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Macmillan guest post #6: Carers Week 2018: 'Joy did emerge and, when it did, it was overwhelming

As a young child, I always thought I would protect my loved ones if I needed to. This was more out of a misplaced confidence that I was a superhero or that I had the same gymnastic fighting skills as Jackie Chan as demonstrated through his 1980s movies. Then, I grew up and the need to physically protect my loved ones diminished, though it didn't disappear altogether. I came to realise that my parents were there to protect me, not the other way around, and I didn't need to worry about coming to their rescue as much as I thought.

As I grew older, my parents also grew older and that instinct to protect crept back, but not so much based on physical support. That protection was focused more on the fact that I saw and understood the weaknesses and challenges that my parents faced, which I didn't necessarily see as a self-absorbed youngster. So, the ability to somehow repay them in thought, action or deed for all the things they did for me was important.

When lung cancer struck my mother, that desperate aspiration of protecting her became more relevant than ever. Whilst I felt helpless in the fact that cancer had already permeated to the core of her existence, the aim of helping her as much as possible to deal with the disease was the only protection I could offer. Caring for her was my manner of protecting her.

I am thankful that in caring for my mother, I did not need to support her in her everyday physical needs. We were both fortunate that this didn't involve the physical care that might jeopardize the bond and privacy of a son and mother. She was able to look after herself to a large extent, until her final few days. Although, as time went on, her lungs would stiffen and breathing would take its toll, and normal tasks such as walking up a flight of stairs would become a laboured effort.

When my mother was moved to a hospice, looking after her did become much more physical. By then she had weakened significantly, and drawing each breath was a huge ordeal for her frail body. So, my brother and I took turns to feed her, give her water, and just generally make sure that she was as comfortable as possible, considering the circumstances. I recall she made a comment that she was grateful for our help and we joked that she had fed us as children and this was just us repaying the favour.

Aside from the times in the hospice, caring for my mother manifested itself in other ways. Some days it would be taking her to hospital to sit with her during her chemotherapy, and other days might involve translating prognoses. There were days when caring just meant turning up for a chat and (unsuccessfully) fixing the stupid broken cement in the brickwork in our childhood home. For me, caring for my mother was simply spending time with her in whatever guise that might take.

Of course, there were times when caring also meant dealing with awkward and distressing moments, like the time we were taken into a separate hospital room and informed she only had days to live. And, when my mother would cough up big lumps of phlegm and blood every five minutes. Witnessing the raw manifestation of the disease was punishing for us both in different ways. She would sometimes look at me with a tissue full of blood and ask, "This isn't right, do I have long left?" What comfort can you give a loved one when they are faced with the evidence of their own mortality every few minutes?

Those moments of pain were, however, balanced with moments of levity. Sometimes, joy. It's perhaps strange to think these moments might exist under the circumstances, but they did. It's difficult to fully describe how these moments arose and encapsulate why they were joyful, but I guarantee they were real. It may have just been letting her cook a bowl of noodles for me at her house, or sitting and looking through old childhood photos and reminiscing about simpler days past. Joy did emerge and, when it did, it was overwhelmingly glorious. Raw and beautiful.

I am sure that a lot of people who care for others will have a much more difficult time than I had in looking after my mother. Though, what we will share is that understanding that it is a gift and a curse. It is a curse because you spend time watching your loved one suffer and die before your eyes. Witnessing first-hand what it means to have a life ebbing away from a parent, whilst coping with your own heartbreak, can be crushing. The gift, however, was the ability to savour those rare moments of closeness and to be reminded of the sheer love and respect you have. An opportunity to gain a large slice of perspective and focus on what really matters for a change.

With that, caring seemed worthwhile and inadvertently rewarding, though I am sure that isn't the best word to describe it. I have a huge amount of respect for carers and I can partly appreciate the hardship of undertaking such a role. May all carers have the energy and patience to get through the gruelling times, the strength and bravery to pass through the dark moments, and the light and levity to cope with the sad occasions. May they also gain just as much as they lose


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