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My husband has decided against feeding tube. At this time, I am having such a hard time time having him drink 1 or 2 insures a day. This is breaking my heart watching him go down hill daily. He was diagnosed with ALS October, 2006. If anyone can give me advice on how anyone else has handled this. With a lot of prayer and faith we are trying to take one day at a time.
Hi,
The majority of us dealing with this disease face situations and decisions we never dreamed of, heard of, planned for, and are definitely not prepared for. And, amazingly, "professionals" aren't much help in telling us exactly what we can expect "next" because "next" seems to be different for each PALS (Person with ALS). That really creates a problem for us CALS (Caregiver for ALS). We're caught in the middle of loving our PALS and wanting them to "stay" with us as long as possible, but unable to get answers as to how we can do it because NO ONE can tell us HOW to do it tomorrow because "tomorrow" for one isn't the same for another. It becomes a vicious circle of "we don't know".
Thankfully we do have a resource that comes as close as possible to helping us in any given situation as this disease progresses - each other - all those who are facing a similar, maybe not exact, situation we face day to day.
My wife was dx (diagnosed) with "Progressive Bulbar Paralysis" Jan. 16, 2007. At that time only her speech was affected. Since then her breathing, weight, and strength have deminished significantly. She cannot expel mucous because she cannot cough with the strength needed to dislodge it, and she salivates (slobbers) constantly. She can still eat some foods (soft) but chokes sometimes trying; and liquids (water, tea, coffee - she loves) create major problems (swallowing and choking) which affects her breathing - she can't breath and choke at the same time.
She relys on a BiPAP to help her get the oxygen she needs and eliminate the CO2, a Cough Assist machine to help eliminate the mucous, and a medicine to help with the saliva. So, there are things that can be done to "help" at various stages of this disease. as demonstrated by the "help" my wife has received.
She fought the swallowing and choking as long as she could before admitting she needed help to maintain her weight and strength as long as possible. She didn't have to get the "help" she needed, but she chose to get a feeding tube so she would have more time with her family, kids, and grandkids, who she loves deeply. Maybe that's the key - love for those who mean so much to us. That kind'a makes you want to "hang on" sometimes.
A PEG (feeding tube) really isn't that big a deal normally. I can tell you about our experience, and the results so far.
First, make darn sure EVERYONE dealing with the procedure, (nurses, Anesthesiaologist, Surgeon, and staff), KNOWS they are dealing with an ALS patient. Explain IN DETAIL possible breathing, swallowing, choking, and salivation difficulties that may occur and how to avoid them.
The actual operation takes ten (10) minutes, but pre-op and recovery makes it longer. It was to be an "Outpatient" procedure, but she was kept 3 days to make sure she would be OK. It was a good thing, she couldn't eat for throwing up. It took about 5 days before she could eat again.
Once home, I gave her her medicines, and some protein drink through the tube. Now she does it herself when ever she wants to, or needs to.
She lost 11 pounds after the operation, but she's holding her weight now, and will hopefully gain a little.
Every step along the ALS path is a challenge, but the ultimate decisions for each PALS rest with them. All us CALS can do is our very best to "be there" regardless whether their decision makes us happy or not. We do hope though that they think of those who love them, and want them to FIGHT. I know - that's selfish. Pardon me for being human; caring, and wanting to "hold on" as well.
Another site you might want to visit is "LivingWithALS@yahoo.com".
Take Care,
Charlie, CALS to Wanda
You are right is is a case by case thing. So I will tell you in my fathers case he decided to get the feeding tube after much thought. He did it for us. He couldn't & didn't recover from surgery. I'm not telling you to do it, or not but it's hard to get answers from anyone about what to do next when it comes to ALS. I'm just saying in my fathers case he was already having trouble coughing & getting good deep breaths to the point he had to have the Bipap at night & breathing treatments. I think it depends on what stage someone is at to wheather or not they could tolerate a surgery, no matter how small it might seem to be for the average healthy person. I wish you both the best. Blessings
Hi,
Deciding to obtain a feeding tube is a big decision and one which must be chosen by each individual. However, that said, I would encourage you to speak with your husband and work with this issue until you come to peace with it. Perhaps he is not considering all the options available, perhaps you are not perceiving all he is feeling. I have worked with PALS as an RN. Two decided to obtain a feeding tube, one chose not to and another decided to obtain one but it was too late for her to safely participate in the surgery. What is important for you & your husband to be clear on is that there is a "window of opportunity" to get this short surgery. At a certain point it will no longer be possible due to decreased vital capacity regarding breathing and the increased risks involved with the surgery. What I would encourage you to discuss is this reality. Then, please know, just because the tube is there YOU DON'T have to use it. One of my clients chose only to receive her medications and fluids through her tube, never any food...although one beautiful night she decided she would love a small glass of wine with her partner and so had it through the tube! It becomes your ally, NOT something that determines how you want to work with your remaining time here on earth. Another issue to consider is the amazing mystery of life. One never knows what may happen. A birth, a death, something you cannot see now but may show up next month. Once the time to get the tube is passed...you lose the ability to decide to get it if something comes up in life. Spouses become ill and sometimes the person with ALS becomes the family support. You remain in control with a feeding tube and it is crucial to make sure everyone knows your wishes. You remain able to change your mind at any time as well to flow with the surprises of life. I think it is also important to realize you can replace that longer tube with what is called a LOW PROFILE GASTROSTOMY tube. A little extension that connects to a button. Then all you have is a flat button on your belly and no tube to mess with...come time for meds or water you simply take out the 12 or 24 inch extension tube snap it on, have your meal or whatever and snap it off...you don't have to struggle with a continual long connecting tube. May you & your family come to peace and understanding, the journey is a challenge beyond what any of us ever imagine...yet heros are born of such struggle.
