Receiving the news that a family member has been diagnosed with ALS, is a tumultuous and life-rending moment for the patient and family.
AL.S. is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As a result, all voluntary muscles in the body are injured and degenerate to a state where the patient remains confined to his bed, unable move and unable to communicate with his environment, fed by a PEG and ventilated by an oxygen machine after a tracheostomy. However, the patient’s cognitive and sensory ability is not impaired, and he is aware of his condition and what is happening around him.
This is a complex and difficult disease that causes the patient considerable physical and mental suffering. It presents the patient with many different and complex struggles and challenges that create a confusing and intensely emotional and draining reality.
The disease brings with it a continuous sequence of deteriorating physical loss and emotional impact. The loss of physical ability creates a reality of endless changes in the daily level of functionality and organization.
Along with these changes also come changes in family and professional roles that also evoke feelings of loss and frustration. These and other changes can cause a range of fragile emotions that sometimes contradict each other and add to feelings of confusion, chaos and helplessness.
As the disease develops, communication becomes increasingly difficult and eventually the patient completely loses the ability to speak. At this stage there is the need for Augmentative and alternative communication (AAC). Communication is primarily carried out by means of a communication computer with the Grid 3 communication software together with the appropriate accessibility method, for example: a head-controlled mouse, or EyeGaze system.
The use of the supportive and alternative communication systems requires great effort and patience from the patient and his family. As a result, in a large percentage of cases the communication becomes limited and sparse around concrete and basic needs only.
In addition, leaving home involves a great deal of effort from both the patient and the family, and is mainly reduced to “no choice” situations, medical examinations or emergencies only.
Dealing with the difficulties of illness and the knowledge of imminent death, the inability to leave the home and the intrinsic difficulty of interpersonal communication, raises serious emotions among patients such as: loneliness, anger, frustration, jealousy of the healthy people close to them, a feeling of isolation, the erasure of the self, the difficulty of finding interest and meaning in their lives, acute anxiety of the future to come and depression.
In most families, there is a fundamental difficulty in talking about the consequences of the illness and the fears that arise with its development, such as: coping with the fear of anticipated death and the need to make decisions about what to do next. In addition, patients often feel the need to “protect” the people closest to them and do not share their toughest thoughts and feelings with them, enhancing their sense of loneliness.
Against the background of all the above, a substantial need arose for emotional support for the patients and this led to the establishment of a support group through the means of a text messaging platform.
A text support group is a group similar to a frontal support group, but it is created with the help of a dedicated application developed in Israel called “7 chairs” that can be downloaded to a computer or smartphone and allows a six-person support group and facilitator. The group is writing-only, with no voice or picture, and the group’s participants can attend it wherever they are located.
In its appearance, the group is like a WhatsApp group, but unlike the WhatsApp group, the application allows for absolute confidentiality and the content cannot be exposed outside the group’s framework.
In most cases, participants do not know each other.
The group has been around for two consecutive years as part of the Israeli ALS Association (IsrALS) and is the first and only text support group of its kind for the ALS patients in the world.
Group Goals:
- Enable patients to create social connection and mutual support with other sufferers by sharing similar experience.
- Learning and mutual support of ways of coping with the concrete and emotional challenges that the disease brings.
- Breach the experience of isolation and loneliness.
- Creating a safe and accepting space for sharing experiences, thoughts and feelings.
- Provide opportunity to talk about decision making at significant junctures in dealing with the disease.
Issues that arise in the group:
- Thoughts and deliberations on the choice of longevity devices (peg, respirator)
- Dealing with the experience of total dependence on the environment; family and caregiver.
- Engaging in the experience of being “a burden” to the environment and the question of whether they are as “useful” as somebody who is sick – what contribution do they make to their immediate environment, to their family and children.
- Engaging in physical and emotional loss, such as: the loss of ability to work and feeling of being insignificant, loss of role within the family, loss of ability to eat and enjoy eating. The loss of a recognized personal identity, the fear of a complete loss of the ability to communicate and all that it implies, etc.
Subject of death: Anxiety from the process of the deterioration of the disease, a sense of responsibility and commitment to children and parents, engaging in approaching the “farewell”.
Subject of Hope: Is There Hope that you may recover? Or hope is the search for a way to find good in what exists?
The impact of coronavirus on the support group
The need for the support group increased even further during the Covid 19 virus period in Israel and around the world. During this challenging period, ALS patients seemed to express the universal experience: forced home confinement, social isolation and loneliness, uncertainty and anxiety about the future and the actual threat to life. For the patients, this period was difficult seven times over. Because ALS patients are defined as being in the high risk group for catching the virus, social isolation is more acute. They had to completely avoid leaving home, family and friends were banned from visiting, and all the para-medical treatments (such as our communication accessibility project, physiotherapy reflexology, etc.) were completely discontinued, which made their condition worse.
The meetings during this period were emotionally crowded and the experience was that “death hovers” in the meetings more intensely. Feelings of loneliness, anxiety, despair and a desire to end the suffering of the illness. At the same time, the ability of the group members and the facilitator to listen to the fears and thoughts of the will to die or the fear of death, the ability to accept without judgement and support one another without escaping was a very powerful and significant experience in terms of both the group experience and each individual within the group.
In Conclusion
The supportive and alternative communication system is of utmost importance in aiding assistance and emotional support to ALS patients. It is the only means that allows patients to share difficult experiences and feelings, breakdown the harsh loneliness of coping with the disease, share deliberations about decisions at significant junctures of the disease, and feel that there is someone who shares their fate and can understand the depth of what they are enduring.
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- This article was written by the IsrALS Karten Centre
- Featured in the Karten Summer 2020 Newsletter
- This article is listed in the following subject areas: Centre News