My mom is lying sedated and restrained. I don’t know where things go from here.

I’ve been here before. The previous recoveries were miracles and I don’t think you can ask for more than one or two of those.

How much damage has been done in this breakdown? A frail 79-year-old fighting like a tiger for three days until she passed out, only to wake and fight again. Hurting her hand and instantly developing a haematoma and crying from the pain while still fighting.

She has a heart condition and is a stroke risk. Surely she couldn’t have got through this unscathed?

Authoritative voices

Five years ago I was told to institutionalise my mom in a public facility and get on with my life. That is a direct quote. From a professor of geriatric psychiatry. An acknowledged expert. His view: vascular dementia with no hope of recovery — only stepped decline.

I said no. I suppose we were lucky. I understand psychiatrists have legal authority to carry out institutionalisation themselves. The referring psychiatrist was shocked at the diagnosis and apologised. I took my mom home in worse condition than she had been admitted two weeks prior.

I found someone via recommendation who would listen. A geriatric psychiatrist prepared to consider the differential — PTSD and pseudodementia.

The first miracle

My mom had been beaten black and blue during a home invasion. After returning from hospital, she had a panic attack, a heart rate of over 200, and became catatonic. Then hysterical. She was admitted into hospital and we got her back after witnessing a miracle of psychiatric medicine.

We had a good period as I helped my parents move house and hopefully move on. When they were in the new house and I returned home, the next breakdown happened.

I live in Johannesburg. My parents live in Cape Town. There is no one else to help. I flew back and began again, working with a psychiatrist and trying to recreate the miracle. But drugs don’t always work and different drugs may not work at all. We moved through cocktails and titrations — one antidepressant after the other. There were no miracles.

Instead we had hell. My mom developed akathisia — a horrific condition where she could not stop moving and paced for 48 hours straight before I admitted her to a private institution.

There my mom got her diagnosis from the professor. He never actually met my mom. He reviewed his assistant’s files. I asked him how much doubt the limits of science would allow. He said he was 100% sure.

The roar

Before the first breakdown and readmission to hospital, I held my mom as she sobbed.

Maybe most children think their parents are special, as parents do of their kids. But many people say that about my mom. She is the most quiet, gentle and caring person imaginable. As I grew up she cared for every old person in our family, visiting and helping where others forgot.

She was broken by the violence. She saw the intruders smash my father to pieces. Fractured skull, brain contusion, damaged retina — he has never recovered his taste and smell, nor his full eyesight. She continually mentioned how the attackers were inhuman. She screamed as loud as she could to call for help. Her cries got neighbours’ attention and limited the attackers to nine minutes of hell.

But as my mom cried, she also talked about how everyone had looked after my dad. And that they had to. He was unconscious and desperately needed attention. But my mom was badly hurt too. Her head was bleeding, her face and body battered. After the beating, an attacker had jumped on her face and chest after she had fallen to the floor. And when they left she called all the attention to help my dad, as she needed to.

But no one heard her silent whispered cry.

The whisper

I will never forget my mom’s voice over a neighbour’s cellphone as she cried about what had happened to my dad minutes after the attack. I sat in my study in Johannesburg on a Sunday night, helpless, and struggled to get words out. Then I called family and friends to get to my parents as quickly as they could.

At the hospital my mom and dad were each put in isolation. It was COVID protocol. My mom lay alone and worried about my dad.

I went to the airport as early as I could the next morning after a sleepless night. I was worried I would not be allowed to fly with COVID restrictions. I messaged my team. I got on a flight.

I stood outside the hospital and waited until I was finally escorted to see my mom. She lay battered and bruised alone while crying about my dad. I was allowed to hug and comfort her as we both wore masks. I was not able to see my dad in ICU.

Later, as I tried to comfort her again as she broke down, she talked about how no one ever listened. Even her old boss, who had put her desk near a door as she froze each winter. There was a lifetime of whispers until life called on her to scream for someone else. But still no one heard her.

Patterns and spirals

The spiral was dramatic. The first time you see that is horrific. The person you know and love becomes someone you don’t recognise. My mother’s psychosis screamed all the way from the ambulance into the hospital.

Getting my mom back after the first breakdown felt unreal. I accompanied her to therapy and we welcomed my dad back. She got me to organise balloons for the homecoming to a family’s apartment we were kindly lent. My dad began a slow recovery but was spared memory of the terror he had endured by amnesia. My mom carried that alone.

A carer was the assistant to the miracle. Chipo worked on my mom’s recovery and became my mom’s protector. One of the best moments of the last five years is captured in a video of my mom visiting her old garden after regaining strength. She sat laughing with Chipo as Amber, my parents’ dog, struggled to contain her joy at seeing my mom.

