In the wake of Carers Week, community members caring for a loved one at home have spoken candidly about their struggles.
Vivien Chappell has cared for her husband Gerald since he was diagnosed with Parkinson’s disease and Alzheimer’s 15 years ago, following a period of physical and mental illness.
She believes the demands of his job as a high level tax lawyer “led to his illness and eventual retirement”. He has diminishing mobility and cognitive ability and has be given medication six times a day.
Mrs Chappell said the lockdown had been a “leveller in some ways”, allowing others “to understand life at home for a carer a little more.
“There have been times when I have felt resentment and compassion fatigue, which I know I have in common with other carers,” she told the JC. “It is difficult to find the patience and tolerance that is required to care for someone.”
Before the pandemic, the 73-year-old had been taking her husband, 77, to Jewish Care’s Sam Beckman Centre for those living with dementia, also attending the family carers support group. This now takes place on Zoom, but “doesn’t feel quite the same”. Both continue to engage in fitness activities.
The Belsize Square Synagogue member is thankful that their contracted carer, who wasn’t seeing other clients, has continued to visit wearing PPE. Her son and neighbours have also helped with shopping.
But Mrs Chappell added that carers “often hold back as we don’t want to burden people”. The reality was that “we feel so much better if we can delegate. In doing that, it makes the friend or relative feel more useful and it helps to make the carer feel less of a victim and hard done by.”
Bury-based Maureen Luckner said that being the sole carer of husband Victor, who has vascular dementia, was “a lot of hard work”. But she had declined help as she worried that strangers might make him uncomfortable.
Mrs Luckner, 76, said her husband’s condition had deteriorated since January and it was “not easy” witnessing his decline.
She was grateful for the assistance provided by the community advice and support team at Manchester welfare charity The Fed.
During the lockdown, she had missed contact with other people, such as visiting a friend for lunch on a Monday. But she didn’t feel lonely.
Also receiving support from The Fed is Felice Bourne, 74, who cares for her cousin Alan, 73, who has Alzheimer’s. She said that although getting through the day could be “incredibly wearing”, he was “a joy to be with”.
Lesley Wines, who manages Jewish Care’s family carers team, said the Covid crisis had brought additional challenges. “Many carers who were very independent are shielding and are having to ask for practical support for the first time.”
Having no respite from their role, “many unpaid carers are now caring 24/7, without a break”.