Feed back on Husbands wishes

[donnah]

My husband has informed us that he wants no feeding tube or vent. He is a heart transplant paient and has suffered with being sick for the past 6 years the last 2 with his new heart and then this happned. It is his opinion that he dose not want to die fom ALS he is to proud. This is the first time I used this group forum. Thanks for any input anyone can send my way

[paula B]

Hi,
i also have the same wishes,,no feeding tube or vent. So i say fllow through with his wishes.

Paula

[paula B]

sorry follow through

[ljtaylor]

My husband has informed us that he wants no feeding tube or vent. He is a heart transplant paient and has suffered with being sick for the past 6 years the last 2 with his new heart and then this happned. It is his opinion that he dose not want to die fom ALS he is to proud. This is the first time I used this group forum. Thanks for any input anyone can send my way

HI DONNAH,

I AM FAIRLY NEW TO THIS FORUM ALSO. I HAVE HAD ALS SINCE 2002 AND WAS DIAGNOSED IN 2003. I WAS VERY SCARED TO GET A FEEDING TUBE BUT I FINALLY DID ALMOST A YEAR AGO. IT IS GREAT THAT I DID. I HAD LOST SO MUCH WEIGHT BECAUSE IT WAS HARD TO SWALLOW. I NOW TAKE MY NUTRITION (ENSURE) AND MEDICINE CRUSHED UP BY THE FEEDING TUBE. MY HUSBAND DOES THIS FOR ME. WE DO IT THREE TIMES A DAY CALLED BOLUS FEEDINGS. I EAT SOFT FOODS ABOUT TWO TIMES DAILY.
I AM STRONGERAND LOOK BETTER SINCE DOING IT. I PROBABLY WOULD NOT DO THE VENT. I HAVE THOUGHT QUITE A BIT ABOUT A TRACHE. IF ANYONE HAS DONE IT PLEASE LET ME KNOW. YOU PROBABLY NEED TO SUPPORT YOUR HUSBAND'S WISHES. HE NEEDS TO KNOW A TUBE ISN'T THAT BAD.

GOOD LUCK,
LOIS

[lunarruna]

Donna,
It is of course important to support our loved ones wishes. Just be sure that he making an informed decision about the feeding tube, and understands exactly what it is and how it works, etc. My husband did not want a tube for a long time, but as he learned about them he eventually decided to go with it. He will not go on a vent. You can search on 'feeding tube' in this forum and learn more about them. If he has all the facts and still doesnt want one, then we all respect that for sure--everyone's journey is unique!
Good Luck...Beth

[Ontario caregiver]

My husband has wrote up a directive at his local hospital, no cpr,no vent, no feeding tube, it is his wishes told to me and others, so I will honour his wishes. I do feel you pick life first, so when the time comes and he can still speak I'm not sure if he will say the same. My husband depends on another person for all aspects of life now, so there is QUALITY and quantity of life. It is his call and as I said I will fullfill his wishes.

He has choked a few times, and I have been able to dislodge it, so trust me I have been tested with his wishes a few times, but love will get you through anything, with his wishes spoken to me and others I hope I will feel no guilt if he chokes at the end but at his last visit with Dr. Strong in London he expained most Als patients like Gary will probably just fall asleep and not wake up, so I hope this is his way of leaving this earth and going to a pleasant place where ALS does not exsist.

Sorry, not on this sight often to comment but you do release alot of thought here that are deep and difficult at times, but that is where we can heal and see others in the same boat.

I wish "all" the best, what ever the best is.

Caregiver from Ontario

[Al]

We don't all agree what is right or wrong here but we do agree it is individual choice. We are dealing with some deep and heartfelt issues here and while we don't very often get into the death issue it is something that must be looked at at some time. Most of us that have confronted the issue know that roughly 90% of us will die in our sleep. It makes it scary to go to sleep some nights and a little Ativan helps if you need it. It's not for everyone but some need it or other meds to get by. If you are a realist you know that sooner or later we all go somewhere whether it be to heaven or wherever you believe in or don't believe in. You might get hit by a bus that runs you over in your wheelchair on the sidewalk. I think in our cases we are or should be more prepared than the average person.
AL.

