My name is Muriel and I care for my husband John. We have been married for 47 years and John has been ill, in one form or another, for at least 23 of those years.
Keeping John motivated is difficult. I need to deal with the outside world in whatever form that takes. This includes professional medical staff and social care staff. This can sometimes make me 'the enemy' in John's mind.
Wheelchair bound and oxygen dependent he also has to sleep on a ventilator. It can be very difficult to care for him as sympathy, although I feel it, will not help us on a practical level. Currently, to add to our burden John is showing signs of confusion in his memory functions.
Knowsley Carers Centre probably saved my sanity! After a stroke in 2004, through counselling, I learnt to cope better. I now use the Carers Centre's facilities, of which there are many. I now know there is always someone to turn to for help. Respite funding from Social Services also helps but this has faced drastic cuts due to the current financial climate.
I am now a member of Carers Vision. This group meets at Knowsley Carers Centre in Kirkby. We have all been trained to help facilitate carer awareness training. We meet professional groups as well as Patient Participation Groups to tell them what being a carer is really like; it's about having total responsibility for another human being. The members of this group do not seek pity but want to show the everyday, constant battles carers face.
We all care for our loved ones because we want to love and protect them. As a full time carer this can destroy you as a person: but if you receive the right support and help it can also be a rewarding experience.
I am a carer for my Dad, Bill who is 92, severely sight impaired, (blind) and severely hearing impaired, (deaf). I have been a carer since the age of 11 but have become a fulltime carer since leaving Knowsley Education Department in January 2010. When I noticed that my Dad was struggling to cope with his impairments I moved my Dad to a bungalow from an upstairs flat for his safety and convenience and since the move I have visited him practically every day for the last eighteen months.
The main difficulty I have encountered is trying to be recognised as a carer and wanting to be able to work in partnership and harmony with health practitioners especially my Dad's surgery. It has taken time and patience and guidance from the Knowsley Carers Team to be able to say that at last I am being listened to. After all, I know far more about my Dad than they do.
Without a shadow of a doubt, registering with Knowsley Carers Centre has helped me tremendously; being made aware of the Carers Emergency Card, the help that is on hand for financial and practical matters such as the advice I got to make an appointment with the practice manager at my Dad's surgery was a great help, holistic therapies which leave you calm and feeling well in order to face the day ahead, counselling and days out have all given me the feel good factor and this has then passed onto my Dad. The NHS hospitals in Knowsley that we have visited when my Dad hasn't been well have provided fantastic treatment and the care has been second to none. Joining Carers Vision has given me the confidence to talk about my caring role and then to be able to go back and tell my dad all about the day. I firmly believe that carers want to care because of their human decency and love and with a little help as shown above we can do it and help our loved ones; safe and happy.
Training social workers about Carers Assessments -
A positive experience
Hi, my name is Ian McBrias and I care for my son who has autism. Together with five other carers I was invited to join a training group at Knowsley Carers Centre. The aim of the course was to support carers to deliver the views of carers to professionals such as GP practice staff and social workers with regard to issues that we come up against on a day to day basis.
Over four sessions Jan and Angela worked on our confidence and explained to us that we were the experts in our field, we lived and breathed the real life caring role and that what experts and health professionals would learn from us directly they would never be able to acquire from a book. We would be able to tell the professionals exactly how it is. During the four weeks of training I noticed the confidence grow in the group as a whole and by the end of the training we were looking forward to delivering training about carers assessments to a group of social workers.
Jan and Angela explained to us that we would each be on a table with a member of the Knowsley Carers Centre and approximately seven social workers. At no point would we be left alone; we would be co-facilitating with a member of staff from the Carers Centre and we could add our own views as topics and issues were raised. We watched a video of real life carers talking about their lives and issues that they face on a day to day basis (many of which I could relate to on a personal level) and then we discussed each person and spoke briefly about the type of help and support that they needed and would be able to access. We then read out a mock situation and the social workers were encouraged to think for themselves and come up with answers that we as carers would be looking for in the real world. The social workers at my table asked the right sort of questions, they gave responses that had it been real life I'd have been happy with, but what I really took from the session was that these were social workers who really seemed to care for the needs of me as a carer and me as a person.
Following the training I rang the KAT Team (Knowsley Access Team) and asked for a Carers Assessment as I had had one previously but it hadn't gone too well; it was very long winded and took place in front of my son. I wanted to see if things had really changed and I'm pleased to say that my carers' assessment was everything that the last one wasn't. I was asked if I'd like my assessment to take place on my own, or with my partner or son present. This was so important to me because it's hard enough at times caring for someone and the last thing I would want to do is speak about him in a negative way in front of him. The Carers Assessment is broken up into eight sections and you speak about exactly what you want to. So if for example you only wanted to speak about breaks, then that is all you would talk about.The new Carers Assessment is set out to help you as an individual so you can concentrate on what is important to you. My Carers Assessment took approx 20 minutes in total and the social worker was polite and seemed to care for my needs as a carer.
Since joining the training group and doing the sessions with the social workers I have found that my confidence has grown. Recently I was able to do a presentation at the 5 Boroughs Partnership 10th Birthday Awards Day and again at the Older Peoples Voice AGM which seemed to go down really well. I have also joined my local PPG (Patient Participation Group) at my doctor's surgery and was asked along to join the CPB (Carers Partnership Board) which gives a voice to all carers throughout Knowsley. I would put all of this down to me initially joining the training group at the Knowsley Carers Centre which gave me the confidence to proceed.
Hi my name is Angela I have been a carer for 27 years looking after my daughter with a lifelong haematology condition. It's not just the hospital runs and meeting with so many doctors, consultants, professors, being a carer is one of the most hardest things I have ever done in my life. It has also been the most educational and challenging experience and if I could change it I wouldn't. As a carer I believe it's so important that all Carers are aware of their rights and the support that is available for them because if you are caring on your own and have no support there is a danger of depression and many other elements. So really to all Carers it's so important for mental well being and positive mind and healthy caring that you get support .The Carers Centre was mine and was I glad I linked into them. The Carers Centre helped me to get back into work because at that time I had finished my studies to be a holistic therapist and had a vision for the Carers Centre to deliver a holistic approach to caring and they believed in this and that was it, therapies for all Carers was available and still is now to this day. The Cares Centre has so many things to tap into and the help from the support workers is great. As a carer now my duties are not as busy as they have been and I'm going back into the job I would love to do. With the help from the Cares Centre I am now looking to do a project management course and take all my 27 years of experience helping to shape the future of the way our health care is delivered. By having the support from the Centre I've also done the carers facilitator training and also been asked to chair my GP's Patient Participation Group. Being involved has helped me so much to keep the vision for me alive despite all the caring duties.