I worked on my parents’ house in the day, starting with my cousin as we cleaned their blood from the floors. For three months I cleaned, renovated and first tried to rent out their house. I packed a family’s memories of a beloved house my mom’s father had rescued and cherished. I worked in gaps as I met with my team and clients remotely.

I visited my parents each evening for dinner as their recovery grew. My mom told me happily that whatever happened, she would always cherish that. But she also desperately wanted me to have the family house.

She returned to the house for the final packing. She managed that well. She had kept her mom’s ashes to scatter with her brother when he visited. But there was no time left and she buried her mom’s ashes in the beautiful garden she had created and now said goodbye to. She was so courageous as she took me to have a quick ceremony with her as she said goodbye. But she cried again as she said goodbye to her mom and her parents’ legacy.

We chose a retirement village. I believed in the place my parents eventually chose but had left the selection to them. There are seeds to a disaster and this may have been one. While I hung back, I worry my mother chose my choice. I missed a whisper.

I got most of the moving process done and returned to Joburg to kick off the new year. The old house was not yet rented and I would return to get that done.

When my mom sat down after unpacking, the next breakdown hit.

Echoes

I got straight back on a plane and returned to my parents.

This time was different. There was depression with the anxiety. I think that it all hit my mom as she sat and was finally confronted by the rest of their life. It was a new house with a way forward. But it emphasised what was lost and the uncertainty of what lay ahead.

I accompanied my mom to therapy and started the search for the right meds. There was ongoing delusional anxiety. All the time with a core reality. My mom had been the manager of finances and making ends meet. She couldn’t see how this was going to work going forward. She saw dependence and impact on me. From there the anxiety spiralled and my mom challenged reality.

The therapist gave up. Or perhaps I gave up on him. The psychiatrist was amazing and tried to help me after hours as I battled to hold on to my mom and find a breakthrough medical regime.

My focus had shifted from renting to selling the house under financial pressure. I left each morning at 04h00, mixed work and renovation all day and got home to look after my parents that evening. Sometimes looking after my mom happened through the night. Finally the sale happened.

My mom fought the depression so hard. She asked me to accompany her to introduce herself to her neighbour. My parents’ isolation had continued after moving in as further COVID scares limited movement and they had no immediate neighbours. I was so proud of my shy mom as she gave a gift to her neighbour and came home. It was a desperate attempt to move on when nothing really was.

There were also flashback nightmares. I held my mom as she relived that night of unspeakable horror. The meds could never erase that.

Then the akathisia hit and no one could cope, including me.

As I sat with my heavily drugged mom at the care facility admission, I asked what she would like to do when she got back home and was well again. She smiled weakly at me and said, “Make some new friends.”

Hearing a whisper

“I’m not sure why there have been attempts at cognitive assessment with so much anxiety in play.”

My mom’s clinical psychologist from after the attack had recommended her new geriatric psychiatrist as someone who had helped disprove incorrect dementia assessments.

I can cope with reality. But I like it to be evident. The psychiatrist said that there was no definitive basis for a dementia assessment, nor was there the ability to exclude the possibility. That could be where we ended up. But the right thing to do was to get on top of the anxiety and depression first.

The clinical psychologist had said to me, “Doctors are experts on medicine, but you are an expert on your mom. They have a 15-minute appointment — you have a lifetime with her.”

The new psychiatrist worked through me, trusting my observations. And we began to get my mom back.

One foot in front of the other

I had begun to learn that you cannot get too many steps ahead in managing crises and it is almost impossible to manage more than one at a time. Some longer-term view is essential, but mostly you need to focus on the next step. It’s no way to live perpetually, but it is the only way when each day threatens the next.

My mom had a scare with a seizure. Luckily I was there. I carried her to the car and rushed her to the ER. And luckily we met a Paarl physician who listened and who looked after my mom. We didn’t know what had happened, but my mom survived another scare and hospital stay.

As we saw my mom progress, other medical challenges emerged. My mom struggled with bladder pain and urgency. It seemed to be an outcome from all the medication. It was debilitating and a source of anxiety and depression in itself.

Surgery was unsuccessful.

And then we hit another breakthrough. An undiagnosed complicated UTI.

Women tell me that there are few things as debilitating as a UTI. Research shows that undiagnosed UTIs are a substantial contributor to misdiagnosed dementia.

My mother made another leap forward after IV antibiotics.

There are periods of a history like this one that compress in retrospect. In reality it was months of hell. There were multiple doctors who missed the diagnosis and who also looked at my mom and concluded dementia. Those who helped concluded more surgery. I tried multiple meds, including from compounding pharmacists.

