Living with a physically or mentally disabled spouse

For the able-bodied spouse, it is often a challenge to find his or her place.

On the occasion of the International Day of Persons with Disabilities on December 3, many couples are giving testimonials about their daily life and offering valuable advice. Here are two such stories …

In her wedding photo, dressed in white, 25-year-old Sophie looks radiant beside Cédric. Well prepared for the wedding, they seem to have everything they need for a successful married life. Eight months later, Cédric had a car accident and suffered a head trauma. With it brought an array of new realities: wheelchair, amnesia, space-time disorders, dependency, lack of initiative, obsessions, and more. Like millions of people around the world, Sophie shares life now with a disabled adult.

In addition to the pain of seeing the person you love so challenged, able-bodied spouses inherit almost all the responsibilities — a life transformed by many hours in doctors’ waiting room, where one must sometimes also face the challenge of a spouse who manages his or her emotions poorly in public. It is not easy for a partner to keep seeing themselves as spouse when the other has changed so completely with their disability and requires special care.

Alice, who is in her 50s thought she wouldn’t be able to cope when, after eight years of marriage, her husband was diagnosed with schizophrenia and depression. For spouses who live with a mentally ill partner, the first reaction may be one of astonishment, despair, or impotence. “How can I accept my husband when he no longer like the one I married? How can I take care of him without turning into a nurse?” When an accident or illness occurs after many years and the relationship has been sufficiently established, tenderness and loyalty is more apparent. But many admit that accepting the handicap, at least at the beginning, comes above all from a decision of pure will. “I couldn’t abandon him, but I admit that the temptation existed,” admits Alice.

“The hardest part is your social life”

Even though problems of logistics, child rearing, emotions, and sexuality assume an important place in the new daily life, everyone agrees that loneliness becomes a major issue. At a time when the right to individual happiness is becoming a top priority, Alice was told: “Why don’t you divorce him, staying is absurd, masochistic!” Sophie’s social worker even advised her to refuse to be Cédric’s legal guardian, to “rebuild her life.” “The hardest thing is my social life,” confirms the 41-year-old. Their group of friends is disintegrating. Between the ones who “don’t have the strength to see you like this” and the social ones who no longer find any reason to get together, invitations are becoming less and less frequent. “As a rule, only true friends and true Christians insist on staying in touch.” says Alice.

Most of the time, the friends will focus on the sick spouse. “How is André doing? Everyone starts with this question,” laments Alice. Able-bodied spouses can end up feeling like they no longer exist. Some, on the other hand, may be tempted to flee, to revolt against their spouse, who prevents them from maintaining friendships, or they may become envious of healthy couples. “I was jealous of other people’s happiness,” says Alice. “In January, I felt like crying in front of the greeting card pictures that contrasted with my shattered family.”

Some people want to live as if everything were normal. “I was afraid to talk about my suffering, I didn’t want to bother my children and I especially wanted to talk about something else with my friends,” explains Alice, who needed moments of relaxation and, she dares to say, more superficial activities so as not to get depressed. “It was pride and escapism,” she analyzes, “that cut me off from myself and from God. But I needed to digest, to get beyond this in another way.”

Returning to the fundamentals of the sacrament of marriage

Revolt is, in fact, part of the path of a spouse of a disabled or mentally ill person. Because, in the face of suffering, “there is no answer to the question ‘Why?’ And yet, God always gives the grace to overcome this trial, on the condition that we rely on Him.” Didn’t the disciples of Emmaus revolt when they thought that Jesus had died? This was also the case of Alice, who had a hard time accepting Andre’s illness. “I despised him, I longed for the man he had been.” For Sophie, too, this time of “mourning” was necessary: “Cedric had to accept himself and I had to accept him, it took me a long time to admit what I couldn’t change.”

