Janet had been caring for her mum, Doris who has dementia, from a distance. As coronavirus hit and Doris’s dementia symptoms advanced, it became apparent that she needed more specialised care. When help arrived, it was a real blessing.
No-one can ever really tell you what it is like to care for someone with dementia.
People can talk about their experiences. But somehow, they are never able to capture the full emotional, physical and mental demands of the job.
My mum now has a paid for carer, and she is brilliant. But I think I only fully appreciate the skills she brings to the job because I know what how difficult it can be.
Mum was a primary school teacher and you need to have a certain skillset to do that job. She could be lovely and charming, but she could also be strict when needed.
That’s when I began to use the Alzheimer’s Society website. The information was helpful, and other people’s stories reassured me that Mum’s symptoms weren’t unusual.
I cared for Mum from a distance – I live about a 40-minute drive from the family home. Mum is fiercely independent, and there was never a question of her willingly moving in with me or my sisters, or one of us moving in with her.
And that was fine in the relatively early stages of dementia. But about six months ago it changed for the worse.
Dealing with difficult behaviour
Mum’s behaviour became more challenging.
The agency, that sent carers round four times a day, reported they were unable to cope. Once, Mum was convinced they were killing her family, and her carer had to call in back up as my mother had her in tears.
Mum recognised me but struggled to remember some family members, including one of my sisters. She repeated sentences, had very little short-term memory and hallucinated.
Mum got very angry and refused care - wanting the bossy people to leave her house. She was incontinent and her carpets were stained with the cleaning of faeces as she took off her pad. She cried when I visited as she is lonely but then cheered up until I left.
Then, as coronavirus hit, a series of things happened.
Mum fell three times at night-time, relatively close together. She has a fall alarm, which went off and alerted my sister. But when the paramedics were called, they couldn’t gain access to the house but assessed that Mum was safe.
Still, Mum was on the floor for some time and it was only when her carer arrived that the paramedics were able to go in and assess her fully.
Thankful for Bennie, our blessing
At short notice, we organised a live-in carer, who has been excellent.
Bennie arrived like Mary Poppins and immediately impressed us with her efficiency, fortitude and skill in dealing with Mum’s behaviour.
I can only meet Bennie from Mum’s garden due to social distancing rules. On day one, moments after Bennie arrived, I looked through the window and she was already changing Mum into a clean pad.
Bennie is there day and night and she manages caring for Mum, popping out for essential shopping and her own breaks. It is remarkable.
‘Mum’s symptoms got noticeably worse during lockdown.’
She refused to take her medication. Mum, who never swore, started swearing at Bennie – including references to the colour of her skin.
Bennie says, 'I know what Doris was saying was not appropriate. But I also know it was the dementia talking. And it was the depression talking'.
Mum could also move from that aggression to the vulnerability of thinking she was a child and crying for her mother or father.
Sometimes she didn’t know where she is. Bennie cleverly shows a letter addressed to her to reassure her she is where she should be.
Bennie’s name is short for Benedicta, which means blessing. Bennie has been a total blessing to us. She is so calm and so talented at her job. I don’t know how she does it, and I cannot think of what we would have done without her.
A few weeks ago, Mum’s medication was changed, and – relief.
What a change, she now has lucid moments and allows Bennie to wash her hair.
Mum is standing and can walk very short distances, plus the really challenging behaviour has subsided.
Bennie says, 'What I do is enter her world. That is how I communicate with her, and it works. Now we giggle together'.
I haven’t been able to see Mum because I have health conditions of my own, but I cannot wait to go and see her for lunch. I am looking forward to a time when I can give her my care too.
I still have anger about how unjust it is that Mum needs to pay for her care, when any other medical condition would be treated by the NHS. And this whole process has been exhausting for my sisters and me.
But I am grateful to Bennie, and her remarkable skills of patience and persistence and her care for others.
We must Fix Dementia Care
People affected by dementia typically spend £100,000 on their own care. We are calling for a social care system that works for people living with dementia and their families.