[dana]

I agree with what everyone is saying here. Do what your husband wants. He may change his mind, and if he does you do as he wishes. Be thankful that he has already told you what he wants. My dad did not tell us, and we had to make some decisions for him. (his cognitive thinking is very poor due to the disease) The decisions we had to make for him were some of the toughest decisions to make. My dad started to go into respitory failure, and the doctors needed to know if he would want a vent/trach. Dad never told us, so we went ahead and had the vent/trach put in. Dad is still with us now, which I am thankful for. His life is much, much more different now, but he has still gotten to experience some great things. Like I said before, be thankful your husband has told you his wishes. This way you will never be in a situation where you have to make some life and death choices. Your husband knows what is best for him. Just enjoy the life he still has now.
Dana

[ChrissyWho]

My husband felt the same way about a feeding tube but has since changed his mind. Although you have to abide by your husbands wishes you should revisit the subject in the future because he may also change his mind. Good luck to you.

[kwachtler]

Donnah,

My husband told me right from the start that he did not want a feeding tube nor to go on the ventilator. I agreed with him and we took care of all the necessary legal paperwork. 6 years later as he started choking on water and swallowing his pills, he changed his mind. One night he told me he wanted a feeding tube and we went into the hospital the next week to have it placed. Intially, we both agreeded that we would not pursue the feeding tube but it was the best decision we could have made for his quality of life (however long that may be). Not only is it easier for him to take his meds but feeding him now is so much quicker and easier. Not to mention that he is not choking all the time. I look back now and know that we made the right decision. At first, he was afraid to use it because this was another visual sign of his decline. Now, it is no big deal to him. He is comfortable and his nutritional needs are being met.

My heart goes out to the both of you. This has not been an easy journey.

God Bless,
Karen

[Countrycouple]

Mom told me the same thing when she was diagnosed with ALS.. No feeding tube.. nor vent.. We were at rehab about 2 weeks ago.. the topic came up in rehab about the tube.. Because the Lady said, if she wanted one, they would have to do it now.. before she worsens.. They were telling her thats it's easier to make her comfortable with a feeding tube when it comes to the time.. I dunno if this is true.. because i losr a brother in law almost a year ago now.. from cancer.. they uesed intervenous to keep him comfortable.. Mom has it in her will of no feeding tube.. But rehab told her she could change her will.. but we would have to say it's just for drugs.. But those same drugs they can do through intervenous..and they did for brother in law?
Mike

[gapeach]

Hi, Donnah,
What is the difference between a trache and ventilator? Is this 2 different things? We are new to this. My husband had a peg put in Tuesday. We tried water in it last night for the first time. It sure seemed to go down awfully slow or else we don't know what we are doing!!
gapeach

[Al]

Hi peach. The trach is the part that goes into the neck. The tubing etc. The vent is the actual machine that pushes the air into the trach and then into the lungs. The tube takes practice from what I hear and it's not like flushing the toilet. It doesn't go whoosh and the food is gone. It does take time. AL.

[Pollyanna]

I agree with everyone else...it's most important to honor his wishes. My husband, recently diagnosed, lost his brother to ALS about 6 months ago. The brother did have a feeding tube, and ultimately a trach/vent. When we would visit, it was difficult to see him with the feeding tube, but he seemed ok with it. The vent was even tougher to watch, and the hardest part was when it finally came down to it, the decision had to be made to remove it, and it was the hardest thing I've ever experienced. My husband said at that time, not knowing he would have the same diagnosis in just a few months, that he would never go on a vent. Now that we have the DX, he still feels the same way...and I do too. No vent, but possibly a feeding tube. It isn't as invasive, but of course, the disease hadn't progressed as far when he just had the feeding tube. Like many of you said, he may change his mind, but whatever he wants, that is what we will do...it is his life and his choice of how to handle this insidious disease. This is not easy to talk about, but I know we must all face the realities, and it's best to be prepared for them.

Donnah, I hope these friends have helped...we are all in this together, and somehow, that does bring some comfort.

God bless,

Pollyanna

[Michelle]

