Carer stories

Carers are all ages and from all backgrounds. Many won’t describe themselves as a Carer, it’s just what they do for their husband, wife, partner, family member, friend or neighbour. Everyone’s experience as a Carer is different. Here some Carers share what it’s like for them, and why accessing information and support is so vital to their well-being.

“I’ve only had 3 full weeks' break in 4 years”

Kay lives with her husband in a small village near the south coast. She moved there with her husband when they retired. When a few years ago her husband was diagnosed with vascular dementia it was a real shock.

“It has changed our lives enormously. My husband’s condition has deteriorated. He can do very little for himself and being a Carer takes up almost all of my time. I’ve had to give up many of the pursuits I enjoyed. I got involved with a local Carers organisation which led to a Carer assessment. I now get a little help with respite to get a few hours a week to myself. I’ve only had 3 full weeks break in 4 years. It’s really exhausting and a strain mentally and emotionally. Having more weeks off would really help me keep going.”

“I went on training and got support from people I met. After doing this all alone, it made a major difference."

James is a Carer for his dad who has a heart condition and also has mental health problems.

“My dad had been my mum’s Carer but after she died he became ill and needed looking after. I tried to help but so much was needed. I was doing my best but didn’t know how I could do it all. After contacting my local Carer organisation I realised I was isolated. I went on training and got support from people I met. After doing this all alone, it made a major difference.

“Going to a Carers' organisation proved to be one of the best things I've done”

Clive has been a Carer for his wife for 6 years since she had an accident and became disabled.

“I had to give up my job and accept that our lives would change. We moved from having a good income to living on benefits. My old life with a busy and demanding job were gone for good. I started to become easily upset and unable to deal with any stressful situation. I wondered how much longer I could carry on. Going to a Carers' organisation proved to be one of the best things I’ve done. I’m now volunteering for them, using some of my old skills and feeling valued again.”

“I’ve not really told anyone at school that I’m a Carer”

Emma is a Carer for her mum who has mental health problems.

I spend a lot of time trying to shield my younger sister from having to deal with everything. Sometimes it can affect how I’m feeling. I could be having the most amazing day ever and I walk in the house and mum’s having a bad day and all that’s happened disappears. I do struggle at school due to me being tired from all the things I have to do at home. I get quite agitated about how mum is and in my free periods I usually go home to check on mum. My school attendance is pretty low and I find it hard to get my coursework done in time. I’ve not really told anyone at school that I’m a Carer.

“As my wife’s full-time Carer I’m exhausted”

M is a full-time Carer for his 85 year old wife who has dementia and requires constant supervision.

“She gets very fidgety and wanders constantly - she is known for wandering out of the house on to the main road if someone isn’t with her all the time. As my wife’s full time Carer, I’m exhausted.  Through Crossroads Care in Kent I have been able to get some regular time off each week, to have a break and work on my allotment.  They have also been able to provide replacement care for my wife when necessary so that I can attend health appointments myself – I have angina."

“Becoming a Carer to a previously independent young adult is very emotional and distressing”

T cares for his son who is experiencing mental health problems.

“Becoming a carer to a previously independent young adult is very emotional and distressing, one which impacts on the whole family, affecting both their personal and work life. The suddenness of this situation makes you realise that a change in one’s mental health can happen to anyone. Receiving non-judgmental advice and support from a carer organisation has been invaluable to me and my family at a time of crisis. Initially, it was difficult to focus on anything else but the situation and the stigma that accompanies it but with the immediate and ongoing support, we have been more able to cope and know how to support our son and each other."

“I’ve realised that I am a good, calm, patient Carer."

Gill cares for her husband who has Lewy Body Dementia.

“ I gradually took on a caring role for my husband as his health deteriorated. He ceased to be independent from 2014. He can’t choose his clothes, do any personal care himself, needs help getting dressed, getting in and out of bed, toileting, food and drink. I don’t like to leave him on his own. He rarely realises I am his wife. He sees me as male and female, friends, former work colleagues, family members and strangers at various times. I have learnt to live with him in his own world without contradiction.

Aside from the 2 visits he makes to a day centre each week and 3 hours every Friday when someone comes to sit with him, I care for him 24/7.I also work – just three hours a day - but I have to get up at 5 am to fit my hours around my caring role which is emotionally exhausting.

The positives of being a Carers are that I feel even closer to my husband I’ve realised that I am a good, calm, patient Carer. I’ve made lots of new friends through becoming a Carer too and I’m part of an online network which provides support and laughter to those in the same boat across the world.  

The loss of freedom is the hardest thing for me. I feel very tired and it’s a strain. I feel a pressure to stay fit and healthy but it’s difficult finding time to manage my own health issues. It’s very wearing being constantly concerned for someone else but it’s also difficult to face up to the need for some respite care every now and then.

