Julia Morrison on what she's learned about the family care system after a decade of her family caring for her mum with dementia

“Families should do more” proclaimed the front pages last week. Edinburgh City Council doesn’t have enough money to look after all our relatives, so we’ll need do more to keep our nearest and dearest.

In March, 267 people were loitering in hospital in Edinburgh, bed blocking. My mum was one of them.

On 13 February, dad came home from walking the dog and found mum, who has advanced dementia, in the bedroom in a pool of blood. She’d fallen and hit her head.

Mum and dad waited two hours on the ambulance, and mum was whisked off to hospital where she remained for the next ten weeks.

After about two weeks, mum was medically fit. The bump to the head hadn’t affected her and, as far as we were concerned, she was ready to return home. But dad was called to a meeting with doctors, social workers, psychiatrists and allied health professionals and it was proclaimed that mum wouldn’t be coming home.

This came as rather a surprise. Before mum went into hospital she’d been surrounded by health professionals and no one had said they could see dad was struggling, that mum would be safer elsewhere and it was time to get a plan in place to move mum into residential care.

Did they not fully appreciate the level of care dad was providing? Or was it cheaper and more convenient for them to turn a blind eye to a 70-year-old man looking after his wife who could no longer speak, had challenging behaviours, limited mobility and was doubly incontinent? I know which of these I believe to be true.

So when Edinburgh Council is talking about families doing more, we’re not the kind of people the council is talking about. We’d done out bit (pat on the head, thanks very much) and now mum became the problem of the state. And what a problem she was! Her advanced state of dementia meant that she couldn’t be admitted to the majority of care homes in Edinburgh, because they’re just not set up to care for people like mum. It took two months to get mum into a suitable residential care setting.

Anyway, Edinburgh Council’s chat about relatives doing more got me thinking again abut my family. Dad had been a full-time carer for mum for nearly a decade. In the past year, as things had deteriorated, I’d worked compressed hours and then latterly reduced hours to help dad with mum’s care. We were a family pulling together and doing what needed to be done to look after one of our own. So far, so model family (according to the Edinburgh Council rating scale of worthy families).

But what if things had been different? Let’s imagine my wonderful and dedicated dad had predeceased mum (sorry dad!) and let’s rewind the tape three years.

Well, apart from dad being dead, there’s good news. I’m a chronic singleton in her early thirties with no partner and no children (win!) mum is only in mid stage dementia (double win!) and my parents are pretty middle class with a paid-off house and a comfortable amount of savings to sustain mum and a spinster carer for several years (triple win!).

So, in this alternative universe, I suspect I’m exactly the kind of person Edinburgh City Council is talking to. “Hey you! Yeah, you! Don’t you love your mum? You should devote the next X years of your life to looking after her.”

Well, there’s no good reason for me to not look after my mum, is there? I’m young, free and single. Only an insufferably selfish hedonist would not want to devote the entirety of their early thirties to looking after their dear old mum with advanced dementia.

But from watching my dad and other carers, I know that caring for someone full time is a draining and isolating experience. Apparently Edinburgh City Council is keen to hear our ideas on what can be done to help families care for their relatives. Well, here is my list of things that I would love to see in place for full time carers:

If you’re really talking about supporting full-time family carers to care well and stay mentally and physically healthy, then it doesn’t come cheap

The ability to work– going to work is an important part of my identity. I don’t want to drop out of the workforce for years and struggle to find work after I stop caring for my mum. I want to keep my skills current, have a break from being a carer and enjoy being with my colleagues. What’s reasonable? Two days per week?

The right skills– have you ever lifted an adult out of bed? Have you wiped their bum? Have you tried to get them dressed? It’s pretty difficult, so I’ll need the specialist kit and training to enable me to do that safely. And as mum’s condition declines I’ll need to learn new new skills.

Seeing my pals– in my early thirties I would go out with friends three or four times a week. I could come rolling in in the wee small hours any time I like. But if I’m caring for mum, what’s reasonable? Do I get to go out with friends twice a week? Better be home before midnight and make sure you’re not too drunk to get up at 3am to change a wet bed. Is 10 hours a week reasonable? Can we push it to 15 hours some weeks?

Counselling– seeing your mum slowly disappear in front of you is a heartbreaking experience. It’s a prolonged bereavement and I’ll experience the sharp pangs of grief for years which won’t mellow because mum’s still here but not here. Coping with her challenging behaviour is wearing on me and my life will have become unrecognisable. Talking to someone about all this is probably a good idea…

Holidays– as a worker, I get 30 days holiday a year. I suspect full time carers looking for equal treatment would be laughed at, in spite of the fact they’re working 24 hours to our 8 hours. How many days holiday should a full time carer be allowed?

There are lots of different things that can make life more bearable for full time carers. This is my personal top five. But I write this knowing that there’s not a cat’s chance in hell that the council will be able to support family carers with these things.

My mum was kicked out of day care for not playing nicely with the other people with dementia, so we need a dedicated carer to look after mum – that’s expensive. The cost of the respite care mum received was over £20 an hour. If it was agreed that I could have cover to work, socialise and look after myself we could be talking around 30 hours cover a week. Thirty hours of freedom comes at a cost of over £600+ a week: it just won’t happen.

If you’re really talking about supporting full-time family carers to care well and stay mentally and physically healthy, then it doesn’t come cheap. It’s worrying that Edinburgh Council sees it as the cheap option. That’s a very clear signal that they simply don’t understand the enormity of caring for someone within the family, and that families are already doing all they can to look after their relatives.

The sad thing is, they’ll still probably get what they want. Yes, I have a list of things that would help me care for mum better, but (annoyingly) I love my mum and of course I’d sacrifice my freedoms and do my best to care for her with or without the right supports in place. And that’s what the council is banking on. Pushing an army of family carers to do more with even less, putting the people we care for at more risk, and putting our own physical and mental health needs last. They don’t care for carers now and they won’t care more for carers in the future.