By Sally Dickinson
Mental illness is a harsh reality for many of us ? most people can think of at least someone they know, a relative or a friend of a friend who has suffered from anything from depression, right down to dementia.
According to the Alzheimer?s Society, dementia alone costs the UK government ?17bn a year, and there a currently 700,000 people with dementia in the UK. It predicts that by 2025, there will be more than a million people suffering from dementia in the UK ? a scary prospect indeed.
Put in prospective, more and more women are choosing to have children later on in life while they pursue their careers. So, for many, by the time they are ready to start a family, there is a big chance that their parents will be much older than was the case for previous generations, meaning that some women will be caring for the young, the old and the sick ? and all at the same time.
When mental illness hits someone near and dear to you, it?s hard to deal with, but what if along with work and looking after a family, you also have to look after your parent, too.
This is the reality for 40-year-old Jane, a married mum-of-two from west London. Jane?s elderly mother, Rosie was diagnosed with Alzheimer?s a few years ago, but her condition has steadily deteriorated over the years. Jane has had no choice but to put her in 24-hour care. She is a hardworking career woman, the family?s breadwinner in fact, so putting Rosie in the hands of professionals seemed the best option. After all, these are people who would have the time and expertise to cater for her mother?s specialist needs.
That was a heart-wrenching decision in itself, but with social care came another hurdle of problems that Jane had to jump over. First it was the sub-standard quality of care that Rosie was receiving. Jane would arrive at the nursing home to find her mother dirty with grime on occasion, as she obviously hadn?t been washed for days. Rosie was also distressed in her countenance?something was obviously wrong.
Naturally, Jane brought this to the attention of the staff, but she was dismissed and told “perhaps you shouldn?t visit her so often”. “I knew my mother needed 24-hour care,” says Jane. “But my wishes were going unanswered, and my voice was not being heard.”
Things got steadily worse, and Rosie would start wondering and putting herself in danger ? once she disappeared from the nursing home for so long that Jane had no choice but to call the police, who conducted a helicopter search of the area until Rosie was found and brought to safety.
One might ask why Jane didn?t take her mother out of the care home, but it?s a catch-22. Yes, it?s a heart-wrenching decision to keep her mother in the nursing home ? finding one that could accommodate her in the first place was another lengthy and complicated process ? but her mother does need 24-hour care, something that Jane and her young family would not be able to cope with. And Jane has to work because the family depends on her salary.
According to Nancy Mace and Peter Rabins, authors of The 36-hour Day, it takes seven people working full-time for one week to care for an Alzheimer?s patient, and for others in a similar condition ? that perhaps makes it clear that managing this condition with a young family in tow makes it a very difficult prospect. And that is why Rosie, and others in her position, needs reliable care.
“The current care system is set up for physical frailty, more-so than mental frailty,” says Jane, looking back at her own experience dealing with the elderly care system. “When you see something is broken, you know how to fix it. But with mental illness comes a fear of the unknown.”
From the start of October this year, the new Mental Health Act made it feasible for social workers for the elderly to make decisions for them, rather than their next of kin. This is obviously a terrifying prospect when things are going wrong with that care. And Jane recommends that people who are unhappy about the care a relative is receiving speak up and challenge the system. “My admiral nurse has just told me that she hadn?t realised how opaque the system is to people like me until I had challenged the structure and held them to account.”
“The real losers in all of this”, says Jane, “is society as a whole. We can measure how civilised a society is by watching how it looks after the weakest members.” She says that it is very important not to give up. “Keep demanding what you want and need until they listen to what you have to say,” she says.
Experts at the Alzheimer?s Society, (www.alzheimers.org.uk), also offer strong and helpful advice for carers in a similar situation to Jane. They also reinforce the importance of looking after yourself as well. “It is easy to ignore your own needs when caring for someone with dementia ? and to forget that you matter, too. It is important to take steps to safeguard your own health and wellbeing.” Make time just for you and do something that you really enjoy. This will keep you strong and focused on your day-to-day life and keep your spirits up.
Carers can also turn to the ?Alzheimer?s talking point?, an online forum for people to share important information and experiences about all forms of dementia.
Rosie is now in 24-hour care in a nursing home for elderly people suffering from mental illness. Jane is still fighting to get her moved into a home that is closer to the family so that Rosie can continue to see her grandchildren ? a simple human right that she feels the care system in place is fighting to keep from them.
She is adamant that she will soldier on and fight her corner, as many other women like her do. Inevitably, these women, the new ?superwomen? of today?s society, will continue to grow into this well-deserved title. They are the natural carers, the earners, the working mothers and society?s soldiers, who dust themselves off and fight for their cause. I certainly admire them.
USEFUL CONTACTS
- The Alzheimer?s Society www.alzheimers.org.uk, or tel: 0207 7306 0606. The national helpline is the National help line on 0845 300 0336.
- Mind?
- Community Care Advice Guide?
- You can also contact your local social services/ local government to find out information for support in your local area