Hello,
I'm new to this forum. My husband died in February after living with ALS for three years. I've been reading your messages about feeding tubes and vents and the patient's wishes, and that's what is most important. The person must decide for themselves as to what they want. And they should know that they can change their mind at any time and any number of times.
My husband lost so much weight because he was unable to swallow, so he got the feeding tube. It was a minor procedure, about 2 hrs in the clinic and enabled him to get the nutrition and meds he needed. I warmed his Ensure in the microwave before feeding him and he liked it. I just figured everyone likes a hot meal even if it's through a feeding tube!
In October 2004 he went into respiratory failure, his diaphram just quit. He had said he wanted to go on the vent and so that's what we did. He lived another 1 1/2 yrs. He was at home the entire time. Now about the vents. . . they are small and portable, about the size of a laptop computer. They come with a backpack that can be hung on the back of a powerchair, 8 hour batteries, and will require the caregiver to learn how to monitor the readouts. With this setup the patient can be very mobile. We took some trips, went fishing, went to the movies, etc. Basically anywhere we wanted to go. The patient will have a trach and the vent connects to it. The patient must have a 24 hr caregiver/s to be on a vent. They cannot be left alone ever! The cargiver will have to learn basic trach care, cleaning, suctioning, monitoring, etc.
I was not a medical person, but while my husband was still in the hospital after being put on the vent, I insisted they let me do all the procedures so I would be comfortable when we went home. So I learned.
I was told that it takes a very dedicated, special, caregiver to take this on, and that is probably true. I hired an LVN to work with me as a caregiver and trained her in trach care and the vent. It may not be for everbody, but it is possible, and it can extend life.
This message is too long, but the last thing I would like to pass along is that it's important to live your live as normal as possible. With ALS it will be just a 'new normal' every day. Don't get house bound, find a way to get out and do all the things you enjoy. We went to concerts, the mall, church, etc. If we needed to suction, we discretely suctioned. Sometimes people were a little curious, and we would tell them about ALS. I took my husband into the women's restrooms in his powerchair, just opened the door and told anyone in there that he was coming in. We never had an objection from any woman, usually they were offering assistance. So don't let this disease stop you from living. Don't let it win. Use whatever means you have available to keep living your life.
God bless all of you, keep praying for a cure!
Michelle

[Lillie]

Hello,
I'm new to this forum. My husband died in February after living with ALS for three years. I've been reading your messages about feeding tubes and vents and the patient's wishes, and that's what is most important. The person must decide for themselves as to what they want. And they should know that they can change their mind at any time and any number of times.
My husband lost so much weight because he was unable to swallow, so he got the feeding tube. It was a minor procedure, about 2 hrs in the clinic and enabled him to get the nutrition and meds he needed. I warmed his Ensure in the microwave before feeding him and he liked it. I just figured everyone likes a hot meal even if it's through a feeding tube!
In October 2004 he went into respiratory failure, his diaphram just quit. He had said he wanted to go on the vent and so that's what we did. He lived another 1 1/2 yrs. He was at home the entire time. Now about the vents. . . they are small and portable, about the size of a laptop computer. They come with a backpack that can be hung on the back of a powerchair, 8 hour batteries, and will require the caregiver to learn how to monitor the readouts. With this setup the patient can be very mobile. We took some trips, went fishing, went to the movies, etc. Basically anywhere we wanted to go. The patient will have a trach and the vent connects to it. The patient must have a 24 hr caregiver/s to be on a vent. They cannot be left alone ever! The cargiver will have to learn basic trach care, cleaning, suctioning, monitoring, etc.
I was not a medical person, but while my husband was still in the hospital after being put on the vent, I insisted they let me do all the procedures so I would be comfortable when we went home. So I learned.
I was told that it takes a very dedicated, special, caregiver to take this on, and that is probably true. I hired an LVN to work with me as a caregiver and trained her in trach care and the vent. It may not be for everbody, but it is possible, and it can extend life.
This message is too long, but the last thing I would like to pass along is that it's important to live your live as normal as possible. With ALS it will be just a 'new normal' every day. Don't get house bound, find a way to get out and do all the things you enjoy. We went to concerts, the mall, church, etc. If we needed to suction, we discretely suctioned. Sometimes people were a little curious, and we would tell them about ALS. I took my husband into the women's restrooms in his powerchair, just opened the door and told anyone in there that he was coming in. We never had an objection from any woman, usually they were offering assistance. So don't let this disease stop you from living. Don't let it win. Use whatever means you have available to keep living your life.
God bless all of you, keep praying for a cure!
Michelle


Hi Michelle, I have a question I hope you don't mind me asking, I was under the impression that that when a pals went on a vent that they could live indefinately and I see that your husband only lived a year and a half on the vent and that scares me because my husband just went on a vent. I hope I'm not bringing up bad memories by asking you this but what happened to your husband, I've heard some people go off the vents because they just give up and are tired of living that way or that some die of infections but it seems like alot of people live for a very long time with a vent and I was just wondering about what happened to your dear husband and if it's something I can prevent happening in my husband to keep him here with me and our kids. God bless and thank you.

