Being a caregiver broke my spirit

Aisha Aziz, 34, was the primary caregiver to her mum and watched her slip away. The experience left her hollow and withdrawn until she sought help. She explains why caregivers, too, need help.

"At the beginning of this year, I decided I needed to change the way I was living. I was aloof and depressed. I had hit rock bottom, from a bubbly positive lady to a despondent who found comfort in food.

Two years ago my mum passed away after years of being her primary caregiver. Unknowingly, it had taken its toll and I was feeling the effects months later. I needed a new way.

This need for change made me join Faraja Cancer Support Trust as a volunteer.

It had not crossed my mind that my caregiving experience and loss of my mum had left a deep wound, which needed healing.

She had died on my hands after first being diagnosed with breast cancer.

IN DENIAL

This is where it began. I recall it was a day in October 2013 when she called me and told me that she had a coloured discharge from one of her nipples.

Being in the medical profession, I realised this was not good news and I advised her to visit our family doctor for a check-up.

After an ultrasound and a lumpectomy, they discovered she had the aggressive HER2 positive type of breast cancer and had to go through a vasectomy, chemotherapy then radiotherapy.

I was in denial because we did not have a family history of cancer and I didn't want to accept that this was happening to my mum. This is when my wound started developing.

My parents were living in Mombasa, and unfortunately, there were no cancer centres then. I asked her to live with me in Nairobi as she underwent her chemotherapy. It was reassuring that she would be close to me.

I was newly-wed and she was hesitant. And besides she had my two young brothers to take care of, but I managed to convince her.

NOT A BURDEN

My caregiver journey started as soon as she joined me. I would accompany her to hospital; cook her meals as per the nutritionist guide; ensure she takes her medications on time, and spend time with her talking about everything and anything.

It was not easy balancing a new marriage and caregiving, but thankfully my brothers and dad would travel to Nairobi often to help me out.

She completed her radiotherapy in June 2014. But two months later she started complaining about back pain.

It was confirmed that the cancer had spread to her backbone. That meant we had to start the cancer treatment from scratch.

This was devastating for both of us. I had to watch my mum go through the painful experience again.

One day she broke down because she felt she was on the way of my marriage. It was heartbreaking to see her in tears.

What she didn't know was that I was happy taking care of her when she was not capable of doing it herself. I loved her and I could have done anything for her.

A year later, and her treatment done, she went back to Mombasa and would travel to Nairobi once in a while for check-ups. I was pregnant by then.

MEMORY LAPSES

I called mum one day inquiring about a recipe, something I used to do because she was an amazing cook. This time though she could not remember the recipe. That was a shock to me.

After several incidences, I noticed my mum had memory lapses and she would often complain of severe headaches that ordinary pain killers could not treat.

I travelled to Mombasa with my four-month-old daughter to be close to mum.

We were back to the hospital after mum had a seizure and this time her illness was grave. "Your mum has brain cancer and it's not good," the doctor told us.

Thankfully, the doctor was real with us. He told us she had six to eight months to live. To say I was devastated would be an understatement.

ASSISTANCE

The aim was to reduce the tumour and we decided as a family to have her travel to India for an intensity-modulated radiation therapy (IMRT), which was not being offered in Kenya.

Since I would not travel with her, I was worried and constantly called her.

Three weeks later my mum returned home in a distressing state, she could not walk or do anything for herself. I knew I had to stay with her, which I did.

Her condition and that of me having a young baby made caregiving more complex. Fortunately, two of her sisters helped me out and made the journey easier.

One day while feeding her, she said: "Aisha, when people feed each other, that's how they get to love each other more."

I recorded it so we would listen to it later and crack up.

LAST MOMENTS

We had our fun moments of selfies and funny recording. We both cherished every minute, maybe because we knew it would come to an end soon.

I watched her slip away while holding her hand. Yes, I was told months prior that this was to happen, but when it does happen an excruciating pain hits your whole being.

A month later I moved back to Nairobi. My wound was now enormous but I thought I was strong enough to deal with it on my own.

I was wrong and unintentionally my husband felt the greatest impact of my denial.

It was at Faraja that I came to terms with what was afflicting me. I went through counselling this year and learnt that I had bottled up the pain, pretending that I was fine when I was shattered inside.

We need to accept that caregiving is not an easy journey and there is nothing wrong with going through counselling and asking for help.