Second Guessing – the angst of a Carer

When I gave my late husband, Mick, a pair of thongs (flip-flops) for Christmas I had no idea that they would become one of the most loathed objects in my life.

So much so, that three and half years later when Mick died from brain cancer, I immediately collected the thongs and hurled them into the rubbish bin. They were a gift given in anticipation of summer adventures, long walks and carefree beach days. Instead they became a symbol of my angst as a carer.

One of Mick’s first symptoms of brain cancer was a limp. I first noticed it on Christmas Day when he seemed to shuffle a little when we went for a walk. I thought nothing of it. Maybe he had strained a muscle running or was he just tired?

Over the next few weeks his limp on his right side became more marked. His toes fumbled as he tried to clasp the strap of the shoe. His thong kept slipping off. He started to squint with one eye. He had debilitating headaches. His balance became poor. He was nauseous.

Several weeks later Mick was diagnosed with aggressive terminal brain cancer(GBM).

The cancer was in the parietal lobe of the brain which controls and impacts many functions including right side mobility. If the cancer grew slightly or if the brain surgeon made a slight error when removing the tumour, Mick could become paralysed on his right hand side.

We were greatly relieved after the operation to discover that Mick could still walk, albeit with a slight limp.

I gently suggested that we buy him some new shoes. The thongs were a tripping hazard and slowed him down. They accentuated his limp. I was worried that he might fall and hurt himself. Even worse I was worried that he might fall carrying our toddler or soon to be born, baby.

Mick was affronted by the suggestion.

He had just undergone six hours of brain surgery and survived. He was feeling much better thanks to anti inflammatory and mood enhancing medication.

He was determined to do what he could to be a survivor. To beat the grim prognosis of living for only six more months or at best three years. He was not allowed to drive due to risk of seizures. He was about to undergo chemotherapy and radiation treatment. He would acquiesce to these facts but he would not wear practical sandals. Where he could, he was focused on being as normal as possible.

I understood how he felt. I wanted to support him in preserving his dignity but I was frustrated.

I talked him into considering a different style of sandal that was on trend and comfortable. A slide on sandal made by Birkenstock that did not require gripping with the toes. Unfortunately these were even worse than the thongs. After several attempts at wearing them Mick reverted to the thongs and I moved the Birkenstocks to the back of the wardrobe.

I was relieved when winter came. On really cold days lace up shoes, moccasins or ug boots were worn instead.

After eighteen months it seemed that the chemotherapy and radiation was successfully keeping the aggressive cancer away. Mick started to undergo rehabilitation treatment to work on his balance and mobility. The goal was for Mick’s brain to create new neural pathways to improve balance and mobility.

We saw improvements. We were cautiously optimistic. Yet we knew the odds.

I could still see the limp. It was always there reminding me of the shadow of cancer.

I remained on high alert watching Mick for signs of the cancer returning. Second guessing. Had there been an almost imperceptible shift in his balance, his speech or cognition?

I was always judging the risks. Would he be okay looking after the kids for a few hours alone?

I envied our friends who caught up with him in a light hearted manner without responsibility as a carer. They could just enjoy his company.

Months later it felt like Mick had started to be clumsier than usual, both in mind and physically. Was I imagining things? Sadly, not.

Soon after, a scan confirmed that the cancer had returned. We had run out of treatment options to prevent the cancer from advancing.

Mick  bravely tried to remain well as he faced more symptoms that were cruelly disempowering. He could no longer read or write. I wrote text messages on his behalf.

His limp and lack of balance became more pronounced. He did not seem to notice that he was walking with an uneven gait, standing and sitting lop-sided. He continued to wear his thongs and insist that he was okay walking around the suburb by himself. A nurse explained that it was not unusual for the patient to have no insight into their physical decline.

This was one of the hardest, most perplexing and distressing parts of being a carer. I could see the decline but Mick could not or would not acknowledge it.

There was nothing to be gained from highlighting Mick’s deficits to him.

Instead I turned to our family and friends to ask them to help and support us with making Mick’s last few weeks as comfortable and normal as possible. We would carry on routine activities and life as best we could for as long as we could.

I would not be second guessing for much longer.

Do you know someone who is a carer who might be second guessing and watching their loved one decline? How can you help? 

  • Ask the carer how they are.
  • Provide the carer with a few hours break or some light relief.
  • If you can see that the patient is declining, acknowledge the challenges and heartbreak to the carer. Don’t ignore the elephant in the room, acknowledge it.
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Related Post: No longer Equals – becoming a Carer

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