Forcing myself to swallow my tears, I wait in the care home garden for my mum. After six months apart and a four-hour train journey from London, I don’t want to waste my half-hour visit crying.
When she appears in her wheelchair on the other side of the door and sees me, she points and looks up to the carer, who nods — yes, that’s Sam, your daughter.
The last time we were together was in February and seeing her now makes me catch my breath. Her auburn hair is whiter than I’ve ever seen it before, making her look older than her 70 years. And her shoulder-length bob, uncut for months, is tied back in a braid that hangs down her back.
My mum, Maureen, has advanced dementia and lives in a care home in my home town of Wrexham, North Wales.
Sam Partington who spent six months apart from her mother Maureen (pictured), revealed they were able to reunite at her care home in Wales
Her illness started cruelly early. She was 57 when dementia began, brought on by a brain tumour she’d had diagnosed 12 years earlier, when I was 17. Both Mum and my father Phil, a supervisor at a production plant, tried to shield my older brother Michael, now 43, and me from the worst of it.
But years later, she began forgetting words and struggling with balance. She had to leave her job at a charity aged 53 because she was struggling to use the computer, and by the time she was 60 her speech was jumbled, her questions repetitive.
At night Mum couldn’t sleep and wandered around the house, moving things. My dad had emphysema and struggled to climb stairs so he couldn’t easily check she was safe.
Meanwhile, I had moved to London to train as a journalist. The companies I worked for were supportive but it was a stressful time.
Those years were awful, yet Mum and I often found ourselves laughing. Getting soaked trying to pull her out of the bath when she had forgotten how to stand up, or rolling around together on her bed, wrestling her into a pair of tights, would suddenly make us burst into giggles.
In early 2016, a nasty infection landed her in hospital for a few days.
‘She has dementia,’ one of the nurses told us. ‘How is she being cared for at home?’
Sam (pictured) said Maureen moved into Hillbury House, in Wrexham, in 2016 after being diagnosed with dementia
To hear the word ‘dementia’ was a shock. She had visited the GP often for her forgetfulness but we’d always been told it was a consequence of the tumour. It made us see we couldn’t keep her safe any more.
When she moved into the care home — Hillbury House, in Wrexham — in May 2016, aged just 66, she couldn’t remember how to walk.
In those first months, I tried desperately to convince myself, and Dad, that nothing had changed. But he died of a heart attack less than five months after she moved in.
At first I made plenty of mistakes in my efforts to maintain a ‘normal’ relationship with Mum. I insisted she had to go to my brother’s son’s 18th, for example, but the noise and low lights made her feel uncomfortable. In the end, she covered her face with her scarf and I took her home.
But we’ve had successes, too.
Last summer, I left my job as a personal finance reporter for this paper to spend more time with Mum. I stayed in London because I had nowhere to live in Wrexham — my brother and I sold the family house to pay for Mum’s care — but to be close to her, I bought a sofa for her room in the care home, and a TV and DVD player, consciously recreating our old lounge in her bedroom.
Sam recalls being happy when she visited Maureen in February, revealing their bond was stronger than ever. Pictured: Sam as a baby with her mother
Pre-Covid, the carers would hoist Mum onto the sofa so we could sit side by side. I’d shut her bedroom door, kick off my shoes, curl up on her and put her arm around me.
If I spoke in the same tone of voice I’ve always used and asked questions in familiar language, sometimes she answered instinctively. Then, I would feel we’d tricked the dementia.
After she met my partner, Spencer, for the first time in 2017, I asked: ‘What do you think, Mum?’ There was a pause. ‘Handsome,’ she said.
Once I said: ‘What do I look like in this dress, Mum?’ No pause this time. ‘Fat.’ You’ve got to love mums.
In February, when I visited last, I was so happy. I had the freedom from work to visit more often and our bond was stronger than ever.
I had plans for the summer: Prosecco in the gardens with her, and a cinema trip to a ‘dementia-friendly’ showing.
But for now those moments are gone and I’m scared how much damage it will do to our relationship.
Sam admits during lockdown, she was frightened that her mother (pictured) would think she had abandoned her or forget that she had a daughter
On this first visit after such a long gap, we are allowed to have lunch together outside. The home has a strict ban on anyone but staff entering the building.
In theory, we are allowed only a half-hour visit and I worry it won’t be enough time for Mum and I to revive our bond. Normally it takes her about an hour to warm up to me or even recognise me fully.
We sit either side of a wide table, waiting for the food to appear, and at first it seems my fears are justified. Mum, wrapped in a blanket, doesn’t seem that bothered to see me. Before the pandemic I visited monthly and spent days at a time at the home.
During lockdown, I was frightened she’d think I had abandoned her or, worse, that she would forget she had a daughter. And now I’m finally allowed to see her, in the 30-minute slot there won’t be time to make any kind of emotional reconnection.
It is a scene repeated in care homes up and down the country — snatched visits with confused, distressed residents who often fail to understand the reason for their relatives’ apparent desertion.
