A LOCAL resident has shared his experience of being an unpaid carer in Melksham and praised local charities for their support.
Marcus has been an unpaid carer for his wife for three years, following her diagnosis with a degenerative brain disease called Progressive Supranuclear Palsy (PSP) in December 2021.
He said, “There is no cure and no medication that can really assist with it. It’s more palliative care to make her comfortable. That was after a long trial of trying to get a diagnosis and we went from stress to Parkinson’s to this diagnosis, so that was quite difficult and stressful. She had to leave work because of that.
“She was sleeping upstairs, now she is downstairs in a hospital bed, we have had to convert the house so that we have a room downstairs with a wet room in, put ramps in. We are trying to deal with the different situations as they arise and when we do, the condition degenerates.”
Marcus has praised the support of local charities such as Dorothy House, Parkinson’s UK and Carer Support Wiltshire which helped them access funds from Wiltshire Council to pay for respite care to enable Marcus to go out, leaving his wife with a carer.
He said, “Carer Support Wiltshire has been really good. The NHS has been brilliant, we get health professionals coming in, I can’t fault them for what they are doing but they are limited. Dorothy House has been hugely supportive, given my wife counselling and they have been there in the background and we know we can lean on them.
“I would recommend anybody who ends up with a diagnosis, a life-limiting one, is to approach a charity for that illness to get help and assistance.”
Like many unpaid carers across the country, Marcus has needed to navigate government systems to access support.
He said, “It took us nine months to get an answer as to whether my wife would get a Personal Independence Payment (PIP) or not. In the end we submitted about 60 pages of stuff and then she had to have an interview as well, we recently had a review where I had to submit probably another 20 pages to back up that my wife is getting worse.
“Even when you are in the system, they keep an eye on you and check up on you. It is difficult to get PIP and you really do have to read the form to work it out. It would be quite easy to put the wrong things down and then you don’t get it or you get half the amount, just because of the way you answered the question. That’s why I would say approach the charity directly, so they can help you go through stuff.”
Currently in the UK, the value of unpaid carers is reported to be £62bn, matching the value of the NHS budget.
When asked if he thinks the government could be doing more to help unpaid carers Marcus said, “I can manage with most things, but I think if you were in your 80s you would need more help than you would necessarily get. Then you get into the ball park of ‘how much money have you got in the bank.’
“It would be good for the government to provide more money for people to have respite care. The money you get from the council is really nice and really good but when you are looking at [paying] £30 an hour, that’s not a lot of hours over a month. I am in the fortunate position where I have access to a firefighter pension, but if you don’t have another stream of income, I don’t know how you would cope.”
In this year’s Carers Week Report, one in five people are reported to be giving unpaid care or support to someone. Marcus said, “Due to my age, if I go to some care groups, they are for people who are older than me and dealing with people who have got Alzheimer’s. It’s difficult to find someone you can talk to.
“Isolation can be one of the worst things about it. The biggest problem is a lot of people take a big step backwards. That includes family and friends as well, because they don’t know how to deal with the situation. Your whole world shrinks, it gets smaller and smaller. Every day, is repetitive and you are limited as to what you can do and where you can go.”
