NICKY Miller wanted her mother to die at home because she thought it would be peaceful.

She had fought off pressure to put her mother - a once proud and independent woman who had worked well into her 70s - into a care home, instead moving her husband, two daughters and the family dogs into her mother's home in Musselburgh to ensure that she would be safe and loved as Alzheimer's disease took its toll.

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In the end, the experience of those final weeks before Barbara Harkness passed away, aged 81 in February 2017, has scarred Mrs Miller.

"If the police had ever looked at my Google history they'd have thought I was planning to murder somebody, because of the stuff I was looking up," she says.

"With Alzheimer's disease, patients basically starve to death, which was something I didn't know. And when somebody is losing weight rapidly, not eating, things happen to their body which I didn't understand.

"Then of course the stuff we were supposed to be getting for end of life care like pads never came, so it was a case of using Primark bath mats instead. It was just ridiculous, but we were having to find things in the house to soak stuff up.

"My daughter and I were carrying Mum through to the toilet, and carrying her back, because we hadn't got the commode we'd asked for.

"When they delivered a hospital bed for her, the nurse said she couldn't help get my mum onto it because of 'health and safety', so my husband and I had to do it. I'll never forget moving my very frail Mum like that. It was horrendous.

"A week or two before my Mum died, she was so thin and underweight and I was really struggling. I'd phoned the out-of-hours number in tears because I couldn't get her cleaned, there was stuff all over her and I didn't know what it was, and two district nurses came out. They washed her and got her all sorted out in the bed for me, which I was so grateful for.

"But after that I was left. They would just come in every 24 hours to fill up the morphine, and that was it."

The Herald: Nicky Miller with a photograph of her late mother, BarbaraNicky Miller with a photograph of her late mother, Barbara

Exhausted by the ordeal, Mrs Miller, a legal secretary, was left heartbroken when her mother died while she was sleeping.

"My husband and I hadn't slept for days and my husband said 'come on, let's have a lie down - she's got her morphine, she's settled, let's have a sleep'.

"I woke up two hours later and went through to find that she'd just died. I was devastated."

The experience has led Mrs Miller, 49, to volunteer with charity, Marie Curie, to help raise funds as well as awareness that its palliative care nurses and hospices are not only there to support patients with terminal cancer.

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The charity estimates that one in four people in Scotland - some 11,000 a year - who would benefit from palliative are currently missing out.

While around eight in 10 people with terminal cancer are receiving palliative care, provision is much lower for other conditions such as dementia or organ failure, where on average just six in 10 and four in 10 patients respectively are accessing it.

The Scottish Government is investing £3.4 million towards a target the everyone who needs it should get palliative care by 2021. The move would benefit dying patients and their loved ones, but - according to research by the London School of Economics - it would also save NHS Scotland an estimated £4.2m a year in avoidable hospital admissions and emergency callouts.

Richard Meade, head of policy and public affairs for Marie Curie Scotland, said: "People who are terminally ill, if they can't get the support they need from palliative care, then they are more likely to be rushed to hospital in an ambulance.

"Then they'll be in hospital and they might not be able to get back home again because there's not the support for them there.

"Yet they could be cared for at home if there was, and actually that costs significantly less money. So by significantly investing in palliative care services, you help ease that pressure on acute hospitals and that can help with efficiency savings in the system, which is obviously something that health and social care partnerships are looking at."

Mr Meade acknowledged that the majority of patients in Marie Curie hospices in Glasgow and Edinburgh, as well as those cared for at home by the charity's palliative care nurses, are individuals with cancer.

But they are keen to make the public and professionals aware that they can provide end-of-life expertise for a wide range of terminal conditions, including Alzheimer's.

"The majority of people that we still see are people with terminal cancer but we are working to try to make sure that more people with those different conditions get access to our services," said Mr Meade.

"Part of that is because all of the patients who access our services must be referred by a GP or a district nurse or a hospital consultant.

"So we have to work with those specialists, those GPs and district nurses, to let them know that they can access our services for conditions other than cancer."

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In the years she spent caring for her mother, Mrs Miller said Marie Curie was mentioned only once - by a district nurse who said she would make a referral. But nothing came of it and the charity has no record of ever receiving the request.

Mrs Miller said the support could have made an enormous difference.

She said: "Number one, they could have been there advising me what to do because I didn't know. Secondly, they're a support. And the other thing is that Marie Curie send people out overnight so that you can go to bed and they'll sit with them.

"The problem was it had got to a point near the end where I was so terrified that she was going to die and I so desperately wanted to be with her, so I wouldn't go to my bed.

