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]

Feedback On Husband's Wishes

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]

abide by his wishes

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]

Feeding Tube

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]

same...

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]

Feedback on husband's wishes...

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]

Feeding tube and vent

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