A guide for family and friends
Both psychological support and practical help are very important in the life of an ALS patient.
Accepting ALS is not equivalent to giving up. It must be the first step to make the best out of it. After all, a lot can be done to help someone with ALS to lead a productive and enjoyable live.
As a member of a family or friend, the most important contribution you can deliver is psychological support.
One has to remain positive without trivializing the situation. There is no point in claiming that everything is OK and that ALS is NOT a serious problem. The patient knows better and will “filter out” considerations if they seem incorrect; your chances to offer support will suffer accordingly.
On the other hand it is useless to freeze at the negative aspects of the disease. Neurological research evolves steadily and nobody can predict the timeline of a medical breakthrough. These facts give hope and hope is a crucial part of life. Family members and friends should try to find a balance between hope and reality, which is not at all an easy task. For some ALS patients and their family a priest or clergyman may provide a source of strength. Such a supporting role is also fulfilled by the ALS League, which is committed to help people with ALS and their families to cope with the disease.
The importance of communication
Keeping an open communication is an important aspect of the support to be offered. ALS patients need to be confident they can verbalize their feelings and find sympathetic listeners who won’t judge them, at all times. If third parties react badly or try to minimize their fear, they should be quickly told to keep their feelings to themselves.
The most important role of family or friends is probably that of a good auditor and observer. There must be a climate in which all family members can express their feelings about ALS in all honesty.
Children of ALS patients
Even though ALS is not prevalent amongst young persons, children may grow up in a family where father or mother is an ALS patient. It is important that family members and caregivers free up time to talk to these children about ALS and the impact of the disease on their family. Be as open as possible near kids because mystery makes everyone uncomfortable. Children easily give themselves the blame of sadness and often feel guilty because they do not know what's happening. Encourage them to talk about what they feel or to cry when they need to. They should be confident they can ask questions and get answers. Let children help if they want to, because it gives them the feeling of being valuable and meaningful. Engage them in planning family activities in which the ALS patient takes part.
Explain to them that a change in the look of the patient does not mean that his / her feelings towards them have changed.
Make sure life continues as naturally as possible. To this end, we offer a series of children brochures on our web site.
Take the time to take care of yourself
The inner circle of the family will probably get involved with the daily care and help for the ALS patient. Most ALS patients stay at home and the burden for family members can be physically and mentally heavy.
When the patient badly needs help, the partner barely has the possibility to leave him or her alone during the day. If the patient is often awake at night as well, and needs help to go to the bathroom or to turn over in bed, the partner could become irritated and exhausted rapidly. The close caregivers, like the spouse or grown up children, could find that caring for someone with ALS in an advanced stage may absorb the bigger part of their life. Evidently, close family members will do anything within their possibilities to help a loved one, but there are to be limits to the self-sacrifice.
When a strong character, who’s used to firmly control his/her life, is struck by an invalidating disease, he or she might react by projecting his/her desire for control onto others. Some ALS patients may become fairly demanding. If this is the case, it’s extremely important that family and patient discuss the situation to come to mutually acceptable levels of family availability. If they won’t come to an agreement, it might be necessary to talk the problem over with a social assistant or a psychologist.
In the final phase of the disease the patient may become anxious, demand extreme amounts of attention or express continuously his/her frustrations to their direct caregivers. It may therefore become necessary to engage extra family members and friends in the assistance schedule. Eventually professional home and family care may become indispensable. When patients are ill for periods of over five years, maintaining all care at home may become an increasingly heavy emotional burden. Revalidation day-treatment or day-nursing in a specialised home may possibly create some space for the patient’s relatives. Most family members want to care for an ALS patient in their domestic circle as long as possible, but most often don’t have the required experience to look after someone suffering from a quickly invalidating and fatal disease. The involvement of professional assistance personnel may, in combination with good coordination and task management within the family, solve a lot of (practical) problems.
Furthermore, caregivers need to continue living their own lives. Spending time in the company of “healthy” friends and family, maintaining hobbies or activities besides caregiving are important. They allow caregivers to recover from stress and worries and hence will support them to become better and more cheerful helpers. Don’t hesitate to ask extra family members to join in to allow the day to day caregivers to regularly take a break.
If really necessary, paid assistants can replace caregivers for a while. The social assistant, being part of the medical ALS team, can supply any information on the kinds of help and the payment modalities available.
Practical help / The nursing team
A multitude of medical caregivers can help ALS patients to cope with the limitations inherent to the disease. A family doctor will refer patients to a neurologist, specialized in nervous system disorders, who can confirm the ALS diagnosis.
- Social assistent, psychiatrist, psychologist
If the ALS patient has emotional problems or if a family member suffers from stress, the family doctor can be asked to refer them to a social assistant, a psychiatrist or a psychologist. They are authorized to offer family counselling.
- Occupational therapist
An occupational therapist can give advice on techniques and equipment to allow the ALS patient to continue his daily activities. The occupational therapist may also train the patient and his/her caregivers to deploy the different mobility tools in the best possible way, to optimize autonomy and to maintain the familiar lifestyle. The occupational therapist can also, via home visits, evaluate if the living environment of the ALS patient needs to be adapted. It is in any case very important to consult an occupational therapist before buying any equipment.
- Physical therapist
A physical therapist can offer exercises to stay supple and to strengthen any unaffected muscles. He/she is also the best qualified person to train patient and helpers in the optimal use of any prescribed tools.
