Time for Feeding Tube ?

[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