Time for Feeding Tube ?

[sweetpea]

I'm caregiver of my 56 year old husband with Bulbar Onset ALS. He struggles so with chewing and manipulating food in his mouth. He can drink out of a straw, and I think he is having problems with that now. It's as though he comes up gasping for air after a drink from the straw. He loses control of food, also, and has multiple coughing spells - eating or not eating. I read somewhere that if someone is coughing while eating they are aspirating - is this true ?

Our Neuro said that the rules for feeding tube are 2-3 bouts of non-weather related pneumonia. Is that his "rule" or insurances' rule? Hubby has lost weight (his normal lookin' good weight was about 155-160; he's now down to 146.) We met with the nutritionist who suggested upping his calorie intake, but if he's struggling to eat, is that the answer ? It takes the rest of the family 20-30 minutes to eat a meal; it takes hubby an hour to 90 minutes. He likes Ensure, and we try to get 2 in him per day !!!

Sorry this does not seem explained very well. We meet with the neuro again in April, and I just feel deep down that I need to be prepared......
Thanks in advance for help in this matter.........sweetpea

[emjoi]

Go talk to your Doc again.
If you ever feel like you Don't Know, then don't be shy, don't feel like you should wait... go ask someone who knows.

In short, you want it before things get too difficult.
You don't want him unable to eat, but waiting a week for the procedure.
It's a big emotional decision to do it, but comparatively minor as far as surgery goes.

[sweetpea]

thanks, emjoi.....my cousin once told me that "the doctors are there to SERVE you and your husband - that's what you PAY them for"!!!.....You're right about waiting for the procedure - he could lose even more weight before we get schedule for the "surgery"........

[Al]

He sweetpea. I've never heard of that "rule" for a feeding tube. Usually it is repeated bouts of choking and large weight loss in a short period of time and just plain difficulty in eating and drinking. Coming up gasping for air after drinking from a straw could be a signal of weakening of the lung and diaphram muscles. I agree with emjoi. I wouldn't be waiting until April for an appointment.
AL.

[sweetpea]

Thanks, Al....It just seems like this is happening so fast. We've had 2 lung capacity tests (if that's what ya call them), and he has had "marked decrease". We're scheduled for another one next week. He is no longer able to speak - at all. He's also been diagnosed with Frontal Lobe Dementia. He has no sensation in his eyes now, so the contacts were taken away by the eye doc. Just seems like we just keep taking away from him.... :(

He still has a sense of humor, tho. I'd asked him if he'd had his Ensure this morning, and he shook his head "no". I said, "do you want me to kick you in your b***?? He got up out of the chair, and turned his b*** towards me, so I "kicked" it with my big toe.....I love those moments.....

We have very little family support, so thanks to all of you for "holding my hand" thru all of this.....like your quote says, Al, live today like tomorrow may never come......and that we've been doing......sweetpea

[Al]

Sorry things aren't going all that well. If we can help at all let us know. Other than sending buckets of money. LOL. AL.

[Jamiet]

Sweetpea,

Everything i have read and everyone i've talked to, says that it was a great decision and it was not much trouble.

If he's having that much trouble, it will probably make things much easier.

I don't have one, but i think he can still eat and drink, but you can supplement his meals through the feeding tube.

Good Luck!!!

[edna may]

I also have been told to get a feeding tube. I made a statement on this forum a few weeks ago, saying " I would hate it but would do it" Recently I attended a support group, one of the fellows had just received his Feeding tube. he was happy with it & showed it to us. I was shocked, it was not what I had imagined. It made me realize I was about to make a decision with my eyes closed. I have made an appointment with our ALS nurse & plan to learn all I can before my final decision. I will fill you in after my appointment. I am sure many of you already have one. So any input would be greatly appreciated. EM

[lunarruna]

Sweet pea...
That thing about rules of having pneumonia before getting a feeding tube is just ridiculous--pneumonia is life threatening and to be avoided at all costs, esp for a PALS. A PALS with bulbar ALS knows a feeding tube is inevitable (if that is their choice), so most recommend getting them early before complications set in. If you are ready, demand a feeding tube or get a new doc. That is just hogwash.
We were very happy when my husband got his---took so much stress of eating, weight loss away.....they are a god-send.
Good Luck, Beth

[emjoi]

