The “helpers” …
The “helpers”… In fact, a large family bringing together women and men who regularly come to the aid of a loved one. Often a relative, more occasionally a neighbor or a friend. Some examples : you support your mother who has difficulty moving around, you raise your child with Down’s syndrome, you support your wife who has developed Alzheimer’s disease … This role can monopolize you every day or two days a week depending on the level dependency of your loved one. Today, it is estimated that there are between 3.5 and 4 million caregivers in France, the majority of whom are women (almost 60% according to a BVA survey for the Novartis Foundation).
Caregivers: an essential role, not always easy to carry
A primordial role, but not recognized, and which can become much more than dedication. “We always give priority to the sick, while the caregiver also needs to be helped,” notes Nathalie Bouche Deneuville, president of France Alzheimer Loire. Thus, 39% of caregivers perceive this support as a very heavy weight, revealed a recent survey carried out for the insurance company Macif. And almost as many (37%) say they have already cracked.
“Even if, for a person, it goes without saying to help a loved one, neighbors, friends and doctors must nevertheless make sure that they are well, calls out Florence Leduc, president of the French Association of Helpers. don’t have to watch someone die there without moving a finger! “
“It’s urgent”, say the caregivers, who are calling for concrete measures. At the end of 2010, during the first aid / aid general assembly, they drew up a list of fifteen proposals. The priorities ? Compensation for financial loss, adjustment of working time if necessary and the creation of a single information platform. But also respite solutions to be able to breathe one day a week or during the summer holidays …
Annick supports her son suffering from mental disorders
We are indirect victims of my son’s illness
As a child, our son was an extremely curious and gifted child at school. But, around 7 years old, he lost this desire that we knew him to be. In college, his teachers reported excessive slowness in all his gestures, as if he was putting a distance from reality. He later started smoking hashish, which triggered schizophrenic disorder. And he got violent. Every night he pushed us against the walls. We then went to family therapy because, from the outside, we thought it was in the family that things were wrong. My son managed to make sure no one saw him sick. But one day he said to me: “Mum, I can’t take it anymore, I can’t control anything in my head anymore.” He then spent two months in a center for adolescents, but it did not go well. Without a solution, we had him hospitalized. After four months, he came out with no alternative. The seizures resumed despite the treatments. Back to the hospital and that’s where the diagnosis fell. The obstacle course has begun. He went through a clinic, an Esat *, a day hospital, a vocational rehabilitation center …
What will happen when we are no longer there?
Today, he follows a training “green spaces”, and I hope that he found his way. But the battle remains constant to succeed in integrating it into society, including with disability professionals. The fact that we are not heard by them is sometimes more serious than the disease itself. However, families have intimate knowledge of their child’s disorders, they can help doctors without taking their place. Caregivers need relief: if they falter, they will no longer be useful at all. We are indirect victims of the disease. It should be known, for lack of structures, many patients stay to live with their parents …
Nathalie, help her mother with Alzheimer’s
As a caregiver, we always say to ourselves that we should do more …
For about eight years, I have been accompanying my mother. Alzheimer’s disease was diagnosed in 2006, but I think she had it for two years already. She forgot things but above all, she tended to cut herself off from the world. We always wonder, at the beginning, if we do not have ideas, especially as 80% of patients are in denial: “I stop traveling because we always do the same things”, me my mom was saying. For my part, I did not want to interfere in his life. In 2004, she wanted to leave the North to join us in Saint Etienne. We then realized that something was wrong, because she was not able to organize this move herself. For three years, she lived alone in an apartment pretty much properly. But the past six months the situation has started to be problematic. She was spending a lot of money in cash but we didn’t know what. We set up an apartment downstairs and we brought in a nurse and a carer, so that she did not stay more than two hours alone.
We had no more moments of respite for us
I spent an hour at her place every night before going to bed. At that time, we found a certain intimacy without thinking about care, about the problem of incontinence. She also spent Sunday with us. What is difficult is not to have moments of respite to go from time to time on weekends or on vacation. Because the caregiver must rest in order to help better afterwards. In December 2010, under pressure from professionals, she entered a retirement home. However, we would have liked to keep her with us a little longer. Now we have shifted our burden to the nursing home, but it feels like we have abandoned it.
Find out more
French Association of Caregivers
It has set up a network of meeting places in Paris and in the provinces, the Cafés des aidants. You can participate in debates led by a psychologist or a social worker.
3, rue de La Faisanderie,
75116 Paris.
www.aidants.fr
National Union of Friends and Families of Psychic Patients (Unafam)
Bringing together 15,000 families, it informs families and offers guidance to places of care.
12, villa Compoint,
75017 Paris.
Phone. : 01 53 06 30 43.
The addresses of the departmental sections on www.unafam.org
Association France Alzheimer and related diseases
It supports families, contributes to research, but also offers training for family caregivers accompanying a loved one with Alzheimer’s disease.
21, boulevard Montmartre,
75002 Paris.
Phone. : 0 811 112 112.
Departmental associations on www.francealzheimer.org