Real stories

‘Bonnie is my best friend who deserves the best quality care’ - no respite during lockdown

Bonnie and I have been friends for nearly 20 years. We have a rare, unique relationship – she is my best friend, the sharpest cookie I know and a highly social individual.

Being so close, I was the first to notice that something was awry. She began to forget her PIN number and lose things around the house. After some hesitation by the GP, Bonnie was diagnosed with Alzheimer's disease, aged 66.

Moving in during the pandemic

Before the pandemic, I already did most of Bonnie’s care. But two weeks before lockdown, I decided to move in full time to look after her. It meant I couldn’t see my partner or daughter for three months which was crushing but I do not regret it. 

I want Bonnie to live safely at home for as long as possible, and that means my role is 24/7. Waking at dawn when she does, keeping her company during the day and making sure she sleeps soundly at night. But I need more support to do it all.

‘While as a best friend, these are things I do happily, it should not be this way.’

Over lockdown, I saw a sharp decline in Bonnie and, at points, in me. Any additional care or support I did have stopped, social contact was little to none and, our life changed drastically. 

No respite during lockdown

The support of the social care system, be that day centres, care homes or a friendly social worker, is vital. For her, it’s the social interaction. For me, it is being able to take the weight off my shoulders. 

Without it, I have felt the strain. Fighting to access a carer's allowance, financially supporting my daughter and keeping my passion for music going, I have been left without a penny. But I have also been left without a moment rest, or any guidance as Bonnie’s condition has progressed.

We have relied heavily on peers at our local Young Onset Group, and Alzheimer’s Society support workers. However, without my proactive nature, this help would have been hard to find, and at points of crisis, almost impossible. 

Abandoned by the Government

As Bonnie’s carer and a carer to my mother and father before that, I have navigated the social care system more than once. Yet 40 years on, my experience of the system remains the same; inconsistent, neglectful, and unsustainable. 

A dementia diagnosis should not mean your savings are drained, you should be able to cherish those years left with your loved ones, with purpose, meaning and connection.

I strongly believe in the phrase ‘the true measure of any society can be found in how it treats its most vulnerable members.’ Our social care system has been decimated and torn apart, leaving those living with dementia and their loved ones to feel isolated and ill supported.

I will continue to fight for drastic, forward-thinking action from Government. 

As Bonnie’s carer I am exhausted, however as Bonnie’s best friend I am her biggest champion. But the question that stays with me now is, how do I support her best? Do I fight to keep her at home, or support her in care as a friend?

I am a complete optimist. I try to make the best of it every day. But there are some days where I cannot express how sad I feel about seeing Bonnie begin to slip away now. There are moments of sheer terror. I need the right social care support so I can care for Bonnie the best I can. 

She deserves the best quality care. She is a wonderful woman. She can remember things that happened 10 or 15 years ago, and we still laugh together every day. But just because she is not quite the woman she was does not mean she is not there. She’s not gone yet. Government must step in so I can keep going. 

Because while dementia isn’t curable yet, the care system is.
 

This article was originally published on 10 October 2020, and most recently updated on 29 April 2021.