Power of attorney isn’t something that should only be considered when a person looks on the brink of losing capacity. Quite the opposite, experts are increasingly recommending that all adults, whatever our age, should be looking to draw one up.

Given more and more of us are living longer and dementia diagnoses are rising, more will be needing it to enable other people to take over our affairs when we lose capacity. But not everyone has a smooth ride with power of attorney. Sometimes they can become the focus of huge and bitter family battles. Sometimes the powers are misunderstood. Sometimes it’s just tricky to work out how to navigate the bureaucracy around it.

As part of the Herald and Herald on Sunday’s series on Power of Attorney, we tell two stories – one of a family ripped apart through power of attorney, another of three people doing their best to navigate making the powers work for them.

“It’s like parenting your parents”: Donna and Agnes’s story

If there’s a stereotype of what a person with dementia is like, Agnes Houston doesn’t conform. This charismatic 70-year-old barely pauses in conversation or hesitates over a name. But, as she points out, dementia often doesn’t conform to that stereotype. Agnes was diagnosed as having early onset Alzheimer’s thirteen years ago. Look around her Coatbridge home and it’s possible to see the evidence of her struggle with her symptoms. In her bathroom, by the shower cubicle, is a checklist of the routine to follow while in there, from putting on the shower to rinsing conditioner off. A piece of paper by the window reminds her it is Wednesday. A screen on the kitchen table connects her up each morning to a remote care system.

The signs are there too in the power of attorney document that sits on that table. They are there in the fact that she takes a phone-call from her daughter, Donna Houston, who is not only power of attorney for her mother, but also for her father. Donna is a long-distance carer and she does most of her daily checking in with her parents over the phone.

The signs are even there in the fact that Agnes is living apart from her husband. The struggle with dementia symptoms has meant that Agnes and Alan now live in separate homes, though they see each other every other day.

This is a family that has lived with dementia in multiple ways and can tell a story of what it is to navigate setting up power of attorney. Since Agnes was first diagnosed she has fought enough battles around dementia awareness to have been awarded an MBE for her services. One of her big campaigns has been to highlight the fact that dementia symptoms are wide ranging and include sensory symptoms. Now,she says, she’s going to set in motion a campaign to make the systems around power of attorney clearer, to form clarity out of the muddle that navigating power of attorney can be.

Her daughter, Donna, was suddenly catapulted into the role of welfare and financial attorney back in 2008, when a financial crisis revealed to her family that not only was her father, Alan, not coping with money, but he had dementia like his wife, who had been diagnosed two years previously

Agnes, a former army nurse, was working in a chiropractic clinic when her symptoms first began to impinge on her life. She had done the job long enough for much of it to be automatic, but she found she was forgetting things and her boss told her to see a doctor. A barrage of tests followed all of which culminated in her being told by the consultant that she had Alzheimer’s. At that time her daughter, Donna, was told that people with dementia tend to last ten years and that they estimated Agnes had already had five of those.

It was in the period following this that things became difficult between Agnes and Alan. “Due to the sensory challenges with my dementia,” Agnes recalls, “it became impossible for us to stay together.” Noise triggered her symptoms and her husband liked the radio on. What they didn’t realise, however,was that Alan already had early symptoms of dementia too.

Alan moved out into a separate council flat and it was at this point that his own cognitive problems became dramatically clear. Donna, their daughter, became aware that he had rapidly got into huge financial trouble. “What I didn’t realise is he went from the navy to living with my mum and he’d never really handled money,” she says. “He was just emptying his bank account. I also believe my dad was being financially abused by strangers. He ended up in huge debt, getting electric cut off, getting evicted.”

She also shocked by the way he was thinking. When she questioned him over what he was going to do when his electricity was cut off, he said, “I will burn the furniture in the middle of the living room.”

“At this point I was tearing my hair out. I thought my mum has been diagnosed with dementia, what’s the likelihood?” Alan was then diagnosed by a clinical psychologist as having dementia. “We got PoA as an emergency,” recalls Donna. “What people don’t sometimes realise is that the inability to handle money can actually be one of the first symptoms of dementia and my dad got into a terrible financial tangle.”

Mostly what she has done as power of attorney is to set up systems that mean that her father’s bills are paid and he only has access to so much money a day. It’s a role she has dipped in and out of where necessary. “Yes, you can get power of attorney and take over, but it can be a gradual process and that’s what people don’t understand.”

On one occasion she had to use her powers as attorney to get her father his hip replacement – the consent form was signed by her father, but countersigned by her. One of the problems, she observes, is that once people realised that a relative has power-of-attorney, they start to ignore the person with dementia, even though they may have capacity for many things. “Once you say to someone, I’ve got power of attorney, what’s happened in the past is they’ve turned to me and totally ignored my dad.”

The path to her father’s power of attorney document was a very different one to the journey taken to getting one drawn up for her mum. That wasn’t drawn up until 2012. Agnes recalls that one of the reasons it took so long was because she was managing fine. “This is a scary document. It’s very legal language. But also the concept is scary… that someone will make decisions for you, that you will lose your freedom.”

Donna describes her journey as “kind of like parenting your parents”. “One of the reasons I didn’t have children – though also I wasn’t bursting ot have kids – was that I was thinking this is a huge responsibility. Having a parent with dementia is a lot of work.”

That’s the case, even given that Donna’s parents are actually both managing really quite well. “My mum and dad still have elements of capacity and that’s where the complication is. Although I’ve got power of attorney for my mum for financial and health, I don’t bring out the big guns until necessary and it hasn’t really been necessary for my mum. It was for my dad.”

Among the challenges that Donna has to deal with in caring for her parents is that have an appetite for adventure. For instance, when she asked them what they wanted to do for their wedding anniversary, they suggested a trip to Vietnam and Hong Kong – though Donna persuaded them to go to Disney, Florida instead. She says, “Much to my horror they keep wanting to go to weird and wonderful places even though I know that the last time they were in an airport it wasn’t comfortable for them. I found my dad’s bucket list. It included driving a motorcycle round Russia.”

As well as a power of attorney document, Agnes also has an advance statement, which outlines her wishes and preferences around her future care. “Having an advance statement,” she says, “alongside the power of attorney does make me feel like I have a safety net. I have done everything in my power to get my wishes met. The power of attorney is about living the way you want to live, but dying the way you want to die is another matter.”

Donna’s understanding of Agnes’s wishes isn’t something that has come without work – it has involved many deep and difficult conversations, and it is always a work in progress. “Donna will bring the conversation up in a gentle kind of way,” says Agnes. “We have good conversations with good understanding. Donna is always asking, ‘What are your wishes?’ She says it’s not about her. She doesn’t need to agree She’s only making sure our wishes are being carried out “