We don’t need Grandpa Prisons, we need a dementia strategy

TheGlobeandMail.com – Life/Health & Fitness
Published Wednesday, Oct. 13, 2010.  Andre Picard

Like many who care for loved ones with Alzheimer’s disease, Rose McLeod uses visual clues to trigger memories. On this particular morning, she took out a wedding photo and marriage certificate to remind her husband of 48 years that they were indeed married.

Joe McLeod responded angrily to the woman before him, convinced she was a stranger who had come into his home to do harm. Confused, he pushed her away brusquely. Rose fell to the ground; the framed wedding photo shattered, and the glass cut her badly.

To this point, it is an all-too-common story, one that illustrates the challenges of caring for someone with dementia.

A wedding photo, bloodied and in tatters, is poignantly symbolic.

It is painful enough when someone you have loved for half a century no longer recognizes you. The paranoia and anger that are common in Alzheimer’s sufferers make the pain more acute.

But Rose also suffered physical injury that day – Sept. 2 this year. She needed eight stitches to close the wound from the fall.

In the emergency room, Rose McLeod recounted her ordeal with a mixture of sadness and exasperation.

Police were called. Rose didn’t want to press charges. Told it was the only way her husband could get help, she agreed, reluctantly.

Joe McLeod, Alzheimer’s patient, suddenly became Joe McLeod, wife beater.

And this is where the story truly turns Kafkaesque.

Joe McLeod didn’t get help. He spent more than a month in jail (the medical unit of the Winnipeg Remand Centre, to be more precise). He suffered a lot, scared and confused. That’s because his wife, the person who cared for him around the clock, was forbidden from seeing him because she was considered a victim of domestic violence.

On Oct. 09, Joe was granted bail and a bed was finally found for him in a long-term-care facility.

He would have spent even longer had his case not become a media cause célèbre. He still has to return to court on Nov. 08 to face a charge of assault causing bodily harm.

This is a travesty of justice.

It is also a graphic illustration of how the health system – and society more generally – is pathetically unprepared for the challenges posed by dementia, and psychiatric illnesses more generally.

If the story of Joe McLeod sounds eerily familiar, it’s because we have heard it so many times before. The loved ones of patients with psychiatric illnesses such as schizophrenia and bipolar disorder have lived these horrors – and these lies – for many years.

When a sick person urinates in public, shoplifts, trashes the family home or hits someone during a psychotic outburst, the police always say the same thing: Press charges and they will get help.

But the help too rarely comes. That’s why our prisons are full of people with mental illness. (One in eight federal prisoners has a diagnosable mental illness, and the rate is significantly higher in provincial jails.)

All we need now is to start dispatching elderly Alzheimer’s patients to jail for their transgressions.

Let’s state it plainly so that politicians, judges, physicians and others in positions of responsibility understand: It is unacceptable to jail someone with Alzheimer’s.

Psychosis is a common symptom of Alzheimer’s and other forms of dementia. It needs to be treated, not punished.

Jail is not – and will never be – a substitute for care, and care should never be dependent on criminal charges. Our health system and our justice system need to be more humane and rational than that.

We don’t need Grandpa Prisons. We need a dementia strategy.

Health authorities’ lack of planning and failure to take this issue seriously are the real reasons Rose McLeod ended up in the emergency room with serious injuries.

She had been caring for her husband for more than two years as his mental and physical condition deteriorated steadily. (Joe McLeod also has serious heart disease.) Lately, he’d begun to wander and required around-the-clock care.

Rose McLeod didn’t get the training and education that would have helped her prepare for the inevitable outbursts of violence. Her attempts to find a long-term-care home for her husband were unsuccessful. She didn’t get home care to help her cope with escalating demands. There was no one there to help the family navigate the complex health, legal and social welfare systems.

The painful shove from her husband was the least of the assaults Rose McLeod has had to endure.

That the same system that failed to help her was all too willing to incarcerate a sick man for being sick added insult to injury.

There are about two million informal caregivers in Canada – people caring for their loved ones with dementia and other debilitating illnesses. It is in the interest of these patients, and of society more generally, that they live at home as long as possible.

For this to happen, caregivers need help – from home-care workers, system navigators, and public-policy changes such as changes to Employment Insurance rules.

They also need the assurance that, when the time is right, a bed will be available in a long-term-care facility.

When he appeared in court last week – via video hook-up – Joe McLeod was asked by Judge Sandra Chapman if he would comply with his bail conditions.

“I will do my best,” he said.

If only the legal and health systems would vow to do the same for Joe McLeod and the half million other Canadians who suffer from dementia.

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