To tube, or not to tube (feeding tube pros and cons)

[emjoi]

I get the impression that there's a few stages in the decision.
Early in the piece, there is a Theoretical "Oh, I'm not going to do that!", but then eventually the reality of it hits home. Whatever you think of the "indignity" of it, it's better than the alternative.

The second hurdle is the simple fact that it's another notch downward. You don't want to have to admit to yourself that things have gotten worse. And that can lead to a delay in the descision that can cause unneeded suffering.

 

[Nita]

Why is my mum acting so weird nothing is sinking in shes not a bit well but why do i feel so angry and unable to cope My mum never slept all last night she sat with her coat on and opened and closed the door about fifty times. She came to mine about 12 30 am and paced up and down all day till 6 30 pm sat down slept for ten minutes and went home at 9 pm. Do you think there is any cause for concern.Help because i dont know what to do.

 

[dianelynn17]

Hi Speechie,
I am so proud of you. Just look what you started with this forum. I have
learned alot from you and others. I also want my Mom to have a feeding tube.
She is losing weight & I think like Al says that the sooner the better. She is
have some swallowing problems now & the speech therapist that use to come
to help Mom can no longer because she says that there is nothing more she can
do with Als & her swallowing. I kinda think thats bull. She also mentioned medicare
not paying anymore for this but with Moms DX I am sure she can receive alot more
help. She started noticing her one leg getting weak and slurred speech last
october. She is using a walker now & her speech is hard to understand. Some days
are better than others. Do you have any suggestions about what all she can drink.
I don't want her to dehydrate. I put thicker in her water and coffee but what else
can she have to drink. Poor thing looks so fragile. I am checking into the next visit
with her doctor on Jan 30th for opitions on a feeding tube. I bet she would at least
gain alittle bit of more weight. I would appreciate all you could tell me about the
liquids we can give to Mom. She has problems with dairy products. She seems to
cough alot from them. Again, I am proud of you and all the info I am learning
about just having you check into this forum. I wish Mom had you.
Have a Nice evening.
Diane

 

[hboyajian]

Dianne, my dad also has difficulty with swallowing and is on a completely blended food diet. He drinks juice with thick-it in it. Apricot or pear nectar was recommended by the speech therapist because it is a little thicker to begin with. The juices should not have pulp though, as the little bits of fruit can cause problems. He also drinks smoothies (yogurt, banana, strawberry, also ice cream sometimes). Your mom might not be able to have that because of the dairy, although yogurt might be different than plain milk. There are soy based "ice creams" which might work instead of the yogurt. We also put Ensure with it , which is a high protein, hight calorie drink also with supplemental vitamins and minerals. I also got some pretein powders that can be added to increase the nutritional value. You could put other fruits in it. I have used canned peaches also. There are several kinds of milk substitutes (soy or almond drink for ex. ) if you need a liquid that has some nutrition in it. Hope any of this helps. Holly

 

[dianelynn17]

Hi Holly,
Thanks alot for you help on this. Does your Dad have a tube? I will
surely try these things. I do have peach and pear nectar. How long
has your dad had this? My Mom has had it for about 1 1/2 years now.
Just got diagnoised. Sad.
Thanks again,
Diane

 

[dianelynn17]

Hi Christa,
So you have a feeding tube? I want my Mom to get one also. Can you tell
me alittle about it. What it details and how to take care of it. Mom does
have problems swallowing and we want her to get her nutrituits and not
to get dehydrated. Who also do we talk to about this. Any help would be
much appreciated. How long have you had als?
Thanks alot,
Diane

 

[hboyajian]

Dianne, My dad just got a feeding tube put in a week ago. He is now able to supplement his meals with tube feedings, which consist of Ensure and water to flush out the tube. His ALS doctor, a neurologist who specializes in motor neuron diseases, referred him to a gastroenterologist for the surgery to place the tube. The tube feedings are not hard to do. You heat up the water and Ensure (or other nutitional drink that your doctor might prescribe) in the microwave so that they are warm. Then use dispensers ( large plasic syringes) to insert the liquids into the tube. The dispensers have to be washed and boiled after each use. My dad needs another person to do the preparation and feeding, as he does not have the strength and coordination to do it himself. There are some down sides to it. Scheduling his life became more difficult, as the tube feedings are supposed to be done at an interval after eating by mouth. Since eating takes so long to begin with, he feels like his entire day is taken up with feeding. Before, he was able to get out of the house some for social interaction. My parents have to figure out a new schedule that works. He also has more trouble with having to get up numerous times at night to urinate. He probably was getting dehydrated before, but now his body isn't used to all the fluids. He is 84 years old, so a younger person might not have this difficulty. The other problem for him is that the surgery itself weakened him condiderably. I hope that he can regain some of the stamina he had before the surgery. He was weak then, but he is really weak now. This also might not be as much of a problem for a younger person. It has only been a week, so time will tell for him. However, the other option would have been to gradually watch him be able to eat less and less, and perhaps become unable to swallow at all. I think the tube feeding will strengthen him compared to not having it in the long run. It is discouraging for him at this time. I don't mean to discourage anyone else from getting a feeding tube if you need it. I am just letting you know my dad's experience with it thus far. I think he would have liked to know what might happen rather than be surprised by it. The doctor told him the surgery would be "no big deal" which has not turned out to be completely true for him. As I said, I am sincerely hoping it will be a positive choice in the long run.