This isn’t the fault of individual care homes, which are only following government guidelines. But perhaps these rules, so lacking when it mattered at the height of the first wave, have now swung too far in the opposite direction.
Sam (pictured) said without being able to cuddle her mother, she fell back into her old habit of trying too hard to get a response from her
My mum needs to be safe but my love for her also plays a hugely powerful role in the management of her disease.
It’s hard to tell how much Mum understands Covid rules. She rarely talks any more. Usually we’d watch TV together, holding hands. Of course, now I am not allowed to hold her hand and I can feel a widening gulf between us.
Her carers, however, always amaze me with their kindness. I was only expecting a few sandwiches but instead they treat me and Mum to an afternoon tea — three tiers of cakes and finger sandwiches and a lovely pot of tea.
The food is a welcome distraction. Without our cuddles, I fall back into my old habit of trying too hard to get a response from her. It reminds me of how I used to be when Mum first moved into the care home four years ago.
Back then, I was desperate to prove life could go on. At my peak of mad overcompensating behaviour, I soaked her feet in a bowl of soapy water while trying to feed her favourite Chinese food.
In the end, by accident and sheer exhaustion, I realised I’d been going at it all wrong: the less there is going on around Mum, the more focused she is on the two of us.
Sam said her mother (pictured) tried to talk a little but her words came out jumbled and she closed her eyes in frustration
And if I fuss too much, I miss her blinks. ‘I love you too,’ she’s saying when she closes her eyes for a bit longer than a blink.
Sometimes, when she was less alert, I would stand behind her chair and she would let me brush her hair — another way she showed me her love.
This time, our half hour comes and goes in a flash and other families start to take their places at the tables, waiting for their loved ones. It’s freezing and napkins are blowing all over the place. But, bless them, the carers don’t ask me to leave yet.
Finally, Mum tries to talk a little but her words come out jumbled and she closes her eyes in frustration. I can’t help reaching over and putting my hand on hers to let her know it’s OK.
It feels so good to touch her skin and she instinctively wraps her fingers around mine for a second. Her smile is filled with love and, although I’m crying a bit, it makes me relax. She knows it’s me.
I am so grateful for this visit, especially since other means of contact no longer work for us.
Even before Covid-19, I’d stopped ringing her in between visits. Mum wouldn’t say anything and those calls always ended with me crying into the silence.
Sam (pictured) said she had to settle for video of her mother receiving a cake, when she turned 70 during lockdown
But when visits were cancelled in March, suddenly the phone was all we had. I switched to video calls because I thought seeing my face might prompt her to be more alert, but it was hit-and-miss — and sometimes it was heart-wrenchingly awful. I’d manage ten minutes of watching her gaze drift around the room, then return to the screen with a blank stare.
She turned 70 during lockdown but we had to settle for a video of her receiving a cake while her carers sang Happy Birthday.
Like thousands of families, we have missed out on so much. Yet we are the lucky ones. While Covid has swept through many care homes, in my Mum’s home there has been just one non-fatal case.
In the end, I get to stay for two hours. While I’m there, a band arrives to play for the residents and I watch as Mum sips a glass of wine and taps her foot to the music. I can tell she’s happy. Then she glances sideways and gives me such a warm smile — and one of her winks. I feel a glimmer of hope. I’m sure of it — one day soon, we’ll be curled up on her sofa together, holding hands again.
Elderly residents are being let down yet again
By Nicci Gerrard
There are too many stories like this one, too many spouses, partners, sons and daughters separated from those they love.
In the name of safety and infection control, great damage is being done.
Nearly six years ago, Julia Jones and I founded John’s Campaign, following the death of my father Dr John Gerrard (after whom it is named). Having witnessed his dramatic deterioration in hospital, when he was separated from his family because of an outbreak of infection, bewildered and alone, Julia and I pledged that other people should not go through this experience.
John’s Campaign was founded on the principle that close relatives of those suffering from dementia should have extended visiting rights, as they are essential to a patient’s wellbeing.
For six years, we made steady progress in changing the culture in hospitals and care homes — then along came Covid. The grief, guilt and anguish it leaves will last for many, many years.
Zoom meetings, window visits, glimpses through fences and, for the lucky ones, brief and chaperoned times in gardens, as the weeks turned to months.
People with dementia need to see those they love. Disconnection can even be fatal for those whose condition endangers their sense of self.
Dementia deaths have risen sharply. Too often, sufferers have died alone.
John’s Campaign believes this separation must end. Family carers should be trusted to take the same sensible precautions as paid carers and be allowed back into the homes where their loved ones wait for them.
That is why John’s Campaign is asking the Government for a judicial review, which we hope to pay for through crowdfunding. We believe a violation of human rights is taking place.
Time is urgent. The average life expectancy of someone in a care home is two- and-a-half years; for a nursing home resident it is 13 months. Six of those months have already gone.