The ALS ice bucket challenge has done a lot to raise awareness and funds for this disease.
If a family member or a loved one has ALS (Amyotrophic lateral sclerosis), you are probably well aware of the symptoms and treatment available. For those readers who are not so sure, the disease is a neurodegenerative one in which the motor neurons controlling the muscles no longer work or are severely impaired. The result is that the muscles start to waste away and this leads to progressive paralysis. The ALS Association is committing $99 million to research which you can check out on their site.
The only FDA approved drug which can help to slow the progression of symptoms is Rilutek (riluzole). Research is ongoing but there is a long way to go.
But this post is really about how you can support a loved one who has ALS. It will try and help you to understand what a person who has ALS is going through and the best possible ways you can help and love them even more.
1. Get help and support
The first thing is to make sure that you are connected with an ALS charity or foundation in your country or area. They will give you lots of information and provide you with the support you will need. You can find your local chapter if you are living in the USA here .
2. Decide what type of care you can be committed to
Much depends on the stage of the disease. In the early days you may be able to take care of your loved one at home. Many ALS sufferers are able to go on working for a time. There will be things to consider such as getting the home help you need and also the financial implications. It will become a 24/7 job with the need for a respirator and other equipment. This is why you may have to consider a critical care center because you may be unable to cope.
Most caregivers will go through various stages of anger, fear and isolation, not to mention the financial worries. Exhaustion sets in and it is important to have shifts so that you can rest and relax at times. But life goes on and it can be a great opportunity to strengthen ties with loved ones and still find joy in spite of the monstrous difficulties. The main aim will be to search for a quality of life for the patient which is acceptable.
3. Acceptance and reaction to ALS
Both the patient and the caregivers have to come to terms with an enormous burden and one which will have life-changing consequences. Everybody reacts differently and social, cultural and religious upbringing will all come into play. There may be anger and denial or acceptance and determination to make the best of it and several other mixed reactions in between. Time may also help or hinder the process of acceptance. Each stage of the disease involves decisions about care and mobility. Patients may hate having to use a wheelchair. They may agree to use it on certain occasions or for some outings until they fully accept it as the only means of mobility they may have.
4. Learn and empathize
Learning about the disease is a great way to understand what is going on in the sufferer’s mind. If you are not empathetic enough to realize what they are going through, try the following:
- Imagine your mouth is full of marshmallows – try speaking
- The fork you need to lift the food to your mouth weighs ten pounds
- Try sitting in a chair and do absolutely nothing for ten minutes. You cannot move any limb in your body but you are able to move your eyes and see. Look around you for all this time and see how you get on.
- Try lying in bed without moving for twenty minutes. No, you cannot turn over or move your legs or arms or even scratch your nose.
- Walk up the stairs with heavy weights attached to your ankles.
5. Understand their needs and behavior
The ALS sufferer has to come to terms with a very uncertain future. Nobody knows how fast the disease will develop. They will worry about being a burden on their families while seeking to be independent and maintain a decent quality of life.
6. Watch out for abuse
If you are not the main caregiver, you may have to look out for signs of abuse. It sometimes happens that caregivers react to the stress by being sarcastic, complaining and swearing. It can also happen that they resort to physical abuse such as attacking the sufferer and deliberately roughing them up. There have been cases where the caregivers refuse to give medicines and also give them tranquilizers so that they are not overly disturbed by their requests.
The ALS sufferers sometimes become abusive towards their own loved ones and caregivers. This is one way they have of directing their anger, grief and isolation to whoever happens to be around. There may be cases of refusing to collaborate, complaining all the time and never thanking the loved one for their support. This can be very painful for those trying to give love, help, and tender care.
7. Keep the relationship the same as before
Don’t let ALS change your relationship status with your loved one. Both parties should be aware that they are not going to use the disease to gain advantage or power over the other partner. Depending on a loved one should never be an excuse for bad behavior or wallowing in self pity. The care questions and decisions should never be mixed with ones concerning your relationship.
8. Don’t make decisions on your own
If you have to make decisions about any changes for mobility, diet and hygiene, make sure that the patient is fully consulted (as far as the disease will allow). Joint decisions should be taken on the following:
- Walking aids
- PEG tube
- Adapted car/van
9. Help the patient be active
Even if it is just making sure that bills are paid online or making a shopping list, these can help the patient feel more useful and that she or he is helping in little ways. It also means that they feel less dependent and can still have a role to play.
Exercising together when and where possible is a great way to bond. Usually walking, swimming are recommended as they are low impact. The patient will also be given physical therapy as the disease progresses which will help with cramps and numbness. Speech therapy often helps when speaking becomes more difficult.
10. Encourage patients to live for the moment
Depending on how serious the illness may be, there will be many opportunities for the person with ALS and their caregivers to savor life and nature. There may be more chances to use:
- Reading (page turners, online books and audio books are all available)
As we have seen, there are many ways of supporting and caring for ALS patients. Empathy, bonding and support for caregivers and family members will be key factors in helping to maintain quality of life.