"Having someone who would have come in and sat with my Mum to allow me to sleep and waken me if anything changed, as opposed to just dozing on a seat at the foot of my Mum's bed, would have been a massive help."

The Herald: Barbara HarknessBarbara Harkness

Barbara Harkness was an intelligent woman, fiercely independent, and "wouldn't be told how to live her life".

A divorcee and mother-of-two, she had worked as a nurse at the Royal Edinburgh psychiatric hospital in the capital's Morningside area before switching later to work on reception. She shunned retirement to continue manning the front desk until she was 75.

Looking back, Mrs Miller believes the signs of her mother's Alzheimer's disease were there towards the end of her career when she started forgetting to pass on phone messages. Eventually she came under pressure to retire.

"She didn't want to give up work, that was the problem," said Mrs Miller. "She wanted to continue. She enjoyed it. She had been 20 years on reception, it was just something that she did.

"Her work was what kept her going. She loved her work, and as soon as she had that taken away from her she just started to downhill very, very quickly."

Over the next couple of years, Mrs Miller noticed disturbing changes in her mother's behaviour as she increasingly cut herself off from her family, turning her daughter away when she tried to visit, never answering the telephone and even refusing to spend Christmas with her family.

Mrs Miller said her mother stopped being able to look after herself or her home, and that she was so unkempt at one point that she was "like a vagrant".

Initially she believed her mother was battling depression as she struggled to come to terms with giving up work, but when a GP asked Mrs Harkness who the Prime Minster was and she had no answer the dementia diagnosis began to crystallise.

"I was shocked," said Mrs Miller. "I just thought she was being difficult. Looking back now I realise that her behaviour was because of the Alzheimer's.

"I think she felt ashamed knowing that she wasn't coping. She had moments of clarity where I think she realised what was happening.

"Afterwards I found a calendar in her house where she'd written 'this is today' next to the date, so she was obviously getting up in the morning and writing 'this is today' to keep in her mind what day it was.

"Her hearing and her sight were going as well, so how she did it I've got no idea. It must have been an absolute nightmare."

Long before she fell ill, Mrs Harkness had told her daughter she never wanted to end up in a home and Mrs Miller promised her that she would not put her in one.

Instead Mrs Harkness left her own family home and moved into her mother's home along with her husband, Paul, an electrician, and their daughters Eilidh and Rachel - then both teenagers - and their two pet dogs.

Mr and Mrs Miller renovated the house themselves to keep costs down, extending and reconfiguring it to be wheelchair accessible as her mother became increasingly frail.

During the day, Mrs Miller looked after her mother on her own before putting her to bed and going to work from 5pm until midnight.

At night the family were often woken by Mrs Harkness as she suffered hallucinations brought on by sedatives.

In October 2016, Mrs Harkness was briefly admitted to a respite care home to give the rest of the family a break.

Tragically, she was sexually assaulted by a male resident, and in the months that followed Mrs Miller said her mother "went downhill".

She gave up work to look after her round-the-clock but feels there is very little medical support for families who do not want to put their loved ones in a home.

"I just didn't leave the house for months," she said. "I was stuck in the house 24/7 with my Mum, having the same conversation over and over, and it's boring. Just to have someone else to chat to would have been quite nice.

"She never wanted me to leave the room. Even just going to the toilet I'd have to shout through to her 'I'm just coming back Mum'.

"I'd be hoping she'd fall asleep so that I could quickly put the washing machine on.

"I wanted my Mum to die at home because I thought it was going to be this lovely, peaceful thing, which it didn't turn out to be - but I think it could have been if Marie Curie had been there.

"I'm fortunate that I had my husband and my two daughters with me, and we coped with it as a family, but if you're on your own caring for someone like that it must be absolutely awful.

"Everybody, no matter what their illness is, should be able to get palliative care."

A Scottish Government spokeswoman said: “Scotland is widely recognised for providing high quality palliative care for those nearing the end of their life, as well as support for those caring for a loved one.

"This recognition is a tribute to the compassion, commitment and dedication of those working across our health and social care services.

“We want to support those working in health and social care to deliver the best possible care for those nearing the end of their lives.

"Our Strategic Framework for Action on Palliative and End of Life Care, which was published in December 2015, set out a vision for the following five years, with clear outcomes and ten commitments to support improvements in the delivery of palliative and end of life care across Scotland."

If you would like to donate to Marie Curie or need support for someone affected by terminal illness, you can contact the Marie Curie Information and Support Line free on 0800 090 2309 or visit mariecurie.org.uk/support