Being a Carer can be horrendously challenging. Good support and getting some regular respite are both vital for me."

“I want to make sure unpaid Carer’s voices are heard"

Katy lives in Canterbury and cares for her husband Mark who has a rare progressive form of Motor Neurone Disease called Kennedy’s disease. She also campaigns to ensure unpaid Carers voices are heard and volunteers with Mark for the Motor Neurone Disease Association to raise awareness of the disease.

"We were once two professionals and our lives have been devastated by Mark’s condition. As a teacher, I had earned £150 a day and now I receive £62.10 in Carers’ allowance a week for providing never ending care and support for my husband.

Mark was forced to retire at 46, and although our income had fallen off a cliff, our bills continued to increase. We often have to travel miles and miles to receive care and have had to make adaptions to our home which were paid for with savings that we will never be able to replace. Mark has gone from being physically active to depending on crutches and a wheelchair to get around. At night, he breathes with the help of a machine that supports his weakened chest muscles.

I have found that the gulf between unpaid Carer's voices and the rest of society is so great that I want to make sure unpaid Carer's voices are heard. Never before have I felt so unappreciated by government or so abandoned.

We were invited to speak at the All Party Parliamentary Group on Motor Neurone Disease in Parliament when the Welfare Reform and Work Bill was being debated. Like many others we were worried about the impact of the Bill on disabled people and their Carers.

I’ve also been very involved in trying to get the Government to move on the Carers’ Consultation that started with the submission of evidence from Carers last March. It has annoyed me no end that nothing has been done to publish the new Carers' Strategy

I welcome my Carer’s Assessment each year through Carers’ Support – Canterbury, Dover and Thanet. It is the one time of the year when I reflect on how my life has changed and what I am doing extra for Mark. When you are dealing with life day-to-day you often don’t reflect on what is different or has changed over the year. With a progressive, degenerative condition it is easy to forget what Mark could once do and can no longer manage. I look at the balance of my life, my own welfare and what I do as a volunteer at this time. Carers’ Support come up with suggestions and we look at any other support that might be available for me. 

I see too many unpaid Carers who have never had a Carer’s Assessment, few who identify themselves as Carers and many who are not signposted to the support and services available to them. I want that to change."

“It is pretty hard but it's my place to looks after her and we try to keep positive"

George is 87 and lives in Maidstone. He cares for his 86 year old wife Noreen.

"Noreen has dementia and spinal problems. I have to get and cook all meals and make sure she has her tablets so I have made a chart to enable me to do this efficiently. I also try to take Noreen out in our car a couple of times a week to new surroundings for us to see and enjoy.

It is very difficult for me to go out alone, but we have a care support worker from Crossroads Care Kent every Monday afternoon which enables me to have a bit of free time to go out for shopping and I’ve also had support from Involve Kent. We also have a care support worker who washes and dresses Noreen every morning.

Fortunately, we have a very good family to help us, although we lost our daughter in October 2016 through cancer. I have to say our GP surgery has been marvellous to us both.”

“I need to be constantly alert and aware so I can’t switch off at all. This is a 24/7 situation."

Wendy is 72 and lives in Whitstable. She has been caring for her husband for 15 years.

“My husband has an unspecified cognitive impairment which is like dementia but not Alzheimers. It manifests itself in a personality change and difficult behaviours.  He also has Type 2 diabetes and sleep apnoea. I’ve been looking after him for over 15 years but it’s now difficult to leave him by himself because he does potentially  dangerous or silly things.  He is a smoker and the behaviour associated with this can put him and myself at risk.

On a practical level, I have to remind him to shower and look after his personal hygiene, prepare all his food, put his shoes and socks on, sort out all his medication, take him to numerous hospital appointments. I have to do the shopping when he is at the day centre as he is too difficult to take with me.

For me, the overriding thing about being his Carer is the total and utter exhaustion. My husband doesn’t sleep and I can frequently still be up with him at 3.30 or 4.30 in the morning so I don’t get any proper sleep myself. I need to be constantly alert and aware so I can’t switch off at all.

My husband goes to a day centre two days a week and to a specialist ‘COGS’ support group for people with cognitive impairment run by Age UK in Herne Bay.  Crossroads Care Kent  also provide someone to sit with him for 3 hours every week so I can go swimming. In addition we get a Carer 20 days a year through Volcare who will stay in our house so I can visit my family and friends who live in other parts of the country. Without that I’d never get away.

I couldn’t manage without this support but I really need more respite care, especially for overnights so I can get a good night’s sleep. Because of my husband’s pension we have to pay for this and  any additional support and I constantly need to balance the high cost of paying for this against my huge need for a break. 

My own health has suffered. I have high blood pressure and high cholesterol not helped by stress.  I have also recently had an operation to remove my gall bladder.  It helps that my GP is aware that I’m a Carer and is very supportive."