FOOD FOR THOUGHT
Merlin Stone in her wonderful book, When God was a Woman, writes about the barbarians coming down from the mountains and inflicting brutality on what was once a peaceful, loving, egalitarian community. To me, ALS is one of those barbarians, inflicting destruction on the entire household, but especially on the family dining experience. Recipes, menus, food preferences are all up for grabs as whole new techniques and information must be learned anew.
Food consumes the days of patients. Those caring for them have to learn whole new routines, menus, preferences and techniques. Recipes that once focused on taste, preparation and presentation are no longer useful. Nutritional values based on lowering calories for weight loss need to be replaced by those that contain high caloric counts to foster weight gain. Emphasis shifts to texture with just the right consistency to avoid choking or sticking to the roof of the mouth or weighing too heavily on the tongue. Taste still matters because if the meal isn’t enjoyable, what’s the point?
I once tried to make an Italian meal with soy cheese instead of ricotta, thinking this would be a treat. Instead, the entire dish turned into a glutinous mass that was neither tasty nor edible. I cut fruit into pieces so small I could hardly skewer them onto a fork and still chewing was a challenge. Small grains of hamburger or rice can sometimes cause choking. Soup can be too thin and watery. Even water, a health necessity, can be challenging whereas tomato juice easier to swallow. Dairy increases phlegm making soy or rice milk products preferable. Six small meals a day can help keep weight on and are less exhausting making preparation and clean-up a fairly constant occurrence. Since thick liquids are easier to swallow than thin ones, it’s helpful to put everything possible into a shake – protein powder, fruits, veges, soy ice cream – an all in one caloric extravaganza that’s delicious.
Dinner conversation, once a pleasurable part of the dining experience, is a distraction an ALS patient cannot afford. It takes excessive concentration to chew and swallow leaving no room to listen to what someone is saying at the same time, let alone commenting. Any distraction can provoke choking so silence becomes the best option.
Wanting others to avoid traveling these same paths, I thought it might be a good idea to share some information. Some of this is on the web site under Self Help, but I hope you’ll participate in this opportunity to share recipes, ideas and thoughts about food preparation.
Hope to hear from you,
Barb
Food consumes the days of patients. Those caring for them have to learn whole new routines, menus, preferences and techniques. Recipes that once focused on taste, preparation and presentation are no longer useful. Nutritional values based on lowering calories for weight loss need to be replaced by those that contain high caloric counts to foster weight gain. Emphasis shifts to texture with just the right consistency to avoid choking or sticking to the roof of the mouth or weighing too heavily on the tongue. Taste still matters because if the meal isn’t enjoyable, what’s the point?
I once tried to make an Italian meal with soy cheese instead of ricotta, thinking this would be a treat. Instead, the entire dish turned into a glutinous mass that was neither tasty nor edible. I cut fruit into pieces so small I could hardly skewer them onto a fork and still chewing was a challenge. Small grains of hamburger or rice can sometimes cause choking. Soup can be too thin and watery. Even water, a health necessity, can be challenging whereas tomato juice easier to swallow. Dairy increases phlegm making soy or rice milk products preferable. Six small meals a day can help keep weight on and are less exhausting making preparation and clean-up a fairly constant occurrence. Since thick liquids are easier to swallow than thin ones, it’s helpful to put everything possible into a shake – protein powder, fruits, veges, soy ice cream – an all in one caloric extravaganza that’s delicious.
Dinner conversation, once a pleasurable part of the dining experience, is a distraction an ALS patient cannot afford. It takes excessive concentration to chew and swallow leaving no room to listen to what someone is saying at the same time, let alone commenting. Any distraction can provoke choking so silence becomes the best option.
Wanting others to avoid traveling these same paths, I thought it might be a good idea to share some information. Some of this is on the web site under Self Help, but I hope you’ll participate in this opportunity to share recipes, ideas and thoughts about food preparation.
Hope to hear from you,
Barb
I know it's often a scary step, however I fully support and encourage having a feeding tube inserted sooner rather than later. A feeding tube is easy to manage for a care giver and allows your loved one to get the nutrition and calories their bodies require. Food by mouth is still an option ... however now your loved one can eat simply for the pleasure of tasting the food rather than the necessity. The sooner the better ... b/c if you wait too late into the illness it makes the process of insertion harder and your loved one may have a hard time recovering from the procedure I know this all from experience, my husband passed away last year and we waited a bit too late to have the tube inserted. However once in, he felt better due to the increased calorie intake!!!!
ReplyDeleteIt's all about personal choice and how to keep weight from slipping away from an ALS patient. I'm so sorry to learn that your husband is gone. You must have been so relieved when he got the feeding tube. When the surgery is done properly, it can be relatively simple and minimally-invasive. Thanks for sharing this important information with everyone. Barb
ReplyDelete