But there were slow psychiatric and medical wins. My mom’s saviour psychiatrist, a family friend doctor and, finally, the right urologist considered my research and we agreed ways forward. We finally hit on the right combination of antidepressant, antipsychotic and a limited amount of benzodiazepine support. The IV antibiotics and an off-label benefit of another antidepressant resolved the bladder sensitivity. A doctor jokingly remarked I deserved an honorary doctorate in pharmacology.

The professor had said there are no improvements with dementia. Only plateaus before further declines. He flat out refused a differential diagnosis. My mom showed us one.

During this time, I lost a business team that had taken 15 years to build. I needed help.

Help

Miracles seem to need angels. Chipo had been the first. The clinical psychologist the second. My mom’s old physician, who continued to see her despite a new specialisation, was the third. That physician did the MRIs that she concluded showed age-related brain state rather than any vascular damage. The new psychiatrist the fourth. The Paarl physician the fifth. Annalisa was the sixth.

In crises, affordability and time are the challenge. And probably what most people struggle with. Most people probably fail mostly because they just cannot manage affordability or time. I couldn’t, and so everything came at the cost of other things.

Getting my mom a carer was crucial to being able to get back to my business and life. Finding someone to take over being my mom’s advocate was crucial. Annalisa was that.

They say that we all need an advocate in complicated medical issues when we are unable to fight for ourselves. I had been that for my mom. I knew in reversed roles she would have been that for me. Very few of us are blessed to have that kind of person in our lives.

Over time, the retirement village would describe Annalisa as my mom’s biggest fan. There were other carers too. But Annalisa would fight for my mom. And my mom would fight for her.

Over the next three years my mom gradually settled into a new life. There were nightmares. There were days of debilitating anxiety. There was gradual tuning of medication. She has had a remaining tremor from the medication which makes it difficult for her to eat by herself. She is dependent on help and self-conscious. People have spoken to me as if she has dementia in front of her, as though she wasn’t there.

Meanwhile, she retreated and is probably the village’s biggest library customer and most regular walker, accompanied by Annalisa.

More angels

People have so much to cope with in their own lives. They have to prioritise. And they move on.

A client CEO and friend said to me in the early days of my parents’ incident, “This is hard. But be prepared, it is going to get harder. Right now others are there with you, but they are going to have to move on. And you have a long battle ahead.”

He spoke from his personal experience. A drunk pedestrian had fallen in front of his car. He told how even his wife could not continue to share the intensity of what he was going through for as long as he did.

People did move on. There were many amazing people who rallied to my parents in the early days. Who contributed to a rehabilitation fund. Who signed the petitions against bail for the one perpetrator they caught. Who visited.

But after a time visits grew less, especially due to the distance to my parents’ new house.

My assistant, my team member who stayed and helped me rebuild my business, and friends were the angels for me.

Setbacks

No recovery is all plain sailing. My mom had progressed so well and, when out on a visit to the shops with visiting family, fell on an escalator and suffered a huge cut to her leg. The blood thinner caused massive bleeding and the trauma began again. Surgeries, hospitalisation and a long recovery started. Drug-resistant bacteria and a haematoma complicated things. It was a miracle that my mom did not lose her leg. It was also a miracle that the ever-present PTSD and anxiety did not reclaim her. The Paarl physician was my trusted anchor.

Again I was flying in and out. I was awestruck at my mom’s fight. She had fought for so long. And here she was fighting again. She and Annalisa started slow walks again, beginning with just short walks to the end of the road. It was a huge setback from her 3km walks to the nearby dam and back. After the second breakdown I promised my mom she would get back there. She had done so and now she was starting again.

My Dad

My dad does not hear whispers. He was spared the trauma of their attack through amnesia. Instead, his trauma was mostly related to my mom’s.

He battled to understand her difficulties and pain. He has had to be there when I and the carers are not, especially through the night. It is a lonely and frustrating place.

He does not understand PTSD. He rages against it. And it meant a lonely and frightening place for my mom.

Now

I’ve just flown to Joburg and back for a meeting and got back to my mom after 24 hours away. When I left my mom was screaming as she fought the insertion of a feeding tube. She cried at me that they were torturing her.

It was hell seeing her like that. The attending staff thought they were dealing with a dementia patient who had screamed and fought for three days. Now if she didn’t get medication and food, her body would start to shut down. Her kidneys were already showing signs of strain.

That morning I had asked for her doctor to be replaced. On the Monday after admission I agreed my mom’s medications with the weekend doctor. As I held my mom down on the Monday morning I managed to get in increased amounts of two of the key drugs. She ate lunch by herself that day sitting in bed. The staff couldn’t recognise her from the person from the night before. I went to my parents’ home to give my dad a chance that afternoon. When he returned he told me my mom was speaking gibberish again. By the time I got there, she was hysterical and I had to hold her down. She would now not take any pills. I typed meds into my phone screen with one hand while holding my mom down and asked a nurse to phone the doctor to authorise an injection. I held her until it was given and she passed out.