A dietitian will help to maintain a balanced diet if chewing or swallowing problems start hampering a regular certain nutrition.
- Speech therapist
A speech therapist can teach the ALS patient possible ways to maintain his/her verbal communication as long as possible. They are also experts with regard to the different available communication tools. The occupational therapists advice is important when acquiring any communication tools. The ALS patient has to be physically capable to use it to full extent.
If breathing problems arise, one may want to be referred to a pneumologist.
- Recreation therapist
Some ALS teams ca appeal to a recreation therapist to help the patient to develop and maintain relaxation skills.
- Pastoral helper
A pastoral helper can also be part of the ALS patient’s team.
- ALS League
The ALS League can be called upon to answer certain questions, to obtain tools, to support requests at the VAPH, to apply for compensations or to just have a chat when you need it when you’re feeling depressed.
In an early stage of ALS, patients can continue having a bath and washing themselves without too many adaptations. Special duct tape or stickers on the bottom of the bathtub can prevent slipping and a handgrip next to the bath is convenient to get in or out of the bath. Later on a seat can be useful or it may become necessary to help the ALS patient in and out of the bath. As always, when lifting techniques are involved, caregivers should be given adequate training from a physical therapist to avoid excessive physical effort. In a later stadium of the disease a bed-toilet may be the best possible care equipment; the ALS patient should be encouraged to help him/herself to the extent possible. Both the caregiver and the patient should be introduced to the right technique by a nurse.
ALS patients should cut fingernails and hair short. If someone has always coloured his or her hair, there is no reason to quit doing so. A separate hand-held showersprayer, can be of tremendous help when washing hair.
Since involuntary muscles are not affected by ALS, patients usually retain control over bowel and blatter muscles. A handgrip next to the toilet can help to get on and off. A high fluid intake is advisable to prevent urinal infections. A dietitian can help choosing meals that favor a good bowel functioning.
Constipatian is a running problem for people with ALS
It is important to maintain personal hygiene and makeup habits to the extent possible. Knowing that one looks at his or her best can be an important boost for morale. Everybody, including ALS patients, will be encouraged by paying him or her attention and complimenting him or her, just like before. The independence and the privacy of the patient should be respected for as long as possible.
Chewing and swallowing problems are common problems related to ALS and will eventually become a trigger to change the diet of the patient. The advice of a dietitian is of utmost importance to make sure an ALS patient maintains a balanced diet and tis even more so when swallowing becomes difficult. In the initial phase mincing solid food, like meat, might be the only adaptation necessary. In a later phase a mixer or kitchen robot can be used to make soften the food, so one can still have the same diet as the rest of the family. Thin fluids may be thickened for easier swallowing. Meals can become slow and cumbersome processes for some ALS patients, whereas others keep on having relaxing, enjoyable meals in the family circle . The patient should not become stressed, because this increases the risk of suffocation or hamper an appropriate food intake. ALS patients should only eat when they feel able to. A helping hand can do wonders when they feel too weak or too exhausted. The best solution for “eating fatigue” can be to switch to five or six light meals a day instead of three heavier ones.
Activity and relaxation
ALS patients usually get prescriptions for a daily routine of movementamplitude exercises. A physical therapist will train both patient and helper in the appropriate techniques. The daily routine should be maintained to keep the joints and muscles flexible. During the progression of the disease exercises will be adapted and the role of the helper will increase.
At the beginning of the disease, “active” exercises will be prescribed, which have to be performed by the patients themselves. These exercises will subsequently be replaced with “active supported” and “passive” exercises, where somebody assists in performing the exercise or performs it himself instead of the patient.
As an assistant one has to be trained by a therapist and be available daily. ALS patients must be stimulated to be as active as possible, but should never get exhausted. Exhaustion will consume the energy the patent needs for the activities he or she really likes doing or really has to do.
A cane or walking frame will insure mobility for people with weakened legs. Eventually a wheelchair will become a necessary tool. It is important that a suitable wheelchair is prescribed. Quite some models are available, some types have useful accessories available. To be sure the wheelchair serves the needs of the ALS patient as long as possible, the advice of an ergotherapist may be invaluable. He/she knows which model is the “best buy”. This therapist can also explain how to provide help when the patient needs to move from a wheelchair to a car, from a wheelchair to a common chair and from a wheelchair to a bed.
Excursions are good sources of moral boosts. Everyone appreciates a change of environment and a break in the daily routine. Many public places like art galleries, musea and theatres are accessible to wheelchairs as is also the case for many restaurants. ALS patients should be encouraged to go out and enjoy themselves in company.
ALS patients with limited mobility or with muscle weakness, may still enjoy recreational activities in the company of family and friends. Playing cards, chess or other board games are enjoyable social activities and moreover card standards exist for people with grabbing/gripping problems. ALS patients can still paint, write books or garden with the help of supporting devices when needed. Watching TV, listening to the radio, a music installation or to spoken books (available at public libraries) remain possible. Reading out loud in group used to be a common activity in the past and may still be an agreeable alternative to watching TV.
Whatever the chosen activities may be, try to practise them in a social context! ALS can make patients feel isolated. The most valuable help family and friends can therefore offer is their company, their willingness to listen, their loving involvement of the ALS patient in family and group activities wherever possible, their support when necessary and the tact required to estimate when it is not necessary.