in 2021, and in my experience, the most common illnesses for over sixties are strokes, diabetes, cancer, blood pressure or heart-related illnesses and different types of dementia. These patients make up about 60% of our clientele; sadly, this figure appears to be rising.

“When a person is diagnosed, keeping them stimulated is extremely important – we are running a programme coaching carers on different ways to stimulate the four main parts of the brain.

“Practical advice is to get into and keep a stable daily routine. If possible, introduce a carer or companion early. The person will fear change and become difficult at certain times of the day. After initial resistance, it will be a huge relief to family members.

“Changes in routine can be interpreted as trauma, so even outings will become difficult. Anxiety, stubbornness, anger, non-­cooperation, repetition, forgetfulness, ­physical instability and personality changes are expected.

“Consult with a neurologist for medical assistance, as well as a physiotherapist and occupational therapist. The decline rate differs from person to person. Good diet, fluid intake and stimulation are extremely important,” Whitfield says.

Assistance at a glance

A serious medical diagnosis mostly comes as a shock to 60-plussers, who are now suddenly forced to change their retirement plans – a future looking much less rosy. Everyone’s path is different, but needing assistance with practicalities like transport, accommodation, rehabilitation or financial concerns becomes a reality.

On the emotional front, oncology veteran Elana Botes believes the best support you can give is your presence, rather than false reassurance: “Acknowledge the fear, uncertainty and disruption,” she says.

In summary:

• There is no single, correct way to respond.

• Allow yourself to ask for help.

• It is okay not to be strong all the time.

• Patients need permission to have bad days.

• You don’t have to go through this alone.

• If not in control of the outcome, you can still change the experience.

• When dealing with families of those diagnosed with dementia, care expert LeeAnne Whitfield says different types of dementia affect 60% of her clientele and the figure is rising.

• Practical advice includes:

• Stick to a stable daily routine.

• Keep the patient stimulated.

• Introduce a carer early – it will take time for the patient to get used to their new companion.

• Good diet, fluid intake and stimulation are extremely important. DM

This story first appeared in our weekly DM168 newspaper, available countrywide for R35.