The role of the caregiver is essential for sick people who are losing their autonomy. The lives of caregivers are completely turned upside down when they take on this role.
Hélène Pinel, co-founder of the patient association “All in the saddle against ALS” (TECS), but also caregiver of a person with ALS, her husband, who died in 2020, tells us what she experienced and n doesn’t hesitate to share his projects and advice with us.
Why Doctor : What was that like for you and when did you feel like you were going to become a caregiver?
Hélène Pinel : It’s very gradual. The first symptoms appear and the diagnosis is long, taking on average one year. And when the ax and the diagnosis fall, we understand what will happen. I didn’t feel like I was helping right away, but only when it had an impact on my professional life, that is to say when I was limited in my travels.
“My employer allowed me to stay at home in the morning”
And what has changed for you, professionally? Did you have to stop working?
This is often the case for caregivers. I was extraordinarily lucky to have a very understanding employer and manager. It was during the Covid period. I work in an IT (Information Technology) company and we already had all the tools to telework. My employer allowed me to stay at home in the morning. I only came (to La Défense in Paris, Editor’s note) in the afternoon. And when my husband was no longer independent, an assistant came to the house. But he left before it got complicated…
This arrangement of working time was essential thanks to an understanding employer.
What was your role as a caregiver?
I was my husband’s arms and legs. Everything he could no longer do, he asked me to do. So it’s the toilet in the morning, etc. And then, I was deputized, because at one point, it had become too heavy. In fact, washing takes an hour and a half, especially for an inexperienced person. So it’s the toilet, the meal. Meals, the longer they go, the longer they take, and the longer they take, the more they wear down their patience, and you have to have infinite, unconditional love to manage all that.
The caregivers, at the beginning, are the family. Afterwards, we find out, because we are in need, about the administrative possibilities. There are already care assistants. And there, there is a little injustice between patients before 60 and after 60, since the aid is not the same.
There is also the entire medical profession such as nurses, physiotherapists, neurologists… The major player still remains the attending physician who is close to you.
“Helps from family and friends but also from the community”
What assistance have you received and how can you access it?
We had help from both family and friends, and also from the community. You must submit a file to the MDPH (Departmental House for Disabled Persons) which will grant you hours (of assistance, Editor’s note). This is how we pay the helper who comes to the house. And when the disease progresses, we ask for more and more hours.
Everything related to the disease is taken care of. For the material, it’s more complex, you have to anticipate. For example, for the chair, we initially ordered a manual one which was taken care of, and ultimately, the electric chair became necessary very quickly. And there, we were helped by the ARSLA (Association for Research on Amyotrophic Lateral Sclerosis and other motor neuron diseases) with an unconditional loan of equipment.
And there are local associations, like “SLA Qu’es AQUO”, for example, which help patients in the Toulouse region tremendously. But there are many others.
Why are there so many associations? This is because everyone creates an association around the patient to help.
What are the deadlines for obtaining all this aid?
These are administrative procedures. Some people know how to do them well. And, there are those who are a little lost, so it takes time. Myself, it took, I think, 4 to 6 months. It was in 2018. I even went there (to the MDPH, Editor’s note) to explain to them that it was becoming urgent. And despite that, it was long.
What do associations really bring?
ARSLA aims to raise funds to help with research. Their scientific committee is made up of the same neurologists as those who treat in the different ALS centers.
In 2018, I met Virginie Delmas, a caregiver, whose husband was allergic to gluten and who asked herself a question: “couldn’t all of this be linked?” “. So she searched medical publications. And today, our association wants to request compassionate access (permission to access a medication) for a transfer of fecal microbiota. That is to say, we remove all the microbiota from the intestines, and we put back another one from a healthy donor. The goal is to recolonize the intestine of patients.
Many professionals surround the sick person
Who are the health professionals who support ALS patients and their caregivers?
There is the attending physician, the neurologist, the physiotherapist. Physiotherapy is important because people are immobile. So, if the physiotherapist is not there to stretch the limbs, maintain their flexibility, there is neurological pain in certain people.
We also used hospice care to try to improve my husband’s quality of life.
What are the means of communication for people with ALS?
In 2024, there is a great tool: eye controls. That is to say that thanks to eye movements and blinking, this interface allows you to control your computer. As a result, using a synthetic voice, the patient can communicate.
But these systems are very expensive. You must go through the MDPH to be financed.
What do you do when you are a caregiver not to forget yourself and take care of yourself?
It’s complicated… It’s complicated physically because we’re afraid to leave. We become the reference person. It is therefore important to involve care workers as quickly as possible so that the patient has several contacts. In the event of an incident, if the main contact leaves, the patient feels less lost. So putting all this help in place gradually is an essential condition for the longevity of the patient and the caregiver. Since one in three caregivers dies before the patient… And me, while working, since I had to work on the financial side, I only saw burnout.
We went to the cinema from time to time. Here again, pay attention to disabled access, in these cases, we took the manual wheelchair.
It is important to maintain the family network and friends, because it is an illness that is frightening, which is confusing, because the patient changes and so does his physical appearance. He has stiffness in his face, so the way he smiles is different. We have the impression that he is more absent. As in all neurological diseases, you have to know that the person understands and that they are faced with someone who repeats thinking that they do not integrate, but they integrate very well. So we have to explain.
The social network is important for us and the sick person.
Coordination between actors is important
Tell us a little more about your association?
We therefore request the transplantation of fecal matter, in relation to the microbiota (previously called intestinal flora).
We have sought all means to improve the longevity of our spouses or patients who have joined us, but also of the founders of this patients’ association since there are 3 patients and 2 caregivers.
And we can clearly see that in genetic research, things are moving forward, also on certain avenues. But on the microbiota, nothing.
For the moment, the right to the trial (of microbiota transplantation) has been refused.
And we should be able to find a marker, a sort of identity card for this disease in our intestine which would allow us to diagnose it. At the moment, there is no biomarker.
A laboratory has agreed to work with us and begin a first clinical trial called IASO, which is in the closing phase. It started more than a year ago and recruited 15 patients.
What message do you want to send?
I would like ALS to be an example of collective intelligence. What is important today is to collect data and put our computers to work (web, artificial intelligence). There is a need for coordination between medical actors on a daily basis, also regarding administrative procedures and the financial aspect.
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