About eighteen months ago, my dad had a stroke. Mum heard a loud thud in the kitchen when dad suddenly collapsed. He was rushed to emergency. The initial suspect was arrhythmia – an abnormal heart rhythm. But there were certain things about dad’s condition that made the doctors suspicious of something else: like why he had blacked out. So they ran numerous tests on him: blood tests, CT scans, MRIs, echocardiogram, angiogram, and ultrasounds. We knew it was serious when he was assigned a cardiologist, neurologist and neurosurgeon.
The MRI showed a large brain tumour on the left frontal side of dad’s head
Tests also showed some odd looking spots in his bowel and liver. The spots and brain tumour were potentially cancerous. Further tests, ruled out the spots in his bowel and liver. But there was no way of ruling out the brain tumour without surgery.
It’s funny, but the gravity of the situation hit me when the neurosurgeon requested a family meeting in a special room with a translator (English is my parents’ second language). It could have been a scene from one of those medical dramas. One of the most helpful things we did was to write down all the questions we had before that meeting. No matter how silly the questions seemed, we went through them one by one with the neurosurgeon. We asked the question again (and again) if we didn’t fully understand the answer.
The odds were grim
If the brain tumour was cancerous and it wasn’t removed, dad could die. If it wasn’t cancerous, and wasn’t removed he could die, as it was pressing heavily on his brain. There were also risks and complications with a craniotomy (brain surgery by opening the skull). Although the surgeon would remove as much of it the tumour as possible, there was a chance not all of it could be removed, or that the tumour could be bigger and more invasive than expected. If it was cancer, dad would then need radiation therapy or chemotherapy afterwards. Other risks were blood clots or bleeding in the brain, brain swelling, coma and of course death.
There were also risks that he would lose function in his body and mind, the extent of which we could not know. The left side of the brain is responsible for controlling the right side of the body, and tasks to do with logic and reasoning such as number skills and maths, analytic thought and language. Dad loved science, maths and politics.
It was a terrifying time for my parents
Mum cried often. They had been married for more than 40 years. Dad was his sensible, logical self, more worried about mum. He told us he wasn’t scared to die. He wanted us to take care of mum. I wondered what life would be like for a logical man if he lost his logic and reason.
Thankfully the operation went well. The tumour was removed and it was benign. After a week in hospital dad was allowed home, with lots of medications: for preventing seizures, blood thinning, blood pressure, cholesterol…
The relief of the operation was immediately followed by concern and anxiety about dad’s recovery. We were told it could take months for him to recover. Although it seemed like he had not lost much physical control of his body, we weren’t sure if he’d lost any of his memory or mental capacity.
It was clear that the man who went in to the operation was not the same man who came out
The first few weeks crawled by. It was clear that the man who went in to the operation was not the same man who came out. At first, it was a struggle for dad to walk again, the surgery having affected his balance and coordination. He needed help and a walking frame to walk metres at a time.
For the first three months, dad was extremely sensitive to light and sound, so he preferred to wear sunglasses and stay in his bedroom with the curtains shut, all day. He didn’t want to see any visitors and would sometimes scream at them to leave. My once patient dad was now easily agitated and angered. Dad told us later, that he didn’t recognise some of his family or friends – he didn’t remember all of his grandchildren. I wondered if there were times when he didn’t recognise me. I can only imagine how scary and frustrating it would have been for him to have family and friends visit and encourage him to get well, only to think they were total strangers invading his home and privacy.
Mum found it especially difficult
Here was a man who looked like her husband, but didn’t act like her husband. He could be irrational and temperamental like a child in one moment, then suddenly retreat in silence for long periods.
He wouldn't eat or take his medicine
He didn’t want to eat. Didn’t want to take his medications. He was depressed, had lost motivation, lost hope. Sometimes he was teary, but couldn’t express why. A once articulate man, dad would now start a sentence only to forget the words he wanted and hit his hands feverishly against his head in despair, trying to rattle the words out.
Dad thought we were conspiring against him
He was suspicious of any conversations occurring without him in the room, or any whispered voices. Maybe we were putting things in his food, or planning to send him away. One day he wanted to wear long flannel pyjamas in the middle of the sweltering summer. He had numerous pairs, but they weren’t right. My brother brought a few of his pairs over. But they had to be new pyjamas, of a certain cut and colour. We couldn’t find a pair at the local shops and promised to look for some the next day. Dad wept and said we obviously didn’t love him.
His short term memory was like a broken record player
Later on, dad recalled that his long-term memory was crystal clear, but his short-term memory was like a broken loop that kept on repeating again and again: a faulty record player. At times he thought he would go crazy because it wouldn’t stop repeating the same sequence. It was worst when his memories and thoughts were dark.
Mum felt like she was living with a stranger
Mum was living with an unpredictable stranger. She was scared to leave dad by himself, let alone leave the house. Her day revolved around administering his medications, meals, physical care and rehab. She wouldn’t admit it, but I think mum was feeling depressed too. Would dad get better? How long would it take? Would she ever get her husband back?
Encouragement and reinforcement from family did little to help dad
We soon realised that the only people whose opinions he trusted and listened to were his neurosurgeon, neurologist and GP. The check-ups with these amazing people were most helpful and reassuring. They asked him simple questions and tasks that helped them to measure his progress. Importantly the appointments relied on discussion with family members to assess dad’s progress, and also how the family was coping. Our questions and feedback was always encouraged and carefully considered. With their confirmation that he was making good progress and encouragement to continue his medications and rehab, dad regained his motivation. And when he had a setback, we would remind him of his doctors’ words.
The doctors also connected mum and dad to local community health and social services, like occupational therapists, physiotherapists, speech therapists and respite care. Although mum and dad didn’t use all of the services, it was a comfort to know that they were available.
It took more than 6 months
It took at least 6 months before we felt like we were starting to get dad back, and a year before he felt comfortable and confident again. That milestone was one we celebrated gratefully.
If you are caring for a loved one after a traumatic health event like a stroke or heart attack, it’s also important to find support for yourself, like counselling for your mental health and well-being. It’s OK to ask for help. You need a support team around you, and your specialists, GP, local community health services and council services are all great supports.
Inspiro provides support
Inspiro’s counsellors support people who are feeling isolated, who are dealing with loss and grief, or who are feeling anxious and depressed and feel they have little control over things. Our highly trained counsellors are client centred and use a range of evidence based strategies and treatment. Inspiro is committed to providing a high standard of service where clients are welcomed and respected.
Inspiro Community Health offers occupational therapy, physiotherapy, exercise physiology, speech therapy, community nurses, and counselling to help people recover from stroke, heart attacks and major accidents. We also run a Stroke Support Group, and Communication Speech Therapy Chat Group for people who have had a stroke and experience communication difficulties as a result.
Call us on 9028 0153 to discuss.