In most people’s journey with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS care planning process, it is important for people with ALS to discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health.
As Feeding Tube Awareness Week comes to a close, we spoke with Craig Kloss and asked him to share his story about his personal experience with making this difficult decision, and the relief he and his family felt once they had made it.
Please tell us a little about yourself and your journey with ALS.
My name is Craig Kloss. I'm 58 years old, with a wife and three children. I've been married to the same wonderful woman for almost 30 years. When I was first diagnosed with ALS over three years ago, I couldn't believe it. At the time I was living and working in the Chicago area and had two children in high school and one child in grade school. The diagnosis completely upended our life. We had to make some hard decisions quickly which affected the whole family. For the first year after diagnosis our lives were an emotional rollercoaster. We've now settled into our 'new normal' and accept what comes.
At what point did you find out you should consider getting a feeding tube?
Within a month of my diagnosis I was presented with the unavoidable fact that I could no longer swallow food or even drinks. I was losing weight at an alarming rate and had become both dehydrated and malnourished. The specialists at the ALS clinic explained to me both the procedure and what life would be like after I got the feeding tube. They also gave me links to online information to help me with the decision-making process.
How did you feel when you learned it might benefit you?
Quite honestly at that time it felt like everything was happening too fast. I was still absorbing the fact that I had ALS, and now I was faced with a very big decision - get a feeding tube or starve to death. I certainly understood that getting a feeding tube was my only option, but there was a fear of the unknown. What would my life be like once I got the feeding tube? After listening to the specialists, watching the online videos, and talking it over with my wife, I decided very quickly that the benefits far outweighed any misgivings I had.
Is there anything you’d like to share about the experience of making the decision and having the procedure?
I understand that deciding whether to get a feeding tube or not can be a difficult decision. The procedure itself is not that difficult. Also getting used to using the feeding tube is fairly easy. Quite honestly having a feeding tube and using it on a daily basis is not as much of an issue as I thought it would be. I use a gravity bag twice a day to 'drip' the nutritional 'feed' followed by water into my stomach. For me, the process takes about 1 1/2 hours per feeding. It didn't take me long to get used to the twice-a-day pattern and now it seems like just a normal part of life.
How did your life change after the decision was made?
I'd like everyone who is thinking about getting a feeding tube to know that for me, it is the best decision I ever made. If I had not gotten the feeding tube, I would have passed away by now. I would have missed all the moments that make life worthwhile like my daughter's high school graduation, all the family birthdays, weddings, holidays, school plays, ball games, & concerts. That is what keeps me going and looking forward to the next day.
What would you tell (or advice would you give) someone with ALS who is faced with this decision?
My advice to someone with ALS who is faced with this decision is to ask yourself this question - do you want to give yourself a chance to stay alive a bit longer? In my case, I was in my mid-fifties at the time with a loving wife and three teenage children who I wanted to live long enough to see graduate high school if possible. There was only upside to my decision, no downside. So each person has to examine where they are in life and make their own decision.
The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty.
- ALS.org: Nutrition & Feeding Tubes
- ALS Association Resources Guide: Adjusting to Swallowing Changes and Nutritional Management in ALS
- Webinar: Promoting Adequate Nutrition - How a Feeding Tube Helps
- ALS Association Factsheet: FYI: Information About Feeding Tubes
- ALS.org Blog: What to Know About Feeding Tubes and Decision Making When Living with ALS
- Connecting ALS Podcast: "Feeding tubes and the Mind Body Connection"