Being fearlessly independent, myself and my father are incredibly similar. I live in London after he dropped me off for university 8 years ago and have stayed down here ever since. My father was always my travel buddy but as time goes on, we fell into doing our own rhythms of life 200 miles away from each other. He volunteered tirelessly in a poverty alleviation centre in the town and I worked away at the London life I was building for myself. Even at Christmas I would spent it in a London pub with our open door policy to all those looking for somewhere to celebrate and he would be in a community centre with up to 200 homeless, driving the van and getting stuck in with the laughs with the best of them.
“Now I don’t mean to worry you, but you know what your Dad’s like always trying to make people laugh. But we ask him to do something and he can sometimes get confused. Ask him for a tin of beans from upstairs and he comes down with sweetcorn, now he can joke around like that but …”
Not what you want to hear from your Dad’s best mate and centre manager. He must have been like this for a while and hiding it from everyone he could. To end a confusing couple of months for him he ended up leaving his house in the pouring rain with no coat, phone or keys and walking the streets not knowing where home is. Ending up in the YMCA night shelter with everyone recognising him, knowing something was not right they straight away called the ambulance.
This was a blessing and a curse. Everything was taken out of our hands and managed by the social services which makes it easier for us as we didn’t have to make those big decisions. As bad as it sounds, we weren’t the ‘bad guys’ taking his life and independence away from him. The pressure of making these life alternating choices was alleviated but didn’t make the implications of the change any easier to deal with. After a couple of weeks in hospital he was diagnosed with Alzheimer’s and had to go to an EMI nursing home with no freedoms whatsoever. The life that he had known had been taken away in one big swoop, with any hope of independence and the life he had a thing of the past.
No one ever wants or dreams of becoming a carer for a family member, lets be real. But when it happens to those you love, you jump straight to it, with everything you’ve got and think about any implications later. You can’t compare your life anymore to others, just take it challenge by challenge and accept the reality that is your new life. I always had the idyllic idea of having a family and eventually moving my father in to live with us and be part of the family again. But our dynamic slid from the strong independent man I would rely on for anything, to me being the strong independent women, there to help enable him with his independence as long as I could.
Over the last 3 years since his diagnosis he has been in care homes and gone from seeming ‘normal’ and ‘healthy’, looking at you glassy eyed and confused with a nervous laugh of ‘Sorry, who are you again?’ To not being able to string a coherent sentence together, wearing adult incontinence pads and not being able to be out of the home for more than hour out of paranoia. Even with a physical change of weariness in his face and more fragile walk to accompany his new mental state.
In this time, I have learnt how to flip the narrative of Father Daughter to Father Carer and have cherished every moment. I think it’s vital to be honest about this journey and saw very little online of what to expect and the reality of caring for someone with Dementia, and his changing behaviour. Because of this I started blogging and making videos of our time together, to both encapsulate our memories and share with others what works for us and what it actually looks like. The one piece of advice I would give is reach out and explore what your journey might look like, through examples and advise from others. It’s a great relief to recognise and have confidence that your interactions are helpful, and you can bring joy and comfort to a person, even in the most difficult situations, and other people go through this too!
The above paints a sorry picture however that doesn’t consider all the happiness we have had ever since his diagnosis. Ice-cream and fish and chip eating summer-soaked weekends. Laughs of getting soaked by the heavy rain with cake and toast dipping tea moments that are some of the most precious time I have ever had with him. Even when he doesn’t know who I am I have no regrets and continue this mountain trek of highs and lows of being a care giver with a heavy and love filled heart ❤
We would love to hear your story! If you are a caregiver or know someone who is, and you want to write a piece about them, please submit your article to be featured on our site throughout the series. Send your story to firstname.lastname@example.org.