Exhausted by the interminable wait for a reduction in restrictions, some families are now making the decision to take their loved one out of the retirement home. Testimonials.

Three months ago, Céline took her mother home after two years spent in nursing home.  “The repeated confinements, the sterile visiting rooms, deprivation of rights and liberty largely motivated this decision. But it is also linked to the lack of dialogue and support projects, to the refusal to respect the residence contract and my mother’s rights, to my exhaustion at not being able to make myself heard, ” explains the youngish.v36-year-old woman, resident of the Var.

It has now been a year since the 600,000 residents of nursing homes were subjected [by the Macron government]  to stricter health standards than the rest of the population without the ethical aspects being weighed in the balance in the face of the safety imperative.

Extend life, yes, but at what cost? In a  column in Le Figaro , published on February 6, caregivers denounce “a principle of precaution taken to the extreme”. Confined before the others from March 9, on, deconfined later but  not completely , residents are still banned from leaving or confined to their rooms, depending on the establishment.

“I prepared myself psychologically”

Pierre has therefore just returned to his role of family caregiver, already assumed for 8 years, before his mother’s placement in nursing homes. Since March 2020, he has been calling morning and evening to support the morale of 91-year-old Janine.

Over the months, this daily telephone coaching compensated less and less for the emotional deprivation. On February 27, Pierre came to pick up his mother to bring her home for good. A great moment of emotion after 5 months of acban on leaving (see the video below).

“I’d rather die now in your arms, son, than live any longer there,”  Janine confirms during the hugs.

“I prepared myself psychologically because I know all the work and the personal sacrifices that this will represent. It is absolutely vital to cultivate a good inner attitude and to be able to count on a good team of interveners. You must also take time to rest and maintain personal activities so as not to exhaust yourself. If I am well, my mother’s morale will be fine too! This support is a daily challenge, which tests our limits, but I thank life for offering us this experience to grow together in solidarity and love. I thank everyone who helps us, especially my family and all the friends who are with us ” .

Janine leaves the retirement home:

“I have a lot more peace of mind”

For Céline, the decision to take Monique, 76 years old back with her, also required an important reflection, a preparatory work upstream for the constitution of a team but also a change of personal residence, to take safety into account. and the ergonomics of the dependent person. This is a journey that cannot be taken by all of the residents’ relatives.

“In October, things were clear to me, I had to do everything to get mom out. But it was not until the end of 2020, on December 18, that I was finally able to pick her up ”.

Céline had identified a slipping syndrome over the phone but, on leaving, she discovered a more serious situation:

“She was malnourished, with large cysts in her kidneys, worsenung renal failure and an intestinal hernia… I regret that, in this Ehpad as in the previous one, the medical follow-up was not up to par, despite a cost of 2700 € [same as US dollars] per month… Today, my mother is doing better. I can finally provide appropriate support. Although the workload and the organization are enormous, and despite a setback that I did not anticipate, I now have a lot more peace of mind and I feel less tired. And my mother was able to avoid a third confinement in the room, again decreed in early 2021 for her old nursing home. “

The world of family caregivers

Pierre works from home and will therefore be able to arrange his working hours according to his mother’s schedule. Céline, for her part, is fortunate to have an employer “very accommodating” with her status as a caregiver, which grants her flexibility in schedules. “I advise all those who try this experience to declare themselves as a“ family helper ”  because this allows them to have the support of certain structures [1] . I also advise them to surround themselves with attentive workers, if possible trained in the caregiver’s health. Do not hesitate to change if it does not suit. The health and well-being of the caregiver are the backbone of the home system. It is necessary to be aware of this if we want to last! “

Ehpad turned into prisons

With hindsight, Céline believes that the health mantra “isolate to protect” endangered the life of her mother:  “Not only did Monique experience two confinements in the room, deleterious for her mental health, but her medical examinations were canceled, like his scanner. 

She also spent 10 months without reading glasses and started getting a cataract.

Impossible for me to intervene, and of course, it was no longer possible for me to bring in the establishment of external accompanists such as an art therapist and sophrologist despite the support contract.

***

As for visits to the visiting room, I avoided them as much as possible because there was a sound system to amplify the conversation and share it with the whole establishment… How could my mother tell me about any problems? Where is her privacy? “

parlor.jpg

In the visiting room of this Ehpad in the Var, the visitor is in the box. A microphone connected to a sound system makes it possible to hear each other, but without confidentiality of the exchanges. For Céline, the time has come for relief:  “I no longer have to manage my mother’s health from a distance nor to deal with an institution that is becoming ill-treating, within the meaning of the Council of Europe definition of 1987  [ 2]. This abuse affects staff, residents and their families alike. One example among others, I discovered that my mother had been vaccinated against the flu without our consent, simply because the coordinating doctor had decided, without even telling the attending physician. My protest by mail received no response ”.

Powerless, morally worn-out families

Unlike Céline, Françoise cannot take her husband out of the nursing home. Her status as a caregiver would also not be officially recognized, because she is Jacques’ spouse.

“It was reluctantly that I placed my husband, aged 85, in a nursing home. He entered it just before the health [Corona] crisis. But how do you do this when you have reached the end of your strength and you are no longer able to assume more burdens? Today, it’s emotionally very complicated, for him and for me. If I could, I would take it back. Concretely, it would be necessary to find several trusted people to take turns 24 hours a day. It is not easy. In addition, home hospitalization is extremely expensive. We are in full reflection, but currently, we see no alternative to relieve Jacques ”, deplores Françoise, 84 years old.

Like many families, Françoise is faced with the exclusion of caregivers. “It really drains morale. We can see caregivers hugging our loved ones, but for us it is still forbidden for us.

It is heartbreaking. Twice I broke down in the parlor. Is it better that Jacques die of emotional deprivation or of illness? All the nursing home staff tested positive and they all came out okay, and ny husband too. But if he were to die today, in his state of health, I woukd NOtT say that it was  Covid that killed him… ”

An increasingly accounting logic

Françoise did not expect to live in such a situation in her peaceful region of Dordogne. “In my mother-in-law’s nursing home, which numbered 40 people, we had family management. Then one day a change happened. Huge work has been done to increase the capacity to 80 people. The director has been replaced by a woman more focused on administration than on human contact. We really have the impression that old age is becoming a big business 

 Companies listed on the stock exchange invest in retirement homes and coldly apply their imperatives of profitability. Unfortunately, this logic now seems to contaminate public establishments. We no longer really deal with personalized support. The health crisis sheds more light on this drift in the care of our elderly ”.

While at the national level, the unions have been  asking since the summer of 2020 for  the creation of 200,000 additional jobs to allow the nursing homes to properly carry out their mission, our elders have not finished paying the bill for their abandonment by the State. . They must also now undergo a new health discrimination, with outings that the Minister of Health now wishes to make  conditional on vaccination …

A listening line

The Regional Health Agency (ARS) of Occitanie in collaboration with France Assos Santé (the voice of users) offers a support service for listening and ethical dialogue (SAEDE) with a dedicated telephone line (08 01 902 303 ) to respond to difficult situations and blockages between residents or their families and nursing homes. If you have tried this listening service, your feedback is of interest to us, in the comments following this article.
Pryska Ducoeurjoly is a freelance journalist specializing in health.

She confides “ I am also the spouse of Pierre cited in testimony. I had the opportunity to be as close as possible to the situation experienced in nursing homes and I was able to film, with the support of a professional, the exit of my mother-in-law, Janine. The mental burden of having a loved one in nursing home is particularly difficult to deal with in human terms. Even if I am less affected than my partner, the exit of Janine is for me a relief because it allows to take back control of a situation where I felt, like many, helpless ”.