'Absolutely draining': Unpaid carer's powerful account of life in Covid
- Credit: Luke Abendroth
When her husband of 38 years started to need full-time care, Pat Abendroth, 59, gave up work to look after him.
Mr Abendroth, 64, a former pastry chef, was diagnosed with Parkinson’s disease in 2009, a diagnosis which was followed by another for dementia in 2018.
Before the coronavirus pandemic the couple, who live in Holt, had support. Their son would visit their home one evening a week and the pair would visit the Poppy Cafe in the town twice a week for two hours at a time.
The regular visits gave the couple the chance to spend time with different people who understood their situation, Mr Abendroth stimulation outside the home and, importantly, respite for Mrs Abendroth.
But the coronavirus pandemic forced the service to halt, meaning that despite a brief spell between lockdowns when services could resume, Mrs Abendroth has been caring for her husband 24 hours a day with no respite for much of the past year.
The couple is not unique in their situation.
There are more than 100,000 unpaid carers in Norfolk, more than 23,000 of whom are providing 50-plus hours of care per week.
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The pandemic has meant vital support networks and community groups which offered help, an understanding ear and respite have had to close, leaving many carers isolated.
Mrs Abendroth said caring for her husband was "absolutely draining", and said prior to the various lockdowns the Poppy Cafe had been a "fantastic lifeline" to them both.
She said one of the greatest things she missed was the conversations with fellow carers who understood and identified with her situation and were not afraid to ask how she and her husband really were.
Mrs Abendroth said the volunteer-run organisation not only provided the chance to "have a natter" but also made her feel cared for as a carer.
She said: "I say to [the volunteers] you will never know what you do for us, that's the thing I miss the most, that they are doing it because they want to, there's no end goal. I will never be able to thank them enough for that."
Mrs Abendroth said while she felt she and her husband's situation could be worse, she wanted to highlight the plight of full-time carers during the pandemic.
She said lockdown and its subsequent restrictions meant a lot of the support her husband received from specialist nurses had been carried out over the phone, which caused its own issues.
"[Paul] has a Parkinson's nurse and a neurology nurse, who I will speak to on the phone but Paul is very perceptive so if I try to discuss [his condition] he becomes aware of it," she said. "That's one of the big issues, everything is done on the phone the only way I can really communicate is through text message or email."
Mrs Abendroth said people would often ask her why she did not get any help to care for her husband. She said: "My son will say 'you've got to ask for help' and I will say it's not easy.
"What I'm doing is stopping somebody being in full-time care, [Paul] is not in long term care."
When Mr Abendroth was diagnosed, she said: "My mother said to me, 'Pat, this is that bit of your vows, for better or worse, in sickness or health, this is where it gets tough.'"
She said she found taking a moment for herself difficult.
"You can't take care of yourself because the person [you're caring for] is always more important.
"Paul is not responsible for his behaviour, I'm the one who has to ensure he's safe a lot of the time. It's a bit like having a child, a lot of the skills I learnt as a mother are being used with Paul.
“The only difference is when you've got a child you know it's going to grow up, our situation is the opposite."
Mrs Abendroth said while her son, sisters and close friends were a great support, many struggled to understand the difficulties of caring for someone with dementia.
She said: "Until you're in that place, you don't understand, I didn't understand. I, like a lot of people, thought dementia was forgetfulness but it's your husband not being able to finish a sentence, never getting a complete sentence and seeing somebody who has been in their own house for 23 years forget where the bathroom is and, because there’s moments of lucidity, being really upset because they hate being like that."
She said she used humour, online groups and the music of Elvis Presley to cope.
"When things are really tough I put on an Elvis CD, so I have coping mechanisms but there are times when I think how much longer can I keep coping and that's scary. When do you know it's time to give up?"
A report from Carers UK in June found that nationally the coronavirus pandemic has resulted in four and a half million new carers. There are now thought to be more than 100,000 unpaid carers in Norfolk.
Sir Norman Lamb, former MP for North Norfolk and founder of the Sir Norman Lamb Mental Health and Wellbeing Fund, called for more support for unpaid and paid carers.
Sir Norman said the pandemic had been "incredible tough for many people" and while being a carer was "tough and challenging in the best of times" it had been made far more difficult by the pandemic.
He said while it was worth noting the efforts groups had made to support people remotely, which could be "vital to people who otherwise can be completely isolated", he said more needed to be done to support carers.
Sir Norman said: "We need to think about both the community support we can offer in that way but also government needs to think about what it should be doing to support people who are performing a heroic role to support people who would otherwise be reliant on statutory services."
Carers in the county can access support via Carers Matters, which is commissioned by Norfolk County Council to provide support including personalised programmes or emergency help.
Bill Borrett, Norfolk County Council's cabinet member for adult social care and public health, said: “We know that, during this pandemic, people can be cut off from their usual social networks and activities, and become very isolated and lonely. So, it’s really important that people know where they can get help, advice and support.
“I would urge anyone with responsibilities caring for a family member or loved one, who has not registered with Carers Matter Norfolk, to do so. They can provide personalised support to help people with their health and wellbeing, which is crucial if carers feel they are struggling to cope alone.”
A spokesperson for the Department of Health and Social Care, said: “We are incredibly grateful for the efforts of all carers who are looking after some of the people most at risk from the virus and we continue to do everything we can to support them in their vital roles.
“We have provided £4.6 billion worth of additional support to fund social care and local authorities during this pandemic and we recently announced £120m of new funding to boost workforce capacity to support carers on the frontline.”
Carers can access personalised support to maintain and improve their health and wellbeing from Carers Matter Norfolk at https://carersmatternorfolk.org.uk or by phone 0800 0831 148.