We asked four carers about their own caring experiences, and what 'Prepared to Care' - the theme of this year's Carers Week - means to them. Read their powerful stories below.
Anne has been a carer for the last nine years, looking after her husband, who has Alzheimer’s.
Anne says, “My husband is a different person now to the man I married. It’s heartbreaking because he was so intelligent and gave so much to the local community. He loved sports, especially cricket, and he has passed this love down to his sons and grandsons. He was my hero, but now he can’t even talk to me. He has no concentration, no attention span, and has no quality of life.
“There’s nothing that can prepare you for Alzheimer’s. How could you even begin to think that your other half is going to have this disease which can never be remedied? It’s not an easy thing to take on – you’re caught between a rock and a hard place and that really takes its toll.
“But there are things that can help. I’ve had a lot of respite care through Crossroads, which increased as my husband’s Alzheimer’s advanced, and I couldn’t have managed without that. I couldn’t leave my husband on his own, and I couldn’t take him out shopping because he’d get lost, so I don’t know how I’d have coped without the help and time that Crossroads’ respite gave me.
“I’ve also had a lot of help from Alzheimer’s Society and CAB advising me on financial matters. My husband used to do all the finances, so I wasn’t sure where to start, and I’ve had to cut back a lot, but they have helped me to learn what I needed to know. There are organisations and schemes out there to help you, but you have to know about them.”
Bett Phillips has been a carer for the last 50 years. Her husband was involved in a severe accident, leading to a skull fracture that was recognised too late to be treated and left him needing significant care. Later he developed brain tumours and, after Bett had cared for him for 30 years, he sadly died of cancer.
Their daughter was just 18 months old when he had his accident, and Bett was left caring not only for her husband but also for their daughter, whose severe learning difficulties meant she was confined to a wheelchair and could have little independence.
Despite these difficult circumstances, Bett stayed positive and was determined to make the most of life for herself and her family. She worked hard to ensure her daughter had the best life possible, including becoming very involved in a choir for disabled adults which her daughter enjoyed attending. Unfortunately her daughter died recently, shortly before her 50th birthday.
Bett is keen to use her experience to help others in similar situations. She spent 28 years working in a home for the elderly and looked after patients with Dementia, so she often gives help and advice to people she knows caring for loved ones with Dementia. In addition, she has recently completed Carers in Hertfordshire’s mentor training, so that she can use her knowledge and experience to guide and mentor other carers.
Bett says the key to being prepared to care is staying positive. She says “I’ve always been a positive person, but caring has made me who I am today. My advice to others would be to take things day by day, never try to rush yourself or the person your caring for, and make sure you find time for yourself as well.”
Laura* carers for her son Jason*, who is 21. Jason was diagnosed with Dyspraxia aged 7 and found it hard to fit in with his peers. He did well at school and college, but struggled at university and began using drugs heavily. He failed his exams and didn’t turn up for his resits, and eventually had to return home.
Laura nursed him physically and mentally, and did see improvements, but says her son has never been the same since. Jason improved, got a job and moved out of home to live with a friend. But when his friendship with his flatmate turned sour and Jason was stress by financial worries, he declined rapidly and took an overdose.
When he came out of hospital, Jason returned home to Laura’s care. For a while he seemed okay, but then he started having severe mood swings - Laura suspects he was using drugs again – and he took another overdose.
Jason was taken to a mental health unit, and Laura couldn’t take him home again, knowing she couldn’t provide the level of care he needed alone. Jason went to another mental health unit and then to a rehabilitation centre, who tried to persuade Laura to take him home again.
Laura faced a long and gruelling battle to get Jason into supported housing. Jason has taken two more overdoses and had a spell back in a mental health lodge, but is now relatively settled into supported lodging, which Laura feels is better both for Jason’s needs and for her own health and wellbeing.
