Expert by Experience


No one applies to be a carer in the family, neither is there an instruction manual, or in the beginning much information or support.

I am seventy-nine my husband seventy-seven. Over the past five years he has become less and less mobile due to vascular problems, and I have taken on more and more of house hold maintenance and heavy gardening. That is not to say I am exceptionally fit and agile, but someone has to do it.  I’ve had a mastectomy, chemo etc. and have heart failure.  

In July last year he was diagnosed with Pulmonary Fibroses there is no cure and it will end his life. Some may say at seventy-seven he is at the end of his life and we all die of something, which we accept. But since that diagnoses from the consultant, where we were given a leaflet on the condition, a copy of the letter to the GP written in medical terms. We were left to get on with it until last month March 2022. At the July visit we were asked any questions, when we had just been stunned by the diagnoses.

We have had Oxygen delivered, an O.T check our home, plus fire service. We applied for a grant to help put in a wet room and help in repairing a leaking roof area. Because my husband will at some point not be able to use the stairs. (Home not suitable for stair lift, or lift) But were refused because we both have a small private pension (encouraged to do by the government and our places where we worked.) We were not asked our outgoing or anything else. My pension is £350.00 a month, my husband’s £600.00 a month, plus our retirement pension we paid for while working. We have no savings. I borrowed money to put in a built in shower down stairs, which has given us a debt.

I am now a full time carer and have registered as a full time carer, had a carer’s assessment. Registered with my GP as a carer. Met people who do their best to help and support. But unless we change our culture and view of those that give up their lives to care for a relative or friend and value and respect what they do, nothing will change.

When consultant gives you a diagnoses and not time to take in what is said and time to assimilate questions, and you hear nothing from the respiratory department until eight months later, and a carer is left with the person, who has anxiety attacks, breathing difficulties that are getting worse as time goes on, lung infections, and expected to care for them without enough information and no one to speck to, it adds to their stress and makes them mentally ill. It is impossible to talk to our GP, or see them.

An O.T. who visit you in your home, and dismisses the person who does the main caring and refers to them as the “The toe nail cutter” makes a carer feel small undervalued, I found it very hurtful.  Doctors and G.Ps who see you are old and talk very loudly and slowly to you. Clinicians who if dealing with a physical condition ignore any mental health condition, yet expect the carer to deal with both.

As a carer the most important thing for us is for the person we care for to be given the highest support they can be given throughout their illness, and to keep both the unwell person and the carer informed. The most important thing for a carer is the health and well-being of the person they are supporting. That helps a carer think more about themselves. Carers can often feel they are invisible to the NHS staff and social services, they need to feel valued however small it is thought their contribution is.

Young and Old Carers, the forgotten ones, its hard work, isolating, lonely and at times frightening to be responsible for the care of someone else, and expected to be able to do it, without being asked if you want to or can do it, for all carers. But often a child carer goes unnoticed, schools need lessons on carers what they are and do giving a young carer a chance to speak out and find help. Retired carers often do not always recognise they are carers and the role is just expected, because they are though of not having much else to do. Their own health can be a challenge, and if they are dealing with forms of dementure as well they have aggression and being undervalued by the person they are supporting, other family members expect them to do the caring, as they are not working, or will disrupt their life, so cannot be visited.

Support is being listened too and heard, getting people connected, peer support, not Just carer groups. But paid Peers who can offer understanding support to another carer, reach out and befriend them. Paid respite where a carer can take the person they care for if that works for them. A decent payment that does not stop when you retire, at the moment it is a insult, and not every carer is entitled, yet they all do the same work. Easier forms to fill in for financial support, life is difficult enough without the added stress of finding time to fill in endless pages.

Every meeting concerning carers needs to be co-produced, no one should decide what a person requires if they have never been involved in the task. You wouldn’t tell someone how to fly a plane or operate on a brain without having done either yourself. Carers should be involved, from different communities. It makes sense that the people involved have more idea of what would help, than someone who has never had to care for a person over a long period of time.

But sadly until carers are valued for what they do, and recognised as an essential part of the care force by all agencies, and more money put in the pot, it will never happen.


12 May 2022