To raise awareness of the Alzheimer’s disease, Dr. Vincent Valinducq, columnist on Télématin and sponsor of the Foundation for Medical Research, testifies today to as many people as possible about his career as a caregiver, started at the age of 25, and the fight he led. for 14 years with his mother, who suffered from early Alzheimer’s at the age of 50. A fight he now wants to continue. At 40, his mission is to help others, his own way of honoring and remembering his mother.
Top Santé: How did Alzheimer’s disease enter your life?
Vincent Valinducq: My mother was affected by atypical Alzheimer’s very young, at the age of 50. At the time, I was about 25. The first symptoms were memory problems: she came to my room several times to ask me what I wanted to eat, she forgot to put the detergent before starting a machine… His GP first thought of problems with attention, concentration and even problems linked to the menopause. Then over the years, the symptoms evolved and became more and more pronounced, with a loss of autonomy, walking or speech disorders. After a long diagnostic wandering, what we feared finally fell.
From the beginning with my father and my brother we made the choice that there would be no institutionalization. My father refused any outside help because he considered it his mission to have to help his wife, change her protections, feed her himself, and this until the end.
When did you have the click to get help? What has changed for you?
The first years were very laborious, with my brother, we were in a state of hypervigilance and permanent anxiety, day and night: we never went far on vacation, kept our phone always on and nearby. You put your personal life on hold and you can quickly feel alone. Then one day, my father accepted the fact that my mother would probably prefer that someone outside take care of her, to maintain a certain dignity.
This is where Sandrine, a life assistant, came into our lives. She was our own Mary Poppins, she gave us oxygen and brought energy and life back to our home. At the beginning, she came in the morning, at noon and in the evening for meals, washing… Then gradually, the number of hours increased. She allowed us to offload all the difficult tasks so that we only had the moments of pleasure.
Then, little by little, we brought in nurses, physiotherapists, speech therapists. Our house turned into a mini-hospital, but at least our mother was at home. Changing location, structure can quickly disturb an Alzheimer patient.
What do you think of support for Alzheimer’s patients today in France?
Once, we had to ask ourselves the question of placing my mother in a medical reception structure. Nevertheless, we did not have the impression that these structures were suitable for all cases: it was complicated for us to put our mother in her fifties with patients aged 80-90, in structures too often in lack of time, resources and staff.
I am for home care in the best conditions when possible. There are knowledgeable and trained people to help. Aging well at home needs to be developed and the status of caregiver, which is more than essential in our aging society, needs to be better known and recognized.
What aids exist today?
Even if they are very little known, there are financial and material aids, in addition to the human aids that are life auxiliaries. There is nevertheless a real lack of centralization around these aids, we learn by walking and we sometimes have the impression of knowing more than certain structures. For financial aid, it is possible to set up a MDPH folder (departmental center for people with disabilities) or inquire with the CLICK (local gerontological information and coordination centre). Even today, I am discovering new aid, in particular that of Agirc Arrco, a supplementary pension from which many employees can benefit.
Associations like France Alzheimer or theFrench Association of Caregivers are also a pool of information. They allow exchanges of words and listening, give tips… Finally, it is important not to forget the legal aspect, which can bring a certain protection, in particular with the system of guardianship or family authorization, if it it is necessary to make decisions on behalf of the sick person who is then no longer able to do so.
Read also: Alzheimer’s disease: how to support caregivers of patients?
What advice can you give to caregivers?
Initially, the doctor is a pillar, it is to him that we must turn to speak for the help that exists, whether it is human, material or financial. If seeing the GP for the sick person is necessary, he is also seeing him for you. Caregivers tend to put their health aside, but thinking about yourself can help better. Make sure you are well monitored and monitor your diet and physical activity
Do not hesitate to go see a psychologist, in order to benefit from a psychological follow-up or to discuss with the associations. It is important to talk about it to express your feelings, your anxieties and your pain, and above all to see that you are not alone. Take training to learn how to communicate with a sick loved one or for transfers from chair to bed or from sofa to armchair.
I won’t be the same today without going through all that, I grew up much faster than expected and at some point even became my parent’s parent. But I have absolutely no regrets: even if it’s hard to keep your promises and staying at home requires many sacrifices, the few minutes of smiling with my mother made me forget all the hassles of everyday life.
Among the first charitable funders of French biomedical research on Alzheimer’s disease, the Foundation for Medical Research has made this fight an absolute priority by investing 9 million euros over the past 5 years in 33 ambitious research projects. Alzheimer’s disease affects 900,000 people in France. A call for donations is launched to roll back the disease alongside researchers and personalities : https://www.frm.org/alzheimer
