Before Marianne retired, she was a care worker in hospitals, hospices and care homes. With an extensive career history in the care sector, she imagined caring for her husband Neil by herself wouldn’t be difficult. But as Neil’s condition worsened she found that this was far from the truth and reached out to Carers First when she was at her lowest. Here’s how the charity has helped Marianne.
“Neil was diagnosed with Parkinson’s when he was in his 50s, so I’ve been caring for him for around 18 years now,” Marianne explained.
“At first his condition wasn’t too bad, and I thought to myself, ‘I can do this, I can care for him by myself with no problems’, but as the years have gone by I’ve struggled to cope. I thought I could be far more independent, but the reality is that the last eight years have been a trial.
“Being a full-time carer is extremely demanding – it means putting someone else first constantly. My life has completely changed; I can’t make last minute plans, I can’t go away, even simple tasks like going shopping are difficult because you know you have to be present and prepared to help the person you’re caring for.”
She added: “I’m completely responsible for Neil, especially as he has dementia too; I help wash him, dress him, feed him. I’m his eyes and ears; even picking up the TV remote can be a struggle for him so I have to help. It’s a 24/7 job, I’m awake early in the mornings and up throughout the night too which is so tiring. The responsibility can often be too much for one person to bear and your life is not your own.”
Marianne said that despite having been a care worker during her working life, she recently began to struggle, particularly with her own physical and mental health.
“I suffer from osteoarthritis and I’m due for a knee replacement soon,” she said. “I’m in a lot of pain most of the time but you can’t think of yourself because you’ve got the responsibility of looking after someone else; their needs have to come first.
“I’ve had the difficult conversation with Neil about me going for my operation. It will mean that he has to be placed in a care home; we have no other choice and it feels awful, but he doesn’t have any family that would be able to care for him while I’m recovering.”
She explained that caring for Neil alone has also taken its toll on her mental health: “I’ve been at some really low points where I’ve hit rock bottom and felt like I couldn’t cope any more.
“It’s a mixture of exhaustion and depression. The reality of caring can be painful and if you feel like you’re isolated it’s even worse. I felt completely alone.”
Marianne decided to reach out to Carers First during the first Covid-19 lockdown after receiving their leaflet from a dementia support team. “Lockdown forced me to realise how desperate for help I was. We were shielding and completely cut off from everyone, and I knew I couldn’t cope by myself,” she said.
“I got in touch and Carers First answered immediately. I spoke Jenny who is now my point of contact, and she has been an absolute angel. Jenny is my lifeline; she’s so kind and understanding, and she always listens to me without any judgement at all.
“The team listened and gave great advice. They even organised a grant for me to go to London for my son’s wedding so that I could have a bit of respite from my caring duties and relax. That was incredible, and something that I wouldn’t have been able to do without their help.”
Marianne added: “I see Jenny as my friend now, she’s amazing. She helps me fill forms out, gives financial advice, listens to me laugh and cry… sometimes she’ll ring for a chat and we’ll talk for an hour about anything at all. It’s so nice to talk about things other than caring!
“Just knowing that there is someone at the end of the phone who will talk to you and lift your spirits can make the world of difference. Carers First has truly been my lifeline and if I could give them a star rating out of five, then I’d give them 20!”
Marianne wants other people to know that they’re not alone, and not to struggle by themselves as she did. “My advice would be to seek out as many lines of support as possible,” she said.
“Go to Carers First. Don’t be afraid to reach out like I was and allow yourself to hit rock bottom before doing anything about it – there are people and systems prepared to give both practical and emotional support, so don’t shoulder the burden alone or wait until it’s too late!”
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