I also have been told to get a feeding tube. I made a statement on this forum a few weeks ago, saying " I would hate it but would do it" Recently I attended a support group, one of the fellows had just received his Feeding tube. he was happy with it & showed it to us. I was shocked, it was not what I had imagined. It made me realize I was about to make a decision with my eyes closed. I have made an appointment with our ALS nurse & plan to learn all I can before my final decision. I will fill you in after my appointment. I am sure many of you already have one. So any input would be greatly appreciated. EM

Edna, I know it looks scary to see someone else with it. But you seem like a woman who hasn't given up on life just yet. It may seem a bit of an indignity to use a tube, but it's a small price to pay to stick around with your family and loved ones a while longer.

[hboyajian]

It was recommended to my father that he get a feeding tube due to difficulty swallowing and weight loss. He never had pneumonia, but there was an increased risk of it because he was aspirating small amounts. In addition to being helpful to maintain or increase weight, having the tube was supposed to help avoid pneumonia. I think it is very strange that you would be told to wait on the tube until after suffering through 2 bouts of pneumonia, especially since pneumonia can be extremely serious if not deadly to a PALS. If you can, get an appointment directly with a gastroenterologist who would be doing the surgery for the PEG tube. This person would be able to answer many questions. Also, if you are concerned about the advice your neurologist is giving you, it could be worth it to seek out the opinion of another neurologist, preferably at an ALS clinic where people will have extensive experience with the challenges and needs you are facing.
While the PEG tube surgery is minor for most people, it can have adverse effects on an elderly person. The tube itself is not the problem there, but the affect on the system of the surgery itself can cause complications. I think I remember, Edna May, that you are in the older age bracket. I think it is worth questioning your doctors closely about this issue. It may still be in your best interest to get a tube, as the health problems without one could be worse than any trouble the surgery could cause. I am convinced that my dad's death was hastened by the PEG tube surgery. Our experience was different than most people here, I know, but one cannot assume that getting a PEG will automatically increase life span.

[quadbliss]

There is another serious health concern with not getting a PEG soon enough. If a PALS loses muscle mass due to weight loss, they will probably not gain it back. Obviously, you want to maintain all the muscle you can.

Mike

[edna may]

hboyajian, Thanks for the input, & yes you are right I am 8oyrs old. & the only reason I would go for it, is my husband & I are very happy together.(60yrs) if I was on my own, I would not have it done. I feel we are very lucky to have these choices. Many other illnesses the patient dies before you have a chance to say goodbye. We have a chance to mend any fences & let friends & family know how much we care for them. Have a good day everyone.EM

[anne]

Hi Edna. My mom just turned 76 and got the peg feeding tube on Jan 23rd. Eating became very stressful for her. She was choking on every bite and had just started to lose weight. 4-5 pounds prior to getting the tube. If you are thinking about getting the tube you should have it before you start to experience breathing problems. Anne

[edna may]

Thanks Anne, I already have breathing problems. I will make my decisionr Wed. after I talk to the ALS nurse. Have a good one. EM

[midwestgirl]

My mother was diagnosed with ALS Dec 06, but she had been having symptoms at least 1 1/2 years previously. She had been having tingling and muscle cramps for quite a while, no other symptoms, then in Nov 05, she was diagnosed with Foot Drop/ Mild Dementia. In March 06, I noticed a slight slurring of words, which has progressed to where she is difficult to understand currently. Now, she is having problems with excess secretions and swallowing, and is on a soft diet, supplemented with nutritional supplements. She had lost some weight ( about 15 lbs) but has been stabilized with the supplements. Her speech pathologist has recommended a puried diet, which she doesn't want any part of. When asked about a feeding tube she says "not now". She does only eat soft foods - eggs, cream soups, mashed potatoes, puddings, etc, but I do worry about her aspirating, or choking.

What do I do? I want to honor her wishes, but I am not certain she totally understands the risks. She wants to remain as independent as possible.

This is my first post. This forum is great. Thanks to everyone

[emjoi]

If it helps, you can point out that getting the Peg doesn't mean the immediate end to normal eating. She can still eat as long as she is able.

Similarly, moving from solid food to thickened juices doesn't have to be an either/or situation. Supliment the solids with the puree...

