carers' resource information and support

Carers Stories

Nigel – looks after his wife who had a stroke - Dorchester

Nigel web               

I started caring when my wife had a stroke five years ago. The stroke left her less with physical incapacity, but she was particularly affected with memory loss and difficulty in saying what she wants to say. She already had some mobility difficulties due to Osteomyelitis as a child which made her legs weak and she recently suffered a broken bone in her leg.

A lot of the time if we go out, we have to go out with the wheelchair. In terms of day to day living, I’ve had to take on responsibilities such as, most of the cooking, washing, ironing, helping my wife get up in the mornings, managing medications and medical appointments, basically looking after her and trying to look after the house and garden as well.

Caring for someone can be quite demanding and there’s rarely much let up and so it’s important that we look at ways in which we can look after ourselves.

I started to think, what happens if something happens to me, how is my wife going to be able to continue? I saw some information in my doctor’s surgery about help for carers and I thought, ‘is that for me?’ As I’ve taken on more and more additional responsibilities I’ve become more conscious that I am a carer but it didn’t strike me at first when my wife first had the stroke.

I attended a carers support service event about five months ago and met some other carers and through that I picked up some more information about what I may be able to get help with and I began to realise that there was a whole support structure out there that I hadn’t been aware of.

I think people in similar positions as me need to recognise that they are a carer. They should let their doctor know that they are a carer and also it’s important that they find out what support is available through the Carers’ Support Service. I think people should speak up and accept help when it’s offered and say when they’re not coping.

Louise Maycock – looks after her son who has autism - Bournemouth

Louise web

I look after my son (aged 14) who has severe autism and I’m a full time carer. His care involves everything you would do for a baby. His care is 24/7, I have to keep my eye on him all the time. He has aggressive behaviour and that is very challenging.

I am a carer and that is my job so I’m more than just a mum and I think it’s important for other parents in my position to realise that although they may not be able to work they are working. Being a carer is a job and so I don’t think people should be worried about calling themselves carers. I feel very proud to be a carer and I will be doing all I can for the rest of my life as long as I’m able. I know some people think that being a carer carries a stigma and it’s something to be ashamed of but I think people should be proud, you’re not just doing a service for your loved one you’re doing a service to the community you live in.

We’ve used the respite care breaks through the Carer’s Support Service, we were one of the first families to stay there and we really appreciated it and our older son and other family members really enjoy it. It’s a fantastic resource as it’s hard to get breaks away from caring.

There’s a lot of benefits to signing up to the Carers’ Support Service. There’s a lot of activities and it’s also a social thing, often you lose your social life when you become a carer. It allows you to have a bit more of a life than you thought you’d be able to.

Sue Spender – looks after her elderly mother and supports her father - Bournemouth

Sue web

After my mother came out of hospital in a wheelchair she needed more care. I’ve been caring for my mother whilst still trying to work and I look after both my mother and father to try and lead an independent life as they can.

I’m almost like a care manager so I look for opportunities to help my mother. For example, I’ve arranged for her to have hydrotherapy to help keep her moving, keep her healthy and keep her out of hospital.  My dad is in his eighties and without the carers’ support service he would be home alone and wouldn’t know about all the support available. My dad loves the carers’ lodge in Weymouth and he loves the carers’ evenings where he can take my mum as well because these events make him feel happy and confident.

Being a carer is a job that many people don’t think they’ve got. I’ve found I’ve had to learn a lot of things as I’ve gone along and you don’t necessarily have all the skills needed and as a carer you can feel quite vulnerable. The carers’ support service has been a big help. I’ve been on a funded first aid course, you can phone them up and they’ve given my dad support.

If you’re unsure whether the carers’ support service is for you, speak to them first. They are good at signposting, for listening to you, and sometimes to help you realise that something shouldn’t be happening and what situations can be helped.

It’s very hard for carers like myself. My situation can be difficult because although my father looks after my mother he doesn’t always seek information and help and yet he is making many of the important decisions about my mother’s care and I have to be the one that sometimes questions things and seeks out the right help and support.

Lynnet Williams – looks after her teenage son who has Cerebral Palsy - Wimborne

Lynnet web

I’ve been looking after my son since he was a baby but the ‘caring’ aspect rather creeps up on you, and as he’s got older he has required substantial looking after and attention. It takes over your life and stops you having a full-time job. It’s a role that doesn’t have an end really, which is sometimes difficult to get your head around.

 I think people need to take a very realistic look at their circumstances and realise that in a different situation they wouldn’t be doing all this caring. We do it because we do it, because we are a parent or we are a husband or wife but very often like me, becoming a carer is a gradual process. It’s not that we don’t want to do it; we do it willingly and with love.  Most of the carers I’ve met are highly dedicated but some are loath to describe themselves as carers. I think more carers need to recognise this and take advantage of the support on offer.

Jacqueline Wilson – Looks after her elderly step father who has mixed dementia and sister with severe learning disabilities - Poole

Jacqueline web

My step father has mixed dementia as well as a lot of health problems including, heart failure, kidney failure and lung problems. I also look after my sister who has severe learning difficulties.

The carers’ support service has been brilliant, they’ve listened to all my rantings and ravings and they’ve reassured me that things will be ok. The carers’ discount card is great and the events are terrific. If I didn’t have the opportunity to get out occasionally I’d go mad. I love the carers’ choir it’s great fun and we go and sing in different venues including care homes.

I’d recommend that people sign up and register as a carer because once you’re registered some of the stress can be taken off you. There are people who are more than willing to help, but if they don’t know you’re there, they can’t help. You’ll have a whole set of resources and know how to go about it, and where to go. The problem sometimes with being a carer, is although I have loads of friends, they don’t always understand what it’s like being a carer. Whereas, when I’m with other carers and I’m having a bad day I get a hug and reassurance and they understand.

Carers have a really rough end of the deal, we’re unpaid, not respected and we plod on regardless and most of the time when a carer says they’ve done enough they’ve already done 110%. It’s important that carers aren’t pushed to breaking point and that there’s help for them.

Margaret Stark – looks after her husband who has dementia - Bournemouth

Margaret web

There’s some things my husband can do himself but I do have to be aware of what he is doing from when we first get up in the morning. I make sure that he’s had a wash and I write notes of what is happening for the day otherwise he gets worried about where we are going to be or what we are going to do. He also has difficulties with his knees and can’t walk like he used to which is very frustrating for him. We have the number for Carers in Crisis if I get in to difficulties or have an accident it’s reassuring so you don’t have to worry and we always have the team at the carers’ support service.

Just knowing the carer’s support service is there is very reassuring, and they arrange lots of lovely things. It’s the comradery especially the carers’ choir that really helps me.

I would recommend others sign up for the carers’ service. I had a rough time one Christmas and I had to go to the doctors because it had got that bad and he suggested I should register as a carer and put me in touch with the service. It’s so important other carers get help – carers are precious. If you want to keep caring for the one you love you need that support.