Dementia carers in France need support
A British woman who cared for her husband suffering from dementia for nearly a decade in France has urged other carers to seek help as early as possible.
The woman, whom we call Susan Brown (she asked for her identity not to be revealed), moved to the Corrèze in 2004 to retire with her husband.
In 2008, she noticed he had problems with co-ordination.
He was 63. Mrs Brown said: “His driving was different. He would make mistakes writing cheques. Then he started losing things like his wallet and it was the frequency of these incidents which gradually led me to join the dots.
“He was in denial. I think he knew something was wrong but couldn’t face finding out.
“By 2010, he was becoming increasingly clumsy, agitated, stubborn and forgetful. I made an appointment with the doctor, specifically for his change in behaviour that year.”
He was diagnosed with dementia.
In France, three million people are directly or indirectly affected by dementia, a cover-all term that describes a group of symptoms linked to a decline in memory or other cognitive skills severe enough to reduce a person’s ability to perform everyday activities.
Over the next nine years, Mrs Brown learned, often the hard way, how to care for someone with the condition while living in a foreign country.
Mr Brown died in February, having spent his final 18 months in hospital in a unit for patients with severe dementia.
“I’d like to pass on things I wish I had known earlier,” said Mrs Brown. “If it helps one person, it will be worthwhile.”
She urged carers to act early: “You will need all the help you can get. It is unavoidable.” She advised partners to seek medical advice as soon as possible if they suspect a problem.
She said: “There are around 20 types of dementia, one of which is Alzheimer’s, and memory loss is not always the first sign. If there is any change in behaviour which becomes a pattern, go to your GP.”
After diagnosis, you can apply for the benefit Apa, allocation personnalisée d’autonomie, which is available to over- 60s who need help with daily tasks. Mrs Brown said: “I was given €600 a month to pay for an Apa-registered home help for four hours a week.”
A nurse will come for medical procedures plus giving showers, as that too can be difficult. A taxi service will take patients to support groups – useful for patient and carer.
When the condition gets more serious, it helps to get a carte de stationnement pour handicapé from the Maison Départementale des Personnes Handicapées, so you can use disabled parking spaces and go to the front of supermarket queues.
Later you may need a place in a care home, either permanently or for respite care.
Even five years ago, homes insisted Mrs Brown had a European carte de séjour de longue durée.
A power of attorney is likely to be necessary and requires a special medical, which took Mrs Brown three months to organise – plus a further six months for all the paperwork.
She advises sorting all the paperwork as soon as possible as it can be “long and difficult”.
She also made funeral arrangements early, knowing it would be hard to face in the six working days allowed between death and burial in France.
A valuable source for practical day-to-day tips was the alzheimers.org.uk forum.
She said support from friends helped but in the end everything is on the carer and the person they used to turn to for advice is no longer able to give it.
Find help and information in English
Help for English-speaking carers of dementia sufferers is available in France.
The main French charity, Association France Alzheimer, is supportive and has Anglophone groups.
One part of Association France Alzheimer Dordogne with an English-language support group has been meeting in Bergerac for the past six years and is developing a network of helpers across the department.
France Alzheimer has recently given them a grant to set up a branch in Eymet.
Chris Grasby, vice-president of Association France Alzheimer Dordogne, said they hope to launch in September.
It is hoped it will have professional support from a psychologist and other therapists, either in music or art.
It will operate one afternoon each month. They are currently looking for volunteers and an English-speaking psychologist.
Mr Grasby said: “We really hope the new group will persuade English-speakers to participate early, to share their problems and for a short while each month lighten the burden of the disease.”
Anyone from across France can telephone the Dordogne group on 05 53 27 30 34 for help and advice.
There is an Orne Alzheimer’s English-speaking group which meets every six weeks at La Ferté-Macé and anyone interested in attending meetings can email Terry Wright at email@example.com
In Paris, a new group for carers launched in April. It meets once a month and is led by an English-speaking clinical psychologist.
Contact Wendy Stern by phone on 06 15 25 18 13 for more information, or email at firstname.lastname@example.org.
Mr Grasby said it is worth getting in touch with your local Association France Alzheimer group, even if it does not have an English-speaking section, as they have wide-ranging support and aim to help.
English translations of some of the useful information are now available and you can ask for them from the Bergerac, Orne and Paris groups.