Maya Ananda, RN
Wow Maya, Thank you for all of this information. I am a PALS a year and a half into dx, and this answered many questions that I didn't even have yet! I think that many CALS and PALS will benefit from this. Thank you very much. Jenny
Dear Grace, Thank you so much for your comments. My husband has always run 500 miles an hour, so having ALS was very hard for both of us, but we started taking one day at a time and keeping a good attitude most of the time. We were told that this was his decision and he told his Dr., he told me and our son what is decision was. He is in a power chair, talks on machine, he coughs a lot also. blessing to u
Thank you Maya, I am going to show your comments to my husband. This is a lot help. I am th only person he wants to care for him.
My husband, Harry, was diagnosed in Jan, 2000. At that time he had decided no feeding tube, no vent - he wanted nothing. As the years, went on he changed his mind. Two years ago this past May, he needed to make a decision regarding the tube and the trach (he had also said no to that). We were expecting our 6th grandchild in Aug. and knew it was a little girl. He looked at me and said I want to see her born. Two years ago Oct., he made the decision to go on a vent because he wanted to see our youngest children grow up. Since that time, he has seen another grand daughter borned last Dec. Just recently, he was in the hospital and had to make a decision on two major surgeries within 5 days of each other - his choice to do them so he could our youngest grand daughter walk. These are the goals that he has set for himself.
He uses a dynavox and has taught our grandson his color, shapes, numbers, etc. using his "talking machine" as the grandchildren call it.
I would say if you do have an ALS Center near you to contact them - ours had a movie that we both watched together regarding the feeding tube. Although Harry can only move two fingers on each hand he is still able to swallow a little so will have some juice, soup or ice cream when he wants it. I do all his feeings and give him his medication thru the tube. Our experience with the surgery for putting the tube in and afterwards has been excellent. We have never had a problem. Harry has actually gained weight since we put the tube in. Our Case Manager at the ALS Center did said to Harry - you can look at it this way - use the tube for your feedings, for your calories and save your energy and strength to swallow the good things, the pleasure foods that you like.
The decision to put a tube in or not is a hard one for the whole family. I wish and pray for the best for you and your family. After 7 years with this disease, one day at a time is the only way to do it.
FOR cjerica
Let me say bluntly, not to offend you or your husband. When the time comes I will get a feeding tube, 1/2 hr operation, easy and safe, gives the ability to keep weight on and hopefully live for the day theres a cure.
Live to be with friends & family, grandkids, children, Living life. 2 ensures a day is not enough nurtients.
Wishing you the Best. If your not a member of Patients Like Me,
http://www.patientslikeme.com I would strongly urge you both to join.
God Bless,
Lee
Hi there I am so sorry to read about your husband and yourself in dealing with this tormenting disease. I am the caregiver for my mother who has the disease also.
In our case, she was just diagnosed in April of this year. Within two months she quit talking, quite eating or drinking and in August became paralized. In June she was already having problems swallowing. At her point in life, being 73 years old, she didn't care about eating anyways so there was no question of tube or no tube. I will tell you that with the tube, she doesn't have to worry about the taste of food anymore which was right up her alley. We are on Hospice already and it is extremely hard to take sometime, but I promised her I would be there for her every single day and make sure she was comfortable. And she knows everything to this day what is being done for her. Tough but handling it.
BACK TO YOUR QUESTION ABOUT THE 2-3 ENSURES A DAY......At the hospital and the skilled nursing facility they give people of such this stuff called "Nectar" or thickened liquid. You can buy it at Walmart or Walgreens or Sams Club or your favorite pharmacy (sometimes it may have to be ordered) "Thickened Liquid". It comes in a powder and you mix it to the consistency you want it. If he is refusing the Ensure drinks, this may be your answer for a short while. It is supplied by the pound or 1/2 pound cans. Kinda pricey, but so is Ensure. In the Nursing Home, they also make a mix called "HONEY MILK". In this mixture they just take milk and load it with the powdery nectar and it is basically the last straw before the feeding tube because it is thicker than the recommended directions on the container of Nectar.
Hope this helps.
Hi, Afeeding tube can be a hard choice but a good one. Cale had lost 50 lbs before he got his. PALS need good nutririon to keep up their strengh to keep from getting skin break-downs and a lot of other problems. Just because he has a peg put in does not mean he has to use it always. If he can still eat he needs only to use it to boost his caloric content. PALS need more calories than ensure. Also if a tube is put in usually medicare pays for the formula which can be pretty expensive. No one need know the tube is there. Cale tucked the end of his in his pants pocket. The surgery is simple. the healing quick and the care and feeding simple. Some PALS can live many years and live quite happily. To survive you have to keep your strength up so your muscles dont deteriorate. Please join LIVING WITHALS@yahoo.com. Charlie gave you some good advice. The people ther are amazing. They were my lifeline. Also Patients like me . com will be a good help. Take all the help you can get! Hug, Ginny
I am not there yet; but reading this stream of responses has been very helpful to me; I certainly hope it has been helpful to you.
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