Dear Vanessa,
Can you share basic information about home care for people affected by ALS? My father has been diagnosed with ALS. Along with professional medical care that he receives, how can I, his primary caregiver, better cope with the day-to-day challenges of living with this disease?
- Lilian
Dear Lilian,
As ALS progresses, maintaining good nutrition may be a challenge. Consult your father’s physician regarding additional vitamins or nutritional supplements. Consider supplementing your father’s meals with high calorie shakes or a packaged product such as Ensure if he’s not eating enough. Frequent smaller meals rather than three large ones each day may be easier if eating makes him tired. Don’t rush him; give him time to take smaller bites, and to chew and swallow carefully. Softer foods (eggs, mashed potatoes, pasta) require less energy to eat. Share meals with him to make eating more enjoyable for him.
Swallowing may become difficult; refer to cookbooks that contain recipes and techniques to expand the variety of foods for easy swallowing.
ALS patients generally do not become incontinent but getting to the bathroom or getting on and off the toilet can be a challenge. Consider purchasing these devices: an elevated toilet seat, a handrail on the side of the toilet, and later a bed side commode. Bowel function is not affected by ALS but changes in diet, exercise and fluid intake and weakened abdominal muscles can lead to constipation. Encourage your father to drink enough liquids (6-8 glasses a day), to get adequate fiber in his diet (bran muffin and fruits), and to be as active as possible. Safety is a main concern; other helpful equipment includes: bath bench with rail and back, hand held shower, and power bath lift. Your father should bathe regularly and completely. Inspect his skin daily for reddened areas in the elbows, heels, buttocks, and coccyx. Keep his fingernails and toenails short and clean. Oral hygiene is very important. An electric toothbrush may be easier to use. A lip balm or petroleum jelly can be applied to the lips to prevent drying and cracking. Medical supply stores have small sponges on a stick for mouth care (to address problems with drooling).
Caring for a loved one with ALS is not easy. You need to care for yourself, too. Take an occasional walk for a breather. Eat healthy and get respite when you need it. Get support from friends and family; people like helping. Share your feelings with someone you trust or seek out an ALS support group. Set your boundaries in order to survive.
- Vanessa
