ALS Disease: Caring for Patients and Caregivers
People living with ALS are continually faced with change and finding ways to cope with it. Patients, their families and professional caregivers all cite the difficulties posed by the disease’s lack of a set pattern of symptoms as well as its lack of a specific manner of progression. ALS onset and progression vary with each person. One spouse/caregiver describes the circumstances as“…so fluid…”
As decisions are required and reached, various coping strategies evolve. The progressive nature of ALS requires that patients and families continually find effective ways to cope with the symptoms of the disease. Learn as much as possible by reading and asking experts about ALS. (See Suggested Reading from our local ALS Association website below.)
Coming to terms with the need for receiving help from others—the need for a caregiver—is generally something most people are very slow to accept. It is emotionally difficult to receive intimate care from one’s spouse, children, or parents. Even the start of personal care by a professional nurse or aide requires time, patience and understanding.
Non-drug therapy help from caregivers
Check with your physician team leader for possible drug therapies like Riluzole (Rilutek) and for non-drug therapies that can help improve a patient’s quality of life. Common therapies that may help your loved one or patient cope with ALS include:
- Physical and occupational therapy – exercises and special equipment can help with symptoms and make it easier for your loved one to move around.
- Nutrition – a nutritionist can advise you on planning many small nourishing meals that can be served throughout the day. Encourage your loved one to eat even when his/her appetite is poor.
- Speech therapist – a speech therapist can help patients who are having difficulty speaking.
- Relaxation techniques – learning how to relax can help patients cope better with the illness.
- Massage – can decrease muscle stiffness and relieve the discomfort of cramps, and can also be quite pleasurable and relaxing for your loved one.
- Distraction – engaging activities (such as hobbies, video games and movies) that change the patient’s focus can help relieve symptoms.
- Psychotherapy – speaking with a mental health professional about the stress and frustration of ALS, and learning coping techniques can be beneficial for both you and the patient.
Caregiver help with disease-related symptoms
As ALS progresses, your loved one will develop new symptoms. The good news is that there are treatments for these symptoms. You can help by understanding each symptom and related treatment options. You can also help by knowing when to contact your loved one’s health care team.
- Muscle cramps and spasms – Stretching exercises, drinking plenty of liquids, and, in some cases, medication, can help.
- Swelling of hands and feet – Elevating your loved one’s arms or legs may help with the swelling. If the problem persists, talk to the doctor.
- Excess saliva and drooling – Medications can help dry out the patient’s mouth.
- Clogged throat and/or nose – This may be caused by the patient breathing through his/her mouth more than usual. Using a room humidifier can sometimes alleviate the symptom. If it persists, talk to the health care team about medications.
- Jaw quivering and/or teeth chattering – This symptom can occur when the patient is chilled, yawning, or speaking. If it becomes a problem, discuss treatment with the health care practitioner.
- Brief periods of difficulty breathing –If your doctor tells you that this is a temporary symptom that may come and go, you might encouraging the patient to breathe deeply, and getting fresh air from a window or fan also can be beneficial. Avoid strong smells, such as smoke, cold air, alcohol, and spicy foods, if they bring on the symptom. Ask the doctor if medications can help.
- Acid indigestion and heartburn – People with ALS and acid indigestion may have gastro-esophageal reflux disease (GERD). This can also cause coughing, bad breath, scratchy throat, hoarse voice, shortness of breath, nausea, and sleeplessness. Avoid things that cause indigestion such as caffeine, spicy foods, and overeating. The doctor can suggest medication.
- Speech problems – ALS causes speech problems that can make it difficult for your loved one to communicate. Encourage him/her to speak slowly, pronounce carefully, and to get help from a speech therapist when needed.
- Sleep disturbances – You can help by encouraging the use of relaxation techniques to relieve stress. If your loved one continues to have difficulty with sleep, discuss with the health care team.
- Depression and anxiety – These are understandable symptoms for ALS patients. You can ask his/her doctor about professional help and medication.
- Fatigue – Help rate and record fatigue in a fatigue journal.
Help for ALS Caregivers
Caring for the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the ALS patient often causes the caregiver to overlook her/his own needs eating properly, getting enough rest, taking time to pursue one’s own interests. Respite care can help to alleviate some of the stress and improve the health of the caregiver.
Utilize family and friends who are eager to be helpful. The next time a friend or family member asks you how they can help, tell them that giving you a break for the day or an evening, or even for a few hours would be the nicest gift they can give you.
In-home respite care usually involves a trained professional (often from a home health agency like Dakota Travel Nurse Home Care) who comes into the home to provide necessary care during a period of time when the caregiver is away or even in around-the-clock shifts. In some communities a church, volunteer agency or group may provide respite care by a volunteer. The level of training the care provider should have depends on the level of care needed by your loved one. For a free, in-home evaluation call DTN Home care at 701.663.5373.
A local long-term care residence, hospital or assisted living facility may provide respite care on a short-term basis (as determined by you and your loved one) and entitle him or her to receive whatever cares he or she needs.
The ALS Association (ALSA) has a Minnesota/North Dakota/South Dakota chapter. They offer respite services and/or information on respite care resources in your area. DTN Home Care is recommended by them. Call us today at 701.663.5373.
For additional information and tips on ALS, contact the National Office of The ALS Association at 1-800-782-4747, or at firstname.lastname@example.org.
Living with ALS: A series of six manuals provided to ALS patients and caregivers without charge by The ALS Association. First published by The ALS Association in 1997; revised 2002.1. Living with ALS: What’s It All About? 2. Living with ALS: Coping with Change 3. Living with ALS: Managing Your Symptoms and Treatment 4. Living with ALS: Functioning When Your Mobility Is Affected 5. Living with ALS: Adjusting to Swallowing and Speaking Difficulties 6. Living with ALS: Adapting to Breathing Changes
Our thanks to Anne Supplee and Jennifer Myhre of the Minnesota/North Dakota/South Dakota ALS chapter for their help in the preparation of this blog.