feeding tube questions

[sanderson]

My dad had a follow up with the ALS team yesterday, and one of the topics that was discussed was a feeding tube. Dad's breathing muscles are weaking and if was to have a tube , sooner or later would be preferable. he is still swallowing ok, but needs ++ assistance to eat. Dad is not sure whether he wants to go this route. We( being the kids) have tried to give him the information that he needs to make his decsion and his DR was very helpful as well. While I understand the benifts of a feeding tube, what I dont fully appreciate is what are the consequences if he decides to not get one? If he progresses to the point where his swallowing in comprised and he cant eat enough by mouth to maintain his weight, and his choking risk becomes great, I understand the increased risk of pnemonia due to aspiration. However , if he decides to still not have a feeding tube, and is unable to eat safely, or stops eating, what are the comfort measures? The thought of him starving , is so difficult to process. This decsion is entirely dad's and I will support him in whatever his decsion may be. I am just trying to understand the different paths we may need to go down. The Dr is repeating his breathing tests as well has ordered a swallowing test to be done to determine if there is any changes in his swallowing .

 

[sadiemae]

You will want to get the feeding tube before his breathing gets below 50%, because of issues with sedation during the procedure. Sooner is so much better than later, and he doesnt have to use it right away.

 

[sanderson]

His breathing numbers are in the mid 60's now. He has always been a "I'll get it when I need it type of guy" and even though we have tried to explain the benifts of getting it now while his breathing muscles will support the procedure, he still is hesitating. We have discussed that if he gets it and when he needs it, decides he doesnt want to use it, thats an option but if he doesnt get it, and later decided he would like to have a feeding tube, his risks are so much greater because his breathing muscles will have deterorated even more. In talking with him, he views it as just another way to prolong this disease and he figues that when he gets to that stage he wont be able to enjoy life and he frankly told me, its not much fun right now! I have tried to keep positive and explain that he could still enjoy his family and friends , go on outings ect. He is not being negative, thats not his personality, just very practical. I am finding this very difficult to process and find the middle ground between giving dad the information and trying to stay neutral so that he can make the decsion that he is comfortable with and wanting to strongly enocurage to do everything that will help him stay with us, because aftreall, he is the one living with this, we are just accompanying him on his journey.

 

[handinhand]

I had thought of not getting the feeding tube also....after all the reports on the forum about how much better life will be with the tube,I finally got one..not too soon either because I am now hardly eating anything by mouth....I also was very dehydrated...all of which would make my life right now miserable. For me and my caregiver....if I only have a year longer to live, I want to enjoy it ...these few months ahead will be my best time I have left.to take trips,see my kids,do what ever I can..... Oh I hope he decides to get one and soon....bless you both...these r all hard decisions we have to make...linda

 

[Phil M]

I understand it being his idea, but the way I see it. If he has any quality of life right now he should get it. Thats pretty much what I base my decisions on. When it comes my time to vent. My quality of life will decide if I vent or not.

 

[hopeful warrior]

You will find lots of information on in the forum vault regarding feeding tubes. The saying for ALS is to be prepared and get it before you need it (whatever it is). The feeding tube has literally saved my husbands life and quality of life.

 

[sanderson]

Thank you all for your responses. I have done alot of reading on past posts here in these forums and the information was great. I even talked to my dad about how folks on here felt about getting feeding tubes, and how those that chose to get one, felt that the tube actually enabled them to have a better quality of life, we also talked about people who chose not to get tubes and how this is an indvidual choice and each person has different reasons for choosing or not choosing.
It is so difficult to watch this horrible disease progress in my dad, who was once a very active, social, man. I want to , like everyone else who is going this journey with a loved one, make him comfortable, and maintain what quality he has. He has met this diseae with courage and strength,he truly is my hero. I am so struggling with , as I said beofre, walking the line between providing information and trying to convince him to get the feeding tube, when he may not wish that. What are his options if he choses to not get a feeding tube?

 

[Terri33]

So sorry you are going through this dammed if you do dammed if you don't decision, my mother got her PEG tube one month ago yesterday, she was 145lbs when she was first diagnosed, by the time she agreed to the tube she was 112. She didn't want the tube, but when her calorie intake dwindled to nothing she was obviously losing muscle quickly, muscle she obviously can't get back, she was so tired and weak it was heartbreaking. She decided she'd rather have the tube, to regain some strength and quality of life, the outcome is obvious if you don't get the tube...... Had my mom gotten it a bit sooner, i believe she wouldn't have fallen as far and as fast as she has. She is now 117lbs and gaining.

Be strong, whatever the decision, make it fully informed.

T

 

[Phil M]

You will find lots of information on in the forum vault regarding feeding tubes. The saying for ALS is to be prepared and get it before you need it (whatever it is). The feeding tube has literally saved my husbands life and quality of life.

I would definately be gone without mine. I lost 75lbs, and have not been able to eat anything by mouth in quite a while.

 

[BarryG]

I agree with Phil (and with everyone else actually), I have been totally tubular for 3 months and the last time solid food passed my lips was in November. I know that I would no longer be here having fun with the twitchers if I didn't have my peg tube.

Now I know that I have said in the past that I consider this to be more of a life enriching tool that an a life prolonging tool and I still believe this. My life is much more rich because I am alive!

 

[sanderson]

Thank you everyone. We will keep having these discussions with my dad and I will certainly let him know your responses. He has a follow up appointment with his ALS Dr in a month and Dad will probably have to make his decision then. I will let you know how it goes, and if anyone has any advice I am all ears