Feed back on Husbands wishes

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Michelle said:
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.
 
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
 
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
 
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
 
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
 
Michelle,

Please check your private messages.

Lillie:)
 
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
 
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?
 
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.
 
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 diagnoseded 8/2004)

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

donnah said:
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
 
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
 
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.
 
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
 
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