The current image of alcoholism and depression contributes to the stigmatization and isolation of patients and their families"
20 Mar 2019 • 5 comments
Discover the poignant story of Yves, a member of Carenity France. He accompanied his wife Fabienne to the end, fighting against her alcohol addiction and depression. Today, despite the death of his wife, he has chosen to continue his fight to better include relatives in the management of diseases. To read his blog (in French), it's here.
Hello and thank you for agreeing to answer our questions. Can you introduce yourself in a few words?
My name is Yves and my wife's name was Fabienne. I am a 57-year-old man, a happy companion and husband, father of three children. I lived 24 years with my wife whom I met at our workplace, a public hospital. Disabled from birth, I have always been rather shy with girls, so when this very pretty woman became interested in me, "there entered into my heart a part of happiness whose cause I know". She taught me everything about that happiness and much more. We had 3 boys and we shared everything.
Your wife suffered from depression and alcohol dependence. What were the first signs?
I didn't really perceive her unhappiness and depression until her addiction was obvious. I knew later that she had started drinking to calm her fears when our youngest son was sick (cancer) and that it had been interrupted for several years. Occupational difficulties were the trigger for depression and increased alcohol consumption. She always drank in secret strong alcohols that she didn't like. When I became aware of her addiction, she regularly drank large amounts of alcohol and could no longer hide her intoxication. When I asked her to take care of herself, she quickly agreed to talk to our treating doctor about it. Then she accepted to attend rehab in a private clinic.
How did your children and those around you react?
I think we shared the fear of losing her and the great suffering it caused to see her as an addict. It has strengthened our family ties. The three boys were 12, 10 and 7 years old when she became ill. Taking into account their respective ages and their willingness to talk about it or not, I have always told our children about the reality of their mother's illness. Fabienne always took care of us as soon as she got better. For her parents, her illness was incomprehensible. The exchanges between them about her illness were totally impossible and I know that her parents suffered enormously.
Was the decision to stay with your wife an obvious one? Did you have any moments of doubt?
Not for a moment did I think I would voluntarily separate myself from my wife. I hated her illness, denial, lies and my own mistrust. I was especially afraid for her every minute for more than 9 years.
Seeing no way out after several relapses and too many alcoholic drinks that directly endangered her life, I asked her to rent an apartment in order to manage herself and take charge of her life. But for me, it was still a step in her care journey and in no way a definitive separation. Similarly, when she was hospitalized for periods of 3 and 6 months, I considered with her that she could separate from me if she wanted to, so that she could rebuild herself. I would have accepted this separation if it would have allowed her to find her way to recovery. But I know that we, the children and I, had become her only reason to live.
How was it monitored?
At first, a cure was proposed by our doctor in a local private clinic, for withdrawal during 3 weeks and drug treatment at discharge. Following her relapse, I was forced to request her first hospitalization at the EPSM (public mental health establishment) in the sector, against her will, on the advice of the doctor of the private clinic in front of whom she had made suicidal remarks while refusing hospitalization. Many voluntary or involuntary hospitalizations followed, as well as outpatient follow-up periods in the day hospital and aftercare.
Were treatments implemented over time?
Apart from the periods of treatment and aftercare in hospital, the continuity of her care path depended solely on her will and state of health. Even after several attempts on my part to report the worsening of her consumption and the deterioration of her health, I was never informed of the progress of the treatment and the risks involved.
I found out in retrospect that my wife came to the hospital one day with more than 2g of alcohol in her blood. The staff at the facility would let her rest without involving her in the activities and then drop her off in front of our home without informing me of the situation. These facts are recorded in the file. These events occurred after several life-threatening emergencies for my wife, including a proven suicide attempt.
Was she offered psychological support?
She was only followed by psychologists and nurses during the course of treatment and aftercare as well as in outpatient care. She also tried to follow EMDR treatment, which was interrupted by a relapse. My wife made the choice for several months and until her death to attend meetings of the local Alcoholics Anonymous group. Peer helpers are a real support in the care process.
Have you and your sons been offered psychological support?
No, not as part of my wife's care journey, the psychological support was given through mantras and advice such as:
You can't help it.
