'I don't know a full night's sleep': Elderly unpaid carers suffering physical and mental health

In a special report, ITV News Scotland Correspondent Peter Smith heard from a mother who has spent more than half of her life as an unpaid carer for her son and fears what his future will hold when she dies

Almost all elderly carers in Scotland say the their physical and mental health is suffering amid a caring crisis hitting the country, according to recent data seen by ITV News. 

Our reporting has highlighted physical and financial pressures on unpaid carers, who are living on a carer's allowance of just over £350 a month in Scotland.

But the latest data shared with us shows how the strain on elderly carers is even more acute. 

The Carers Trust Scotland found that 80% of elderly carers say their physical health is being harmed.

Even more, at 87%, say their mental health and wellbeing is suffering.

And almost half - 46% - say they have had to miss a health appointment for themselves in the last 12 months, due to their caring role.

We spoke to Jessie, who will be 80 next year. She lives alone with her 44-year-old son, Andrew, who has a learning disability and is partially paralysed.

Every day, Jessie still washes Andrew, carries him, and feeds him. The pair share a bedroom near the Fife coastal town of Angus. 

"I don't know what it is to have a full night's sleep," Jessie told ITV News. 

This is not how Jessie thought she would spend her retirement.

"I think when Andrew was born I thought he would grow up and fly the nest, or that there would be more support," she added.  

"I don't have any choice other than to just keep going, and I'll still be caring for my son until the day I die.

"My biggest worry is what will happen to Andrew when I'm no longer here. 

"I don't wish for it, hope for it, but I sometimes think it would be better if he were to die before me."

This fear about what happens after they are gone is now one of the biggest worries for parents like Jessie.

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"There just isn't enough community care for vulnerable people like my son," she said. 

"I have written in my will that I want Andrew to remain in his own home when I pass away, to get the same care I have always given him. He deserves that.

"But it would come down to cost. I worry it will be decided that it's too expensive to give him care in his own home, so he would just end up being sent to one of those elderly care homes for people with dementia, or he would be locked away in a hospital."

There are about 118,000 people like Jessie in Scotland, who are over the age of 65 and still doing the work of a carer.

The UK has a critical shortage in trained care workers and facilities, meaning some adults with learning disabilities are being sent to live in homes for the elderly just to fill the gap.

Beth Friel from Carers Trust Scotland, told ITV News that Jessie's concerns are increasingly common and part of a growing crisis in social care.

"What we have found in our research is there's generally a deep concern about the future from elderly carers," she said.

"We know people with learning disabilities are living longer due to medical advances, which is great and welcomed by families. 

"But we have to also recognise that adds pressure on those who care for them, usually the parents, and they're now doing this caring role for their entire lives.

"What we are asking for, especially in Carers' Week, is that unpaid carers are identified and given the appreciation for their role, but also it's important to make sure they know their rights and get access to support.

"No parent should wish their child passes before them, but it highlights how deep the frustration is."

In a statement, the Scottish government told ITV News that carers "should speak with their local carer centre and social work department to find out what support is available".

The UK government said they "continue to provide financial support to unpaid carers throughout the UK".

Jessie has dedicated her life to giving Andrew the care he needs. But after all she has put in, she says she feels taken for granted, under-appreciated, and unseen.

She said: "Sometimes I just wish I had someone to talk to."

"No one realises how much I've done for my disabled son. 

"The government, council, social workers they all need to get a grip of themselves and give the support to the vulnerable people."

At a time in her life Jessie hoped she would have peace of mind, instead she has sleepless nights, backache, and worry.

And like so many elderly carers, she can only look ahead with fear.