[donnah]

Hello everybody. just an update on my husband . We had an accident a few weeks ago the cable on our lift broke and my husband has been hopitalized since. The truma has caused his swollowing to become more diffucult and talking is very weak, he has lost so much of the little bit of movement he had. He decided two days ago to have the feeding tube placed in in stomach after all. He said if he chooses to use it he will if not he wont he will see how it goes. He is still refusing a vent that will not change he said.
He will be coming home with hospice soon so please pray for him. If anybody lives in my area Barnegat, New Jersey and has any information on additional care for him or volunteers in my area please contact me.. I scared and need help. He wont let me quit my job he said I need to go on when he is not here "You need to work to carry on" Any help, I would be gratefull

Donna

[Michelle]

Lillie,
I don't mind you asking anything at all if I can be of any help. My husband went into the hospital after having his trach changed out (he used the disposable inner cannulas and the trach itself required changing frequently) and it began to leak air. While in the hospital, he began to develop an infection and began to have pain. At this time the disease had progressed to the point that he could only move his lower arms and hands and his head. My husband had been a very outgoing man, never met a stranger, was always busy, busy, busy! I never thought he would opt for a vent or tolerate it. But he did and rarely complained. He knew that it would be his decision as to when to come off the vent, that nobody would make that decision for him. When he went into the hospital and started having pain, he was really weak, tired, and really had had enough. After three days, I asked him if it was time, I knew he didn't want to leave me, but he looked at me and indicated that it was. With the doctor's help, I removed him from the vent that evening. It was the hardest thing I've ever done, but I could not let anyone else do that for him.
As you know, even with the vent, the disease keeps progressing. By going on the vent you take away the option of dying naturally, and the patient must decide when the time is right. That's the hard part. People can and do live for a long time on the vent. The will to live is strong and people are amazingly adaptable. Your husband will know when it's time. Try to laugh a little every day, make him laugh, enjoy your kids!
Michelle

[Teej]

Thank you Michelle, and everyone....my husband has ALS, and has also said he does not want the vent, but he will accept a feeding tube, when the time comes. Right now he has a hearty appetite and eats fairly well...He chokes mainly on water and sometimes his pills. He has lost 60 lbs., and we were ready to do the feeding tube, but he has recently started gaining againg...I love what Michelle said about fighting....living life. My husband sees no limitations..he was a vibrant creative person before, and even though he is wheelchair bound, on a bi-pap, and extremely weakened, he continues to be an active father for our four daughters, and teaches piano and writes music...Live life, make some preparations for tomorrow, but don't worry about...View each day as the gift it is...I will keep all of you in my prayers....Teej

[COlisa]

Michelle,
Thank you so much for posting the info on this thread. It must be very painful for you, but you have helped provide a very important set of insights into the "unknown" that so many of us face in the future.

Your comments about getting out, going to the movies, etc. plus the practical details like how you handled the restroom situation are so appreciated! It seems that sometimes I can only think of these things in an abstract way, and cannot figure out the practical details because I just don't know how to get there. It all just seems scary and impossible to deal with, but you have proven that people can and do deal with it.

Thank You!
Lisa

[Lillie]

Michelle,

Please check your private messages.

Lillie:)

[gifogif]

Hi and welcome donnah. I have completed a living will and advance directives that specify exactly what my wishes are. In my case I will not have a trach. Because of the documents that I had done,in my wife's presence, I feel that it removes any decision making on her part and also relieves her of any or some of the guilt she may feel. I know this may seem to be a cold way to go but I don't want to be a bigger burden than necessary. That's why I enjoy each and every day and do the things that are important to us both. Keep the faith and stay POSITIVE

[donnah]

Has anyone ever had hopice help and do they really help. Dose anyone still work when there loved one is wheelchair bound. They say my husband needs full time care I dont think he wants it. Im'm feeling so lost and overwhelmed. I want him happy.. he wants to come home they want him to go to a rehab, he thinks why bother nothing will help him regain his ablility to ambulate, the doctors say he can not stay home alone, The big issue is going to the bathroom by himself. Any ideals from any one Someone help me figure this out please.. any ideals would be greatly appreciated

Donna:-? :(

Grandpa All you seem to have so together how do you do it?

[Al]

Hi donnah. Maybe I'm just lucky. Running the forum here takes my mind off my problems. Trying to give help and advice is therapeutic. As for the Rehab Hospital for your husband, the one I spent a week in when being set up for my Bipap wasn't for rehab for ALS patients. It had ALS patients there but only because they need special care like a paraplegic or a quadriplegic. The rooms are designed for people with no mobility and the people are trained to look after them 24/7. I know it is a difficult situation and a heart wrenching one to put someone in institutional care but you are not abandoning them if you visit and it is possible to make it pretty homey in some of them.
I do know a person wheelchair bound that stays home and has a caregiver come at lunch and his kids come home right after school. He wears depends while they are away and tries to time his movements so that someone is there to help him with toileting. I'm not sure which way you should go. Do some searching on the forum here for topics like home care, toileting etc and it might give you a bit more help in making a decision. Hope this helps and let us know how you make out. AL.

