The grief nobody names.

On caring for beloved elderly parents and mourning the life you once shared.

Hi there… this is the second part of my ‘Loving is easy, caring is complex’ series. You can find the first part here.

Photo by Joshua Hoehne on Unsplash

‘Ping’

Clouds of icy breath fill the air as I scramble around in my bag with my frozen fingers retrieve my phone. Panic sets in.

It is a bitter cold January evening, and I am walking home from work. It has been 13 months since my mum had her stroke. We have just spent Christmas together. A family Christmas full of love and pride at how far my mum, well all of us have come. But pride comes before a fall, and we were all about to hit the floor hard.

‘Dad has had a fall; we are in the hospital. They think it is a TIA’.

My blood freezes like ice. We know all about TIAs (Transient ischemic attacks or mini strokes as they are sometimes called). My mum had experienced them before her stroke and now dad is suffering the same. Two parents at risk. Daughter’s hundreds of miles away. I fly into a panic. I just want to be with my dad.

Everyone loves my dad. He is just one of those guys. Funny, kind, smart and witty. Fit as flea too. Not a drinker or a smoker, a prolific walker who only normally sits down to watch the news before he is of again.

Always popping off the shops, running errands, tinkering in the garden. Active and strong but the year following my mum’s stroke he began to slow down. And he didn’t like it.

He just didn’t have the energy. He just didn’t feel ‘right’ and despite numerous trips to the GP, the hospital, tests and scans, endless poking and prodding, he was still struggling. Now it seemed his struggles had got worse and this was just the beginning.

‘Ping’

A few weeks later another text arrived. Once more my blood ran cold.

‘Dad has had another TIA. In hospital. Don’t worry, he seems ok’. Text my older sister Emily.

My younger sister Ruth and I flew into a panic.

‘Mum and dad will have to come and live with me’,

Ruth messaged whilst simultaneously I typed out,

‘I will start looking at care facilities near me’.

Emily was more sanguine:

‘Given the state of A&E, we will still be sat here this time next year, its ok. Don’t worry’.

But there was a lot to worry about. The TIAs continued and Dad chose to surrender his driving licence. My Dad. The man who once drove through Ireland, Scotland and England in the same week. The man who had driven tens on thousands of miles a year during his career. The man who had dutifully ferried his granddaughters around like precious princesses since the day they were born. Now housebound.

You can’t keep a good man down and my fatigued Dad quickly tried to regain his independence by walking to the corner shop. To buy a paper. To get out of the house. But then he fell again. Or had another TIA, nobody can really tell us which. A kind passerby brought him bruised and shaking back to the house.

‘Don’t let the girls see my bruises’, he told my sister, trying to hide his pain from his beloved granddaughters. My heart broke.

Something else was breaking though and it’s hard to put into words what exactly but the strain of caring is cumulative, and we were all feeling it. My mum had needed care for the past decade. Chronic illness had plagued her for most of her life (she retired due to ill health in her fifties).

By her seventies her mobility was deteriorating, and her health was going downhill. She was often more unwell than well. Treatments didn’t work or made her worse. Referral after referral. Scan after scan. New consultant. New hope. Same hope dashed. Abysmal for her. A source of constant anxiety for us.

Then her stroke and then Dad’s TIAs. Everyone terrified. Everyone with an opinion. No two opinions the same. Constantly walking a tightrope between encouraging independence and keeping mum and dad safe, with no consensus on how the hell to do either.

Both mum and dad shoed away input from Social Services. Mum would not let them install a wheelchair ramp outside her house, even though she can only go out with a wheelchair.

‘It will make it look like old people live here’,

she protested ignoring the blindingly obvious fact that old people do indeed live there. Dad was too proud for a Social Care Act assessment.

It was up to me, Emily, Ruth and our cousin Jude to find a way to care for mum and dad. There was understandable friction. The stakes were high. We love our parents, they mean the world to us.

The friction between created sparks. Sparks fueled by constant feelings of fear, dread, exhaustion and inadequacy. The sparks became a flame which was ignited at a family wedding last year.

Jude’s son was getting married but by now, with their reduced mobilities and constant fatigue, it was going to involve a series of military manoeuvres to get mum and dad to the wedding and well enough to enjoy the day.

The day itself was magical but putting Mum and Dad to bed that evening tempers started to flare and by the next morning Ruth and I exploded over breakfast at the hotel. Arguing like only sisters can.

I didn’t mean it. She didn’t mean it and we made up by text a few hours later, but we were, and still are, flying by the seat of our pants. Nobody told us it was going to be like this and yes of course we should have guessed but we just didn’t. I don’t think anyone really believes their parents will get old.

The guilt of not being able to see Mum and Dad more is not offset by the exhaustion of actually going to see them and feeling that I am still not doing enough. Leaving my dad waving at the gate will never not break my heart but having to remind him 100 times to put his hearing aids in will never not irk me.

Seeing my mum cry because she is lonely makes me want to give up my life in London and rush to be permanently by her side – but my daughter is at school here, my husband works here, I have spent two decades building my life here. I’m torn.

I grieve daily for the life we once had whilst thanking God for the life we still have together. The shopping trips we once enjoyed (Mum and I once spent 6 hours in Marks and Spencer’s and visited the café for both brunch and afternoon tea!).

The family trips to Center Parcs, my dad winning on the arcades, a complete fluke, he had never played arcade games in his life and still has no idea how he won. I miss it. I never took it for granted by oh how I want it back.

There is grief involved in caring. Witnessing a loved one lose aspects of their life, their independence and their autonomy is painful and unpredictable. There is also frustration and at times resentment. There I said it and may God strike me down, but I am sure I am not alone.

There is fear, anxiety, sparks of panic and formulations of ridiculous and unworkable plans which eventually subside in favour of a life less lived. And the sadness, I think that is the worst. It is just so sad.

We hold onto times of happiness and joy. A family meal, a terrible Saturday night TV programme (oh how we all love to shout at the TV at them), a birthday, a trip to the garden centre, a cuddle on the sofa, a snuggle in bed or a discussion about world events (definitely my dad there not my mum).

We carry on. We make the most of each day. We sometimes snap at each other. We sometimes cry. We are all just doing the best we can.

No tips, no advice. Just words. My story. Our family story. The family who I love with all my heart. Writing in the hope that others feel witnessed and comforted by my words. Loving is easy but caring is complex. I see you.

I would love to hear your stories of caring, for parents, children or loved ones. I am building a substack community that is far greater than me and I would love for you to join and be a part of it. Please also like or restack to help reach more carers and increase this caring community. I would really appreciate it. With love and gratitude, Rebecca X

Writing is my only form of income and I want to continue writing, reaching more people and making life better through words. If you can support me by buying me a coffee, I would be extremely grateful. X