When I walked in on Tuesday morning I could hear my mom screaming. She was alone in her bed. There was no one looking after her. Her newly assigned doctor walked in and began arguing with me immediately. He would not hear that I had agreed with the weekend doctor to go back to my mom’s previous meds with an antipsychotic. He removed those and would not talk to me again until he got hold of my mom’s psychiatrist. He came back having agreed a different antipsychotic on the back of his incorrect understanding of the previous day. I held my mom down until the injection took effect and knocked her out. She was threatening suicide and fighting like crazy. In a brief period where I was asked to leave for a nurse to hold her while another took blood, she lashed out, hit her hand on the bed and in minutes a massive haematoma rose up because of her blood thinners.

During the day, I sent emails to the psychiatrist and found that my mom’s doctor had told him my mom had become more agitated after the Monday morning meds. Further, he misunderstood what pills my mom had had.

I have found that advocacy involves lots of time in hospital wards stalking doctors doing their rounds. When I spoke to the doctor on his afternoon round he became angry again. He shouted at me that my mom should be in a psychiatric ward and he was not a psychiatrist.

The Wednesday morning was worse. My mom was now heavily sedated, refusing food and medication. The doctor took me through her test results. At least he did that.

A further shouting was the final straw. When doctors aren’t interested in facts I think patients’ lives are at risk. I asked a sister the process to replace him and she offered to talk to him. She came back having managed to get his agreement. Another angel.

My mom’s old physician moved in quickly. The treatment didn’t change but the attitude did. I continued to sit with my mom and try to get fluid and meds into her. I managed the morning meds drop by drop.

I was leaving for Joburg after lunch. One of my mom’s carers had arrived to stand in for me when I left. I have found that hospitals rescue those in severe need, but sometimes people like my mom just survive them. Having someone who knows her there to advocate for her makes an enormous difference. Telling staff that she was reading and walking and a normal person six days ago can make a vast difference to how she is treated.

People see what is in front of them. When they see someone who is old and not making sense, they see dementia. When they see a young soldier returning from war with the same symptoms they see PTSD.

I’ve always been prepared to consider and deal with dementia. I’ve organised the MRIs to check and agreed prophylactic medication. But I have refused to accept a default diagnosis with no differential. Imagine it was you or someone you love – written off and denied recovery. Imagine there was no one to tell people that the person they saw was not you. Or imagine there was but no one would listen.

My mom’s brain is ageing. I do not know how this affects her and will over time.

As I travelled to the airport I got a call from the hospital. I had left the carer in tears as she helped the staff with my screaming mom as they inserted the feeding tube. As they took my mom to X-ray the tube, the carer passed out from high blood pressure. My mom was going to have a night alone and scared.

Last night I battled to concentrate on my meeting prep as I contemplated my mom after another setback, perhaps this time with real damage from a stroke. She had fought so hard that even as I held her down she would pass out briefly from the strain before fighting again. I had another bad night’s sleep as I imagined dealing with my mother disabled going forward. I felt I had run out of rights to ask for any more miracles.

The meeting went well and I raced back to Cape Town. I had a call with the psychiatrist in the car, corrected the week’s treatment history and we agreed a way forward. He emailed the Paarl physician immediately.

Hope

When I walked into the hospital, the nursing staff were smiling. The sister told me to go and see my mom. When I stepped into my mom’s hospital room, she lay there weak and tired. But peaceful and cognitively aware. She smiled when she saw me.

The nurses told me they didn’t recognise my mom from the person who had been brought in. I showed them photos of my mom after she had been assaulted. They were horrified. They could now see what had been whispered. My mom needed help. She was desperately crying from the terrors of PTSD, not from the irrecoverable ravages of dementia.

The saviour physician then phoned. My mom had a UTI. The culture results had come back. Two different bacteria, one antibiotic resistant.

I don’t know how my mom will recover from this. I have learnt we have a system of reserves we draw on. When those tanks empty, we fall in on ourselves. My mom’s tanks are always close to empty. Psychosis is when the mind’s protective mechanisms overreact and it becomes difficult to reach through and pull the person back. I have seen the power and the limits of psychiatric drugs.

I hope my mom has some fight left. She turns 80 in two months’ time. I have seen a shy, gentle person dig deep over and over again as I have encouraged her. She has been walking over a kilometre in the morning each day in response to my encouragement. The first time she managed that after the leg injury, she smiled into the nightly video call with pride and said to me, “Ask me how my walk went.”

I hope she can rebuild some reserves once again.

—

** There were so many more angels along the way. From the neighbours to the friends to the colleagues and the clients. Some like my mom’s nurse neighbour have played a recurring role. Others just said a kind word at the right time.