Fear, Hurt and Healing

I’ve been dreading this trip for two months.

With each passing week as the date got closer to me flying to Hong Kong to see my mum, my anxiety increased to the point where I was having regular panic attacks each week. My heart would be racing, I couldn’t breathe, my stomach would cramp and I would break out into cold sweats.

The time has arrived. I am now here with my family so I can take care of my mum whilst my brother and his wife have some much needed respite and can get away for a little break. My visits to Hong Kong as an adult have not been very pleasant and so that’s why I haven’t been for nearly 25 years. I would get openly stared at and have people be rude to me because I didn’t fit in. That was also adding to my anxiety. I’m really glad that it hasn’t been as bad this time around.

If you are wondering why I would get panic attacks about the thought of seeing my mum, there is much to explain and I’m very aware I need to change this pattern and how I feel. Rewiring my brain and reactions to think and behave differently is challenging, there are so many triggers of being with mum that put me into anxious mode. I know that she also gets anxious about us too which is where the screaming, shouting and erratic behaviour comes from. I have the benefit of being able to change my patterns of behaviour, mum doesn’t have that ability and so this is something I need to remind myself regularly.

I don’t want to continue thinking and living in what was. I want to be present and improve what will be.

I was recently asked to name a happy memory I’ve had with my mum for an incredible campaign that I was involved with for a dementia charity. I couldn’t think of one and I ended up choosing a memory that involved my dad because even though he is not physically here, and hasn’t been for many years I experience his love and reassurance regularly.

It breaks my heart that my experiences with my mum have for the most part been unpleasant, painful, shameful and frightening. My mum in her younger years was so powerful, dominant and strong. I partly admired and yet also greatly feared her in those days. My mum was tough and resilient. In the early part of her dementia before we received an official diagnosis, we have seen those traits turn into dementia rages which would last for hours, sometimes days. They were exhausting and we would be constantly on edge and walking on eggshells around her. Scared that anything we said or did, or what we didn’t say or do would make her fly into a rage at us.

Now I’m here.

Spending some much needed time with my brother and his wife which I really value. I worry about them constantly being so far away now and looking after mum. I also carry tremendous amounts of guilt as I don’t have the ability to walk down the road like before when they lived in London. I have very little capacity to help look after mum since they moved to Hong Kong. For anyone who has taken care of loved ones with dementia, we all share similar experiences. It’s incredibly tough, and there will be moments where we will break down and cry out of frustration and fear of what may happen… yet we must go on. We cannot give up. We live for the small moments, the little sparks of joy where the love and acknowledgment is seen and we feel that energy. For us though, love was never seen or felt in a healthy way – only out of anger and disappointment. I am so sad for my mum she also had a very difficult and painful upbringing, and it has been passed down to us.

There are many things over the years that have happened in my family which we deliberately keep from mum and only tell her when absolutely necessary as we are all worried about triggering her rage. We also don’t want her to worry and get anxious about us, which she does constantly.

Today we had an incident where we had to tell her some of the things we have been withholding, we couldn’t keep them a secret any longer. We were all nervous about it and expecting the screaming to start and I could feel my own anxiety, and that of my brother and his wife’s increasing. We were all fearful of mum’s reaction.

There was no response. No flicker of acknowledgement in her eyes or face.

The dementia deterioration has taken many of my mum’s memories. She didn’t know who we were talking about, even though they are people who are very dear to us. We were talking about our own families, and those which we have married into. We watched mum so she could absorb what we had told her, still no response.

I know this week may have some difficult times ahead for me as I will be on my own with mum. I can’t let my fear and anxiety get the better of me. I will do my best to be patient, loving and kind to someone who has shown me so much cruelty over the years.

I forgive my mum regularly from afar for my own mental health and wellbeing. I also have to forgive her daily now I am here.

Nothing I ever say or do will ever be enough for mum. I can’t be the person she wanted me to be – a replica of her.

I can only be me. Sorry mum.

I wish you could see we only want what’s best for you. We have done so much over the years to heal our childhoods so we are in a position to take care of you now.

We deserve to heal. I hope together we can, no matter how hard the journey may be.