Glasgow-based dementia charity 'could fold as funds dry up'

Dementia charity TIDE helps carers and former carers with practical support as well as influencing Government policy development. 

But the effects of the pandemic, changes to charitable funding pots and the cost-of-living crisis has hit the organisation hard. 

Now chief officer Samantha Bolan has told the Glasgow Times the charity has enough money to run until April and then it faces folding.

She said: "We have only been able to push the wolf away from the door for 10 to 12 months at a time and now we, like other charities, are really struggling.

"More organisations are going for fewer funding pots and donations are down. We want to keep going but we are keeping going with the knowledge it is so precarious."

TIDE supports dementia carers across the UK but has a Glasgow base supporting hundreds of carers.

One long-standing member of TIDE was behind the call for Anne's Law, put into practice by the Scottish Government to allow families to see their loved ones in care homes during the pandemic.

TIDE members have told how vital the service is to them, and how devastating it would be if the charity folds.

Ray Fallan's husband James began to show the first signs of dementia when he was just 50-years-old. 

He had two very rare forms of the illness - corticobasal degeneration (CBD), a very rare progressive brain disease; and frontotemporal lobe dementia, another rare form of the illness that causes problems with speech and behaviour. 

Despite Ray's repeated calls to medics and social work for help, it took five years before he was diagnosed.

Doctors believed he had mental health problems and he was referred to a psychiatrist.

As his presentation declined, James was sectioned for eight months with Ray fighting to have him released.

His hospitalisation meant the couple lost what would be some of James' final months together. 

She was sure there was something terribly wrong with her husband but no one would listen. 

Ray, from Shotts, described James as a dedicated family man and workaholic who did everything he could to provide for his two girls, as well as being active in the community.

Ray and James met at a disco when they were just 20 and 22 and it was a whirlwind romance.

She was outside having a cigarette when James approached and said: "If you don't put that out, I won't walk you home".

Ray remembers thinking "who does this guy think he is?" but she decided to take a chance on him and that was that.

One Christmas Eve he gave her a letter detailing how he'd planned their wedding and shortly after they were married at Gretna Green.

They have two daughters, Charlene, now 37, and Dana, now 34, and two granddaughters. 

James' mum and brother had died within a short time of one another and, at first, Ray thought he was depressed.

But then she began to believe there was something else at play as he developed physical ticks, hallucinations and became aggressive.

The 59-year-old said: "He was a really confident guy but suddenly he was not confident.

"There were all these things happening with him that I couldn't get my head around."

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Ray was certain her husband was being misdiagnosed and went to an appointment with him to try to appeal directly to the psychiatrist.

During the appointment he had spasms and ticks but the doctor said it was likely a side effect of the drugs he was on.

Ray, who worked for a pharmaceutical company at the time, did her own research and suggested to doctors it was CBD but she was ignored.

Eventually James was becoming dangerous and medics sectioned him, keeping him detained in hospital from November 2016 to June 2017.

Just two weeks after his release, James lost all mobility and ended up bedridden, needing round-the-clock care.

Ray is 4ft 10in and James was 17 stone but she was left to carry out all of James' personal care and move him.  

Ray said: "But his palliative care was removed and they left me alone with him. 

"James was slowly dying but I couldn't give him the medicine he needed as he couldn't swallow."

On November 5, 2017, James became very unwell and was taken to hospital but released the next day.

At her wit's end, Ray turned to Macmillan nurses, who had supported the family previously, and James was taken to St Andrew's Hospice in Airdrie.

She said: "One of the consultants approached me to say he couldn't believe I had been coping with James on my own as it took four members of staff to move him."

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By this stage, James was too ill to return home and he passed away on Valentine's Day 2018, at the age of 56. 

Ray had turned to other charities for support during her ordeal but felt she did not fit in with James having such a rare illness and being so young.

Looking online, she found TIDE and immediately found peer-to-per support as well as a role in campaigning and advocacy.

After being ignored and sidelined for so long, Ray said it was like "therapy" to be able to speak at events and lobby for the needs of other people like her.

She gave up her job in pharmaceuticals and eventually ended up on the payroll at TIDE in a job she adores.

She said: "Through it all, TIDE stuck by me. I was falling to pieces, I was exhausted, I was dealing with the loss of my husband and the financial fallout of trying to arrange his affairs. 

"If TIDE folds it will be devastating, it will be like another bereavement."

TIDE has now launched and emergency fundraising campaign called What If. 

To support the charity see: tide.uk.net/what-if.