The "Joy of Food" is such a huge thing to lose. My dad would sit there carefully chopping up a piece of chicken into tiny tiny pieces. He really didn't want to give up that simple pleasure. So, I guess take it softly with your mum. It's not a small thing that is being asked of her.

[Al]

Hi Midwest. If your mom isn't losing weight now I'd give her a week or 2 to get her mind around what is going on here. If she gets the PEG she can still take food by mouth and if she starts to choke more or aspirate her food the tube is already in place. With these things it is better to be ahead of the game because it is hard to play catch up. If she hasn't come around in a week or so then get the doctors to talk to her again. It's to her benefit as well as yours. Hope it works out and welcome.
AL.

[anne]

Hi Midwest. Making the decision to get a feeding tube is very difficult. My mom decided on Christmas Eve that was her only chance to continue living. My mom is very mobile. She has bulbar symptoms. Can no longer talk. Eating, swallowing had become a complete struggle and watching her eat was like we were torturing her. She had only lost about 5 pounds prior to the insertion of the peg (Jan23 '07). Since the peg she has gained 2 pounds, her breathing appears to be better and she is not continuously coughing. Not sure what to say. It is a personal decision and at first there was no way my mom was going to entertain the thought of it. Now the stress of getting enough nutrients is gone. She will occasional try to eat something but knows when to stop. Good Luck. Anne

[sweetpea]

hi midwestgirl - yes, I am in a similar situation, but hubby doesn't think he has an eating problem. YIKES !!! I don't know how appropriate this is to say, but since we've been doctoring (2004), in looking back, the Lord has been before us in every situation. I was so worried about telling hubby he could not have contact lenses anymore - but I did not have to - the eye doctor explained it to him. Then the regular doc wanted him to have a PET scan - only available in East Lansing Michigan at the time. Cost was $4,000 or more. BCBS said NO WAY would they pay for that scan. I told my hubby that we could not afford that test - and he said "oh just drop it". Then we got a call from EMU, and they informed me that study monies would pay the cost if insurance would not cover. BCBS covered all but $150 of it, and EMU wrote off the rest. And those are not the only instances where I was so worried, and everything came out the best way to meet hubby's immediate needs. So, way deep in my heart I know that when the time is near, God will provide the answer and the readiness for the tube. My heart goes out to you - and you and your family are in my prayers.

This has got to be about the best support system there is - both for PALS and CALS. I feel so cared for here - thanks to all of you.......sweetpea (beth)

[sweetpea]

thank you, anne for the info - hubby is coughing alot, also, and can no longer say words. He cannot say his own name anymore. Thank you for sharing your situation - it helps guide others in their own situations.....sweetpea (beth)

[sweetpea]

oh, and Al - we'll try only 1 bucket of $$$$ - small bills, please.......(LOL back to ya !!) Thank you so much for being here.......sweetpea

[Al]

Wish I had a few to give some of the people here. We talk a lot about hope here and I still buy 2 lottery tickets each week. Maybe someday I'll get lucky. Might be a party then and some research money.
AL.

[midwestgirl]

Thanks to everyone for the advice and support. Mom has started the Transderm-Scop patch about 2 weeks ago for excess secretions. This has really helped, and she doesn't cough as much anymore. I am thankful for any small blessings we get. She has also increased the amount of thickened liquid that she is drinking. By having less secretions to deal with, she seems to be able to eat a little easier, although she is careful about what she eats. Just a little good news to share.

[edna may]

Thanks Anne, I already have breathing problems. I will make my decisionr Wed. after I talk to the ALS nurse. Have a good one. EM


Hello every body I have had trouble with my puter. I was not able to comunicate, I sat here biting at the bit & could not put my two cents worth in. now I am back in business's I have been given the word to get the tube. I have an appointment with the surgeon this coming Tuesday, I have a serious problem with my right lung so hope I can still get the tube. Wish me luck folks. All the best to all of you.EM

[midwestgirl]

Good luck Edna May - From all I have read feeding tubes seem to be a good choice for most. Let us know how you are doing. You will be in my thoughts and prayers on Tuesday.

[ltr]

Hi Edna May,

Glad your computer is working again! I will be thinking about you Tuesday and I sure hope that surgeon sees things your way! Leslie

[liz]

Good luck, Edna May. If I recall, you're looking forward to more time with that great old man of yours. I hope your procedure goes smoothly.

