Amyotrophic lateral sclerosis, or ALS, has an impact not only on the person who suffers from it, but the entire family. This debilitating neurological disease---also known as Lou Gehrig's disease---has no known cure, so as the disease progresses and the patient becomes weaker, the family is expected to step up and care for him. Caregiving is a stressful job, particularly for family members who work outside the home or have other responsibilities.
Diagnosis
If you have a family member struggling with symptoms of ALS, you are likely feeling a lot of stress before he is even diagnosed. Early disease is often insidious, and you may even have days where you wonder if your family member is imagining the symptoms. As he goes through all the testing required for diagnosis, you bounce between fear and irritation, especially if diagnosis is slow in coming. Your family member will go through the stages of grief after diagnosis, and so will you. This is normal, but because everyone grieves differently, there will be some friction in the relationship.
Progression
ALS patients lose the ability to control voluntary muscle movement. You will need to assist in personal care or activities of daily living, and eventually perform these functions for your family member altogether. This can be stressful and awkward, especially if the patient is your parent or sibling. You should work out an alternative method of communication to use when your patient is unable to speak or communicate easily. This can be a pictograph, as is used for stroke patients, or just common words written on a piece of paper that you or the patient can point to. Most ALS patients do not lose intellectual capabilities as the body fails, so having a way to communicate helps everyone involved.
Self-Care
It is crucial to find a form of support as a caregiver for someone with ALS. Whether you use an online support forum, attend local meetings for caregivers or have a circle of friends you can go to, you must have support to deal with your role as a family member of an ALS patient. Caregivers commonly suffer from depression and can become sick from stress and the physical duties of caring for a patient. According to the National Family Caregivers Association, "Family caregivers suffer from major depression much more frequently than the rest of the population."
You also risk injury yourself when moving your family member once she cannot move her own body. Support groups often have educational resources available to show you the safest and easiest methods to care for your family member.
Planning Ahead
It is important for families to discuss end of life issues as early as possible in the disease. As ALS progresses, the sufferer loses the ability to move, speak, swallow, and eventually, breathe. By discussing the probable course of the disease early, you know the wishes of the patient related to feeding tubes and machines to assist breathing, so these decisions won't have to be made solely by you in an urgent situation.
End Stage
At the end stage of ALS, hopefully you will already know your family member's wishes. Many sufferers prefer to die at home, and home hospice is a tremendously helpful resource for assistance. There are also inpatient hospices, nursing homes and other facilities that can help you.
Whether you use a service such as home hospice, or have your family member go into a hospital or other care facility at the end of the disease, ALS changes your life. Taking proper care of yourself will enable you to better care for your family member.