 

[Al]

Hi guys. We do encourage both sides of the story here. The doctors can tell us all they learned in medical school but it is we who are living it that can really give honest opinions on what works for us and what doesn't. What is good for one might not be good for another but at least if you have read what someone else has gone through you can make informed decisions. AL.

 

[hboyajian]

Thanks, Al, I was a little concerned I was scaring someone away from a procedure that might be a good idea for them. As you say, with more information people are better prepared to make their own decisions. I would like to add that my mom called today to tell me that Dad has gained 2 pounds since he got the tube a week ago. Now he is 101.8 pounds. I know this sounds frighteningly small, but it is better than 97, which was his weight at the lowest point several months ago when he lost the ability to swallow solid food. He was gaining with the blended food regimen alone, but only 2 pounds in 2 months. This is the first time in months that Mom has called me and sounded genuinely happy about news regarding Dad's condition.
Dianne, in answer to your other question, my dad has had symptoms of ALS for 2 and a half years, but was only diagnosed in October of this year.

 

[edna may]

edna may

HELLO! THIS IS MY FIRST TIME, i WAS DIAGNOSED IN MAY 06 i AM ABLE TO HOLD MY WEIGHT BUT MAY SOON HAVE TO DECIDE ON A TUBE, MY FEEL ING IS I WOULD HATE IT, YET I BELEIVE I WILL DO IT WHEN ADVISED. MY INITIAL FEELING WAS TO DO NOTHING. I FELT AS LONG AS I HAVE TO GO LETS GET ON WITH IT. BUT I HAVE A VERY LOVING HUSBAND OF 60YRS AND THE THOUGHTS OF HIM MAKE ME WANT TO LIVE AS LONG AS POSSIBLE, T

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HERE IS MUCH TO APRECIATE IN THIS WORLD AND I PLAN TO LIVE ONE DAY AT A TIME AND MAKE THE BEST OF IT. JUST MY INPUT OF TO TUBE OR NOT TO TUBE. EDNA MAY

 

[CindyM]

Hello Edna May. I am so sorry you have this horrible disease. Hopefully this forum will prove a source of comfort for you and your family. I wish you peace and lots of support as you wrestle with the major decisions that this disease requires.

 

[hboyajian]

Both the ALS doctor and the gastroenterplogist told my father that the surgery to get the PEG tube inserted was "no big deal." This is probably true for most people with ALS. When he was diagnosed Oct. 23, the doctor told him he might have 1 year to live without getting the tube and 2 years with the tube. This is a big difference, so he decided to go ahead with the tube. My dad was 84 years old, however, and the surgery and/or the morphine pain killer he was given afterward affected him adversely. He was much weaker and discouraged because of this. A few weeks later, he was having greater difficulty breathing. This may have happened anyway, and have nothing to do with the PEG tube surgery. But because this happened so close together, it is hard for me to separate. My father passed away 2 weeks ago, just 19 days after the surgery. I have no way to know what would have happened if he had chosen not to get the PEG tube. Maybe he would have been with us longer, but later have become unable to eat at all and starved to death. Perhaps that would have been worse. Perhaps his breathing difficulties would have come on so quickly anyway. I don't know. However, I do know now that for a person over 80, the surgery may not be "no big deal." If you or your loved one with ALS are elderly, I would recommend considering this factor with your physician. Perhaps you could ask them to examine the data regarding older patients.

 

[Al]

The fun? thing about ALS is that we are all different. A small surgery for a 55 year old is a lot different for an 80 year old. I and many others on this forum have said before that you have to have the knowledge about the procedures and have faith that your doctor knows what he is doing and has' Your' best interests at heart. One more reason to be seen at an ALS clinic if it is possible. AL.

 

[anne]

My mom is on an emergency waiting list for a feeding tube. She is 75 almost 76. My mom's breathing has been fine up until now. I have been very nervous and scared about her getting this procedure done. After reading your post hboyajian, I am more so worried and scared. I guess I need to say lots of prayers. Anne

 

[hboyajian]

Anne, I really feel for you and will hold you and your mom in my prayers. I have no medical expertise, only my family's experience with my dad, which is just one person and may be an exception. Every person experiences ALS differently, so your mom may be just fine with the PEG tube surgery and it could be helpful in keeping her nutrition up now and critical to her survival later. However, if I had known how adversly my dad would react I would have taken a week off work right then. I was saving my time off for the Spring when I figured he would be yet weaker and need me even more as the disease progressed. Ask all the questions you need to of the surgeon. Ask about age if it is worrying you. Maybe there are precautions they will take or can reassure you about your mother's strength level regarding the procedure. As I said in the above post, maybe it would have been worse for my dad without the tube in the long run. Sincerely, Holly.