Liz

[anne]

Good Luck Edna. Getting the tube was a good choice for my mom. I pray the same for you and I hope everything goes well. Anne

[edna may]

Thanks Anne, I already have breathing problems. I will make my decisionr Wed. after I talk to the ALS nurse. Have a good one. EM
Anne I met with the Surgeon today & will be getting my tube next MondayEM

[Al]

Good luck Edna May. I'm sure that once the procedure is done you'll be glad you did it. AL.

[anne]

Edna.....Good luck with the surgery. Just remember it take about 10 days to recover from the procedure but I am certain you will be back on your feet in no time. God Bless. Anne

[edna may]

Thanks Anne, I already have breathing problems. I will make my decisionr Wed. after I talk to the ALS nurse. Have a good one. EM
HI There, I have educated myself enough to make a decision on the tube. I consulted with the surgeon & feel it is a wise way to go. So this coming Monday I will have my very own tube & learn first hand what it what it is all about. You will be hearing more from me on this subject. Be good to your selves. EM

[MtPockets]

May God Bless you Edna May as you go through this procedure and healing process. A little angel to watch over you.

God Bless
Capt AL

[midwestgirl]

This has been a hard week for my mother. One and a half weeks ago she had the flu - a basic twenty four bug, but after that she seemed to have more trouble swallowing. Five days after recovering from the flu, the doctor put her on Cymbalta - which she had a reaction to - another bout of vomiting. The medicine was dc'd, but swallowing still very difficult. Mom has decided maybe a feeding tube is a good idea. She wants to think on it tonight. Anne, you said there is about a 10 day recovery time - what should we expect after getting the feeding tube? I know there is a possibility of infection ( please, no!), but I was really thinking that after a couple days mom would be feeling much better. My mother is 76 years old, or will be April 18th, no respiratory problems yet. Any advice appreciated!

[rolark]

We had our first Feeding Tube discussion at our last clinic appointment.

Gail's problem is not as much with ablitity to swallow - as it is biting the inside of her mouth.

Gail has to be fed all meals now - which is time consuming. She chokes on pills when taken with water but can still swallow fairly well.

Manipulating food inside her mouth is very difficult and she continually bites the inside of her cheeks - they get swollen which causes her to bite them more!

The feeding tube seems to be a pretty good solution all round. We were told you can still eat what you want - (so Pringles are not out of the question!) when you want, but the stress of getting enough calories daily has been removed. Gail was only eating 1/2 pc of toast - without crust for breakfast.. 1/2 sandwich no crust for lunch... & small dinner. We started on 3 Ensure's a day. That brought back her appitite.

Also taking those dredded pills including Rilutek which bubbles up and fizzes when it gets wet will be much easier. Just pop them in the tube?

We haven't made the final call on the feeding tube yet - but talking to the Doctor made it seem like a much better idea than the stigma attached to it. Our one ALS friend with a tube said it was one of the best moves she made.

Tim

[landscape]

Just a general comment on eating problems. My husband has considerable weight loss and chewing is hard work for him. We have recently been avoiding bread and choosing soft tortillas instead. They seem to be a lot easier to eat--some brands seem more tender than others.

In response to the very first message in this thread, I'd feel that if someone was coughing while drinking, I'd avoid straws. They can deliver a large amount of fluid to the back of the mouth in a hurry thus making it more difficult for the swallowing mechanism to operate safely. Particularly as fluids are more difficult to control than thicker material.

As other people have commented I'd also be horrified to think that someone would be required to experience several instances of aspiration pneumonia before being considered for a PEG!

I've recently bought a copy of 'The Dysphagia Cookbook' by Elaine Achilles (at Amazon) and have found it to be really useful. I also got a small food processor that I could leave on the counter and it has been a great help for chopping meats. I already have a blender that gets a lot of use.

[Laurie Lister]

Hey sweetpea

My husband has bulbar and we went through the straw. Pureed food might make it easier for him to swallow. My husband was still able to eat some foods like pudding and scrambled eggs when we decided to get the feeding tube. It was the best decision we made because not long after he could not swallow anything not even water. Straws are dangerous to bulbar greater chance of aspirating, which leads to phonomania. Discuss this issue with your doctor. Better to have in to place before one day you wake up and he can't take anything orally.

Good Luck

Laurie Lister