[lunarruna]

Hi Donna...For a time i worked while my husband was wheelchair bound here in the house. He didnt think I needed to be here and didnt want me here...I would come home at lunch and check him. We had rules about what he could do while I was gone--luckily he never got into trouble. I could email him and he could email back even though he couldnt answer the phone. Often I was worried while at work and wondering if it was stupid......you can get emergency call set ups whereby he would have a pager type thing on him to trigger a call either to you or 911, very slick and designed just for this purpose....I forget the name.....but you can look into. We were looking into it but by then he was getting bad enough that I went on leave to take care of him full-time.
Regarding toilet--my husband wore a condom catherer attached to a leg bag to collect urine--they are nice and he stills wears every day now. BMs would be a problem of course.
Everyones situation is different----it may take awhile to figure out what is best for you guys......and it changes so fast too--argh!
I also had neighbors who wanted to check in with him a few times a day but he wouldnt let them! Made me so mad!!
Now we have a great Home Health Service (medicare) that comes in and helps with aides, nurses, and PT.....they will transition to hospice when we need it.
Good Luck with this all...Beth (CALS to husband Shannon dxed 8/2004)

PS Hospice care is generally awesome here in our area, and many others I know....check in to it for sure!

[paula B]

Hello everybody. just an update on my husband . We had an accident a few weeks ago the cable on our lift broke and my husband has been hopitalized since. The truma has caused his swollowing to become more diffucult and talking is very weak, he has lost so much of the little bit of movement he had. He decided two days ago to have the feeding tube placed in in stomach after all. He said if he chooses to use it he will if not he wont he will see how it goes. He is still refusing a vent that will not change he said.
He will be coming home with hospice soon so please pray for him. If anybody lives in my area Barnegat, New Jersey and has any information on additional care for him or volunteers in my area please contact me.. I scared and need help. He wont let me quit my job he said I need to go on when he is not here "You need to work to carry on" Any help, I would be gratefull

Donna
I cant help you with care but have you thought of taking a family leave from work?
I wish i could help you more. Good luck and just know we are all here for you.

PaulaB

[dana]

Michelle,
Your husband sounds like he was an amazing man who endured a lot. I know that the vent route is a tough one. My dad has had his vent since Feb 06, and I wonder how long he will live with it. I know of one person who lived for 14 years with a vent and another who lived for 7 years. I don't think dad will ever choose to have it removed, like your husband did, just because his thinking is so poor now from the disease. They are finding more and more that people who have bulbar symptoms are more prone to dementia of some sort too. Dad definitely falls in that category. God knows when dad's time to go is, but it is very hard to see him like this at times. I liked what you said about still going out and doing stuff. We took my dad to the coast last month, and we visit his coffee house about once a month too. He sometimes goes over to my brothers house to watch movies. The most important thing is not to become home bound, like you said. I think the is especially important for the caregiver. I know that if my mom does not get out of the house at least once a week, it definitely has an effect on her. I am thankful that my dad still gets to be a part of our family and see his children and grandchildren. His grandkids are the light in his life and with two more on the way, we all have some things to look forward to. This is a very difficult process, but you somehow get through it. Thanks for sharing your story. Can I also ask you a tough question...when you removed the vent, did your husband suffer in any way gasping for air? I am scared this would happen if dad ever wanted us to remove the vent. Did he receive medication to help? If these questions are too personal, I apologize and don't feel like you need to answer them.
Dana

[Al]

Hi Dana. I addressed this issue with a Dr. one day and he said that if the time came for a decision like that came, morphine would be prescribed and it would be a matter of just slowly going to sleep. I thought I would answer this in case it was difficult for Paula but it is a good question and I am sure others have wondered as well. As I have said before. You are not alone. AL.

[Jane]

Hello Dana: My sister did not have a vent but was on Bi Pap 24/7. I too was very worried about "the end".
When the bi pap was not longer enough to keep her going we used a med called Versed, it calmed her and made everything easier for her over the last 3 days. There was NO gasping, restlessness. She was relaxed, peaceful and just gently went to sleep. I should also tell you she was not unconsious, we were able to rouse her until the end.
I hope this info will give you a little peace of mind.
take care
Jane