Opinion — 20 October 2014

THIS article does not pretend to have the answers to dementia but is intended to highlight the fact that Alzheimer’s and vascular dementia are among the most common forms of disease now besetting society. And it is my personal account, as someone recently diagnosed with this disease.

Dementia has killed vast numbers throughout the world in relatively recent times. The symptoms are evident by memory loss, an inability to carry out physical tasks and a slowing of mental activity.

What is not understood is that most dementia sufferers could live a productive life if governments provided the resources to combat and cure the disease.

I know the reaction to that: “There’s no cure for dementia, so don’t waste our time.”

But anyone who has studied the history of illnesses and disease knows this to be incorrect. Thank God doctors and scientists ignored this kind of thinking..

They almost managed to wipe out smallpox, diphtheria, scarlet fever, polio and a swag of other diseases that killed millions.

I hope I’m around when someone screams: “Eureka, we’ve found the cure for dementia.” But perhaps that’s unlikely.

At the last count, about 330,000 Australians had dementia, but it could be many more as so many have symptoms that go unnoticed.

Take a look at the figures to see the longevity revolution that occurred in the past two centuries.

In 1900, the average male in an affluent society could expect to live to 49 and the average female 54. Those figures had a dramatic turnaround in the 20th century. They rose to 79.9 years for men and 84.3 years for women. In other words, thanks to our doctors and scientists, the average lifespan was extended by 30 years.

The experts in this field are now predicting lifespans of 120 to 150 years. I kid you not. The latest figures show that the average male and female have had their life extended by two years in the past 10, according to the Australian Bureau of Statistics. Unbelievable.

Our definition of aged is being written, and rewritten.

How has the public reacted? Find out by asking your friends how they feel about living to 150. They are horrified. “I don’t want to be sitting around eating mashed vegetables when I’m 100,” comes the reply.

The follow-up question is predictable: “And who is going to pay the bill?” Joe Hockey would be proud of them. I have no intention of trying to tell our experts in the mental health field what should be done. What I will do is describe, as best I can, my own experiences and let readers be the judge.

I had a couple of falls in the past two years and landed on my head. Ironically, the first fall was in Parliament House and can be blamed on the parquetry floor, which should never have been used as a floor covering on which millions would walk. Then, after a period without any problems, I fell three or four times in the space of a few months. Not surprisingly, I finished up in Queanbeyan Hospital and then in an aged-care unit.

How did I feel? Shithouse is the honest answer because much of it could have been avoided by taking a little more care.

I was depressed and anything and everything upset me, causing me to burst into tears. The only thing that lifted my spirits and stopped me crying was regularly seeing my wife, Rae, my three sons, grandchildren and daughter-in-law. And our three dogs, Jamie, Bibi and Ginger.

The nursing home was unable to go close to fulfilling my needs. How could it? I missed all of my family desperately. I only had to think about them to start crying.

Below are the random thoughts of a new arrival at an aged-care ­facility.

They are not necessarily the views of the other 27 residents, but are the views of someone who has spent a lifetime at odds with public servants who have never had to suffer the problems listed below.

• Why doesn’t each patient have their own private phone, just as they do in private and public hospitals? Now, if you are lucky, it takes hours to get a call using the ward phone.

• A genius decided to place the emergency/nurse call buttons in a position only a contortionist could reach, so that if you want to get ­assistance you have to hop out of bed — easy if you don’t have a bad back, neck or hip, like I do — and risk breaking a leg or an arm. And most other patients are in their 80s. You need a panel the average aged person can reach.

• Stop serving food no one eats: cold toast, cold tea and thick, glutinous porridge. Offer them choices as they do in public or private hospitals. An edible diet is essential to maintain one’s health and sanity.

• The beds are too narrow and some can cause you to fall out of them. My doctor insists it is dangerous if I hit my head again. Some beds have to be made up to doctor’s instructions, without consideration of patient comfort, to prevent accidents.

• Give the “singers” (screamers) a soundproof room, or at least shut the doors to their rooms.

• Have special brightly coloured controls that don’t blend with all the other black controls.

• Provide reading lamps so you can read at night.

