« I accompanied my husband… » (Alzheimer's disease) Denise LALLICH (Interview with Denis SOLIGNAC ) in FRANCE CATHOLIQUE N° 2657 of 11 September 1998

Of all the diseases of the aging process, this is often regarded as the most terrible. If Altzheimer's disease has its human and social cost, the impact of which is increasing in our society, there has also been an increasingly active solidarity with the patients in the Association France Altzheimer which keeps the families informed of the latest research and offers them moral and material support.

Mrs. Denise Lallich, aged 74, has contributed over the last number of years to the accompaniment of patients and their families and from her lived experience she sketches an enlightening reflection on Altzheimer's disease(1). She answers our questions.

- The bottom line of your reflection amounts to the cruel question, concerning your husband : up till what point will he be able to remain human ?

That is the question that every family asks itself when it realises the gravity of the illness. Having reached the end of the road, I know that these afflicted men and women, wounded in their entire being, have something to give us and even to teach us right up till the moment of death separates us. This is the case, if we know how to listen to them, if we manage to hear them, even when they « un-speak » and even when they no longer speak at all.

The patient is immersed in his suffering ; he has lost the intellectual representation which gave him a hold on life and enabled him to remain in control of it.

- How do you see the evolution of this illness ?

I tend to see my mind like a big library which has slowly filled with books. At the onset of the illness, my husband's brain registered less and less ; that is to say less regularly and making mistakes. This was the loss of immediate memory. Then the search for volumes already in print became more and more difficult. There came a time when this search became disorderly. His knowledge appeared muddled or at the wrong time ; as if there were errors in his filing system. Then I had the impression he had lost his filing system…

- What is striking in these patients is the loss of structured thought, the incoherent expression of feelings and sensations…

Through logical thought, all of us classify, compare, order and express something coherent by relying on our memory. In these patients, the feelings, sensations, perceptions no longer pass through this organising thought process which is the bridge which makes communication with others possible. The neurologist explains to us that they first of all lose the explicit memory - what is understood, registered, classified - but that they retain the implicit memory - that is to say the memory of what is experienced, felt but not intellectualised. The patient is immersed in what he or she experiences ; he or she has lost the intellectual representation which kept him in control of his life.

- Confronted with this loss of control, you say that one must look for ways of putting emphasis on action, feelings, sense of touch. And you stress the importance of family, social and religious rituals…

Rituals are milestones, means of stimulation. They give a kind of rhythm to time, like Christmas and Easter, they are pleasurable mements which help the patient to re-situate him or herself in an identity. A lady whose mother is very agitated told me : « the only way to keep her quiet is to put rosary beads in her hands and she recites the rosary fervently, if not accurately.» For my part, I had to stop taking my husband to Mass because instead of singing the psalms, he would whistle them vigourously. A friend of the family, a Salesian priest, came quite often to celebrate the Eucharist at our home when my husband was listless and bedridden. Each time, I brought him in his reclining chair so he could attend the Mass with us . He would doze off and, regularly, at the consecration, he opened his eyes with an expression of « understanding » until we went to offer him a sign of peace and then he fell asleep again quietly. Certain chaplains have told me that when they visited patients they suggested praying with them and the latter often managed to remember the words of the prayer and looked very happy to recite them. In such instances, they may be upset by their inability to participate. They will perhaps weep. But emotion is still a sign of life. Let us not turn them into mummies.

- As the wife of a patient, you were sensitive to the spiritual dimension that arises…

Who has not heard the son say : « That's not my father any more ». Or the doctor : « You must put your husband in an institution, he is going to become like an animal ». And the question, more or less formulated : « Is he, she, still really human ? » We imprison the man or woman in an image from which there is no way out : and it is this image we love. But he or she has another reality which our imagination, in all its forcefulness, is unable to grasp fully. The patient cannot be reduced to what we can observe. We will never know where the borderline is, and so we have to pass over from all-powerful knowledge to trust. It is in this way that we preserve his dignity as a person, and his place amongst us.

- You, yourself ask the question : What remains when one is confronted with a body devoid of consciousness ?

When faced with a person who is no longer able to testify in his own words, it is up to the others to testify for him, or her. They become that person's guarantors. We who loved the person become more especially his or her guarantors. When the patient can no longer ensure his or her own dignity, it is our way of looking upon him or her that restores it.

We have to admit that the beloved one is far from the image that we had of him, or her.

- This shared dignity, is it a long road ?

The patient needs us to stand firm. We may be tempted by denial or anxiety and, with the passage of time, by heroism and stoicism, or the resignation of the victim. Then, we see that we can remain ourselves while keeping a distance which is not a lack of love since it enables us to live with the patient, without living in his stead. And he has such need of us, of our stability, of our creativity, our vitality !

The Altzheimer sufferer, even if he is still young, feels a loss of capacity and even of identity. This brings on thoughts of death, which he often expresses at the onset of his illness. We must help him to find the logical coherence of his life, looking anew at what is passed in order to fit the pieces together, to remember the happy things and to fight against the regrets. It is our task to reconcile him with his own self by showing our awareness of the wealth of his life and by turning his gaze towards a positive past. We must live with the patient in the truth. If we respect him, we must speak to him, even if we do not know what he will hear or how he will understand it.

- You lived this new life with your husband in a certain « spiritual nudity », stripped of self; Can you be precise ?

One has to manage to let go and to accept help, to trust others. There is a sort of parallelism between the patient's path and our own. He gradually loses his grip on creatures and things, his ability to understand a situation, to cope with it. We have to admit this turning point in our life, which we have not chosen ; and we have to accept that our beloved one no longer conforms to the image we had of him. It is a school of humility, if we are able to take on these forms of poverty which I, personally, experienced as humiliations…

- As a Christian, you could meditate in the time of trial, with the Lord…

When Jesus came to live among men, he came as a child, poor, powerless and wordless. The « demented » person, gradually becoming wordless, approaches this mystery. He is nothing any more, since some people even wonder if he is still human. It is really a form of crucifixion. And as for us, we find ourselves at the foot of the Cross.

- And our suffering…

Unless the seed dies, it bears no fruit (Jn 12 :24). Suffering is the event that we encounter, as well as the thunderbolt of love. This event is a masked knight. Emmanuel Mounier writes : The event is our inner master. We do not know what path he will enable us to discover. In saying this, I am not forgetting the days and years of the pain that blinds one, of the anxiety that is terrifying. But, bit by bit, one can discover self-abandonment/trust, on a path that one has not chosen. And one finds a kind of peace, which finds an echo in the person in our care. Continuing to hope, in that moment, is like walking in the night, together with the person entrusted to our care. It is showing that he is not reduced to his state of health, or his intellect but that his being is other than his appearing and his faculties that are gradually disappearing.

Reported by Denis Solignac