Laura’s experience of caring has clearly been very emotionally challenging. Laura says “People often forget that carers are caring for someone who they love and have such a strong attachment to, and that’s the hardest part; it’s not just the practical aspects, it’s the mental and emotional support too, and the emotional effect it has on you.”
Commenting on being ‘Prepared to Care’ – the theme for this year’s Carers Week – Laura says “Now I know where to find all the information I need, but when I started caring I had no idea and it wasn’t easy to find; I didn’t know where to look and because I didn’t think of myself as a carer I didn’t search in the right places.
Support groups are a fantastic way to learn from others and prepare for what’s ahead, but they need to make themselves more visible to people who don’t identify themselves as carers.
I think that the idea of the Triangle of Care (which asks health professionals to work together with both patient and carer) is a great idea – you need all the information and coordination to be properly prepared – as long as it works. But processes in mental health care can be very slow, and waiting for decisions adds to the stress for the carer as well as the patient. Professionals also need to stop trying to send people home from mental health units when it would be damaging for both the patient and the carer.”
Julie’s* husband Keith* had been ill for some time, including developing diabetes and having a heart attack, before he had his first stroke. Although Keith was in a lot of discomfort following the stroke, and some aspects of his personality changed, because the stroke had affected his left side, Keith was able to remain active. Julie enrolled them both in an IT course to promote Keith’s co-ordination and they both did well; Keith even went on to complete a computer maintenance course.
But unfortunately Keith went on to lose the sight in his right eye following a cataracts operation, and later had a second stroke, this time affecting his right side. This second stroke was devastating, leaving Keith paralysed on his right side and without speech or memory.
Although Keith has made some significant improvements, following years of intense and dedicated care from Julie, Julie still provides round the clock care, working hard with Keith every day trying to help him improve.
Julie says, “What no-one prepares you for is the change in your role and in your relationship. I went from having a strapping husband to having a large child. Although he understood what I was saying, he couldn’t respond. Now he does remember who I am and can have a basic conversation, but my role is still very different. I’m not just his wife, I’m his mother, his minder, his housekeeper – I’m everything. And his world has shrunk from being a worldwide traveller to more or less living in two rooms.
“When Keith was in hospital I had to learn how to administer his injections and how to feed him. When he came home, that was it – there was no after care, no-one to help. I was alone with him, and every day was awful. After a while people stop visiting and they’re scared of what you might ask them to help with.
“It’s difficult to know where to turn. Luckily someone told me about Carers in Hertfordshire and that’s been one of the best things that’s happened to me as it’s given me a lot of information and support that I wouldn’t otherwise have had. But what you need is information as soon as something like this happens; you need informed people telling you where to go, who to talk to, what you’re entitled to and how to get it.
“You also need someone to explain the after effects of the stroke; not just the immediate effects on his capabilities, but the ongoing things. For example, Keith can only sleep for 3 hours a night, and wakes at 1am and needs a meal. So I’m struggling with sleep deprivation alongside everything else.
“My social worker gave me some good guidance and advice, but that was after a long fight to get a social worker, and I had to fight hard to get a care plan too. The problem is that everything takes so long – you’re always put on a waiting list – and when you’re in our position you simply can’t wait for help, you need it straight away.
“Now I’m facing health difficulties of my own – following a fall I can’t use one of my hands, which is always in a splint, and I’m waiting for an operation on my knee so my own mobility is limited. But I still have to do everything around the house because there’s no-one to help me. And I can’t get out to the doctor or hospital easily, because I can’t leave Keith.
“Keith can’t go out on his own, because he has post-stroke seizures and part of the problem is that people in the community don’t understand and don’t know how to respond. He often gets ignored having a seizure because people think he’s drunk – he’s even been mugged during a seizure – so Keith really needs to have someone with him all the time. Everyone needs to be prepared, not just the carer. We need a public stroke awareness campaign so that everyone understands strokes and the after effects and understands how to help.”
*Names have been changed for confidentiality.