• Staff should be numbered and named. It’s hard for Australians, aged and perhaps hard of hearing, to differentiate between a dozen different accents — South Sea Islanders, Indians, Arabs, Asians, Europeans. I risk being called a racist, but there’s no other way to make the point. By all means employ foreigners, but make sure they speak with an accent that can be understood. I can’t understand them and they can’t understand me. Our bureaucrats cannot understand that there is a difference, and it will save time, money and hurt feelings.

• You’re charged hotels rates for the above, so give hotel service. This is not an 18th-century workhouse. The disparity and inequities between monetary rates charged for residents is nothing short of scandalous. I am charged $600 a week and have provided a $250,000 bond, while in neighbouring rooms residents who may have alcoholic dementia or have gambled their lives away receive the same care as I do, courtesy of Centrelink. Effectively I, and those like me, am subsidising the care of other residents and the profits for the aged-care facility.

The message is, forget about providing for your retirement and aged home care — the government will pay.

In fairness I should point out that the aged-care units are seriously understaffed. How they are expected to wash and clean patients every day, then make the beds, clean the floors and feed us all I don’t know. Those are their basic chores. The rest of the time they must look after the needs of those they are supposed to care for.

“Want to go to the toilet? No worries!” “Want a drink? I’ll be back in a minute.” For one of those minutes I waited 1½ hours.

In the very near future the number of patients will double, and then treble — one carer looking after seven patients with a variety of needs. Do me a favour!

The time has come for governments to take the aged seriously.

When my family wasn’t there I cried for them to call. The only break from this misery were calls from former colleagues and friends. I have already lost several friends to dementia, including former West Australian senator John Wheeldon, Clyde Holding and Neville Wran (among the more brilliant). Then there is the man I admired most, Gough Whitlam, who is fading, although he still goes to his office two days a week — at 98.

When visitors don’t phone or call in I spend the whole day staring at the ceiling. You can watch only so much TV without going nuts. It is the only relief from boredom and it makes me even more depressed. Entertainment in this facility includes things like bingo (oh, goodie!), book readings, piano or saxophone recitals, finger painting (I jest) or whatever.

So far I haven’t been tempted to become involved in these enticing activities. Boredom is the most frightening aspect of dementia.

Every day is hell. And hell it’s going to be for a lot of others as they enter these facilities, and probably worse when the baby boomers come of age.

If nothing is done to improve the quality of life of residents and the standard of care they receive, stories of misery will be repeated ad nauseam.

You can call my writing on the subject a question of self-interest and you would be right. The main reason is that I have only one life and I’d like to have it for a little longer.

My arrival at the aged-care unit has been a shock. The quality of staff varies from good to bloody awful and the unit is supposed to be the best.

Two years ago I attended Medicines Australia’s national conference in Sydney, Living to 150: Do We Want It?

Those present I spoke to were very enthusiastic about the prospect. A young American professor, an expert on ageing, was excited at the prospect of extending life to 150 and beyond. Appearing on an ABC current affairs program he told the audience, holding his fingers narrowly apart, “We are this far from discovering the secret of ageing.” You don’t have to spell out the implications of that.

Billions have been spent worldwide on trying to solve the problems of dementia, and considerable progress has been made, but we still have a long way to go. While we are waiting for the scientists and doctors to make the big breakthrough we can certainly find a way to make the incarceration of sufferers a great deal more pleasant.

We should provide more resources to let nursing homes find a way for family members to spend more intimate time with those they have loved and cared for decades. Watching television and staring at the ceiling is not the answer. We should also provide more carers to come out to homes to look after more sufferers, and now. That’s when they need the most care.

Communication is the area where huge advances can be made. Remember, there is nothing more uplifting than a warm and friendly phone call from a friend and relative or a kiss and a cuddle.

Let me conclude on a happier note. When word got out that I had joined the list of dementia sufferers one of the first calls I had was from an old “friend”.

“A Mr Howard calling,” was the message from the nurse. “I don’t know a Mr Howard, unless it’s the former prime minister.”

“That’s the one,” said the nurse.

I was deeply moved that a lifelong opponent had taken the trouble to ring to find out how I was and whether he could do anything to help. After a lengthy conversation, I told him, “This is what makes Australia a great country.”

His last question was, “What’s it like in there?”

He roared when I shouted back, “Question time.”

Story written by Barry Cohen with the assistance of Adam Cohen.

This article first appeared on ‘The Australian’ on 18 October 2014.

Photo courtesy of News Corp Australia.

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