- You're not your wife's caregiver
- Protect yourself
- Protect your children
- Live normally
- Do not turn your children into emotional weapons
How did you preserve the family unity during your wife's illness?
I never doubted our mutual love for each other and our children knew it too. It is the resilience of our mutual attachments that has allowed us to remain a family. Her willingness to fight as long as she could and to take care of us has allowed us to always make the difference between her illness, her addictive behaviour and the loving woman and mother she has always been.
You explain on your blog that health professionals are not always completely kind and considerate to those that they are treating. Do you feel this was the case for you?
It is not a feeling but a reality that is not individual. The family and friends are kept away from the care paths managed by mental health institutions.
The lack of systemic communication between doctors and spouses is justified by medical confidentiality and the need to protect the relationship that must be established between a doctor and his patient. I have been kept away as much as a toxic environment that hinders the therapeutic process. No diagnosis was communicated to me, neither its treatments, nor the evolution of its disease... No one took into account my reports and my desire to be a caregiver. I managed alone her hospitalizations, the end of her professional life and it was I who forbade her to drive.
How could the integration of family members into the care process be improved?
It is the continuity and safety of care pathways that must be improved first and foremost. The reality of the practices are episodes of discontinuous care without real coordination between the structures (GPs, psychiatrists, addictologists, postcourse centres...). Inform, train, accompany, support the people around them to make them involved in the care process and no longer a spectator. This is essential to really secure and improve the performance of ambulatory care, this care that is immersed in our life course and that is currently developing. This organization has a name: the therapeutic alliance and this alliance must integrate the family to improve care.
In addition, the supply of care in systemic therapy, couple therapy and family therapy remains totally insufficient in France today. However, an increasing number of structures are proving its effectiveness in treating patients and improving the future of families.
What was the hardest part of accompanying your wife in her fight?
At its most intimate, it is to see the woman I loved suffering and fighting this disease without being able to get out. Seeing her get better and then relapsing without understanding. Becoming aware of aggravation, life risk and the neurological damage. Waking up with a start, alerted by her breathing, finding that she no longer reacts and dialing emergency services. All this happens within the deadly silence of the medical profession.
The image of the alcoholics' entourage is presented without distinction, co-dependent, co-alcoholic, incapable of change and making themselves accomplices in wanting to help. This image and sentence "you can do nothing about it, you are not a carer" paralyses the people around you and spreads shame and guilt. This sentence: "when alcohol appears, couples usually break up" describes the pre-formatted trajectory of our journey. Keeping us apart is so much easier than working to make us effective partners. This hinders the healing of the sick and is a terrible waste.
On your blog, you talk about depression and alcoholism as "silent and hidden" diseases.
The current image of alcoholism and depression contributes to the stigmatization and isolation of patients and their families. This simple google search "alcoholic family" returns more than 1600 results. Rather than being designated as victims at best or accomplices at worst and remaining silent, we must treat these diseases in the open. Giving all the contributors to the care process a clear understanding of the path is essential. The structures exist, the family and friends must know as soon as possible where to go for support.
What advice would you give to a relative who is currently taking care of a depressed or alcoholic person?
Do not stay alone, go to the facilities to meet psychologists, doctors, or nurses. Focus groups for family and friends exist in peer helper associations. This approach helps to make the person with an alcohol problem aware of how concerned their health and behaviour are to their loved ones. This may encourage the patient to consult or agree to meet with peer helpers. Every effort should be made to meet with doctors or caregivers.
Unfortunately, your wife has passed away. Why did you decide to continue the fight through your blog? Can you tell us more about it?
My approach is based on the duty to remember, the instinct to survive, the grieving process and the need to follow up on our fight against the disease.
I participate in discussion groups and I am in contact with associations. I have been denied the role of a caregiver, I hope to adopt the role of a spokesperson to tell my story to health professionals and improve care.
A final word?
I was the natural caregiver for my wife who was very seriously ill and I did everything I could to make that known. Regardless of the name and nature of her illness, I was legitimately entitled to expect like any other caregiver, support, accompaniment, sincere information, care. Under these conditions, being kept away is abuse. I just want to let it be known and acknowledge it in an attempt to prevent others from losing these opportunities.