In these injured couples, the able-bodied spouse is at the service of the patient. The art of being present without being burdensome is based on an adjusted vision of what a husband or wife is. However, knowing how to find a new conjugal bond is often a challenge for these spouses. “It’s not easy to retain admiration and love when people speak extra loud to my husband, or talk only to me, as if he were an idiot,” explains Sophie.

The problem can also arise with regard to children. To keep from being overwhelmed by logistical contingencies, Sophie and Alice have begun to return to the fundamentals of the marriage sacrament. Father Potez confirms that they can find real comfort in this. “The pillars of marriage — freedom, indissolubility, fidelity, fruitfulness — are a grace of the sacrament of marriage, not a constraint imposed from outside. Indissolubility, in particular, is a gift from God in response to the transient nature of the feeling of love.” This is a reassuring resource for Alice, especially at times when she “wanted to leave Andre on the spot and set off on a different journey…”.

Recharge your batteries and make a clear distinction between caregiver and lover

Finding the necessary resources for any couple in these cases is a matter of survival. For Alice, a job she likes, psychological support and an intensified life of prayer were decisive. “Without God, I wouldn’t have been able to do it,” also admits Sophie, for whom daily Mass is vital, in addition to the Sacrament of Reconciliation, an annual retreat … and phone calls to her sister. When the daily routine gets to be too much, she recites this sentence to herself: “Do what you have to do and be at peace with what you do” and delegates tasks, hiring someone to help out at home, keeping a few hours to draw energy from her sculpture work. “It’s to prevent me from losing myself and to be refreshed when I get home and care for Cédric better,” she explains. Alice, for her part, has started running, and doesn’t hesitate to say that the solution for her was also to sleep in a separate room, since her husband was waking her up every night.

Spouses of people with disabilities learn to live differently. Sophie, seeing that outings were becoming less and less frequent, decided to invite friends to her home instead of waiting to be invited. Alice deliberately let go, accepting the creativity of others. “At first, I thought I knew what was good for Andre. When I was invited to take him to the movies, I told them that he would prefer a one-on-one, but I soon realized that I was only creating more emptiness.” Their friends have since taken more initiative. Alice and Sophie feel less lonely, and have been able to avoid what is often a strong temptation for women: mothering their spouse. Sophie was able to get pregnant after six years of marriage, after she stopped taking care of her husband’s hygiene needs, leaving the maternal role behind for that of wife.

Both women are adapting to their new way of life, including cultivating a sense of humor and “educating their friends.” While she does complain too much about the difficulties related to Cédric’s disability, Sophie is trying not to dwell on it, and instead to move forward. At first, when Cédric was talking nonsense in front of everyone, I thought to myself: my life is a tragedy, but I’ve learned to deflect his fury,” she recalls, “and he’s gotten over it.” She finds alternatives and learns to play down the drama.

Accepting one’s own fragility and savoring the little moments of happiness

Alice is more open with her friends, as long as they also dare to share their own issues. “Before, no one would talk to me. They would say: ‘poor thing, what you must be going through, we are not going to bother you with our little marriage problems.’ But I’m just like they are!” Priests are also invaluable listeners, with hindsight and a unique, sanctifying vision of suffering. A phrase from one helped Alice immensely: “We ask the Lord to put an end to our trials, we believe that we will be happy when our hardships are over, but no, He acts fully within the heart of life.” After anger came acceptance. “Even if it is difficult to do so on a daily basis, I have learned to savor the little moments of happiness that are offered to me. Happiness is here and now, with my disabled spouse,” Alice concludes without anger. “Our common enemy is outside, it’s his disability, not him,” Sophie analyses.

To preserve their marriage, these men and women, more than others, have had to deeply reflect on the meaning of their marriage. “I also see the humor, the delicacy, bits and pieces of the Cedric from before. Like me, he has his talents and his limits,” says Sophie, who knows how to see her husband’s beauty beyond his handicap. The disabled person can also reveal the best of themselves to their spouse. Patience, self-sacrifice, and generosity then spread to those around them.

Olivia de Fournas