Trach /feeding tube decisions

[JenniferS]

Hi everyone,

I just found this group. My dad was diagnosed with ALS about 10 months ago and he is getting to the stage where he will have to start making decisions about getting a trach and a feeding tube.

I’d like to hear how other people made these decisions. How did you weigh pros and cons? Do many people decided not to get them?

Any thoughts on this would be appreciated

Thanks,
JenniferS

 

[taylorshannons]

Feeding tube and trach

Jennifer
it all depends on the quality of life your dad wants to have. I don't know his age or his personality,strenghs and weaknesses. But I can tell you yes it will prolong his length to stay but there are certain stages of this disease that really kick you in the butt...my dad chose not to do any of these things because he was a person that didn't want to delay the inevitable..he was a person that if he couldn't do for his self anymore he didn't want to be here in saying that.. I mean like if he couldn't wipe his own behind or was in a position to where he was bed ridden he didn't want to be here any longer then what he had to be... unfortunately his started in his legs and became paralyzed very quickly because he chose not to do any of the things that would prolong his life he was diagnosed in Dec 99 and died six months later in May of 2000.

Now in another case my aunt because everyone is different the way the disease starts how fast it moves (there are so many factors)... hers started in her throat she still had the ability to walk and do for herself she decided to take every measure to prolong her life..( stomach tubes, breathing machines etc.) but then when she became bed ridden she was stuck there in the bed for 5 years needing 24 hour nursing and no way of communicating to anyone if she had changed her mind so she stayed here for the long haul and to me it just looked pitiful and painful.

With my grandfather which is again another totally different situation he was hit in the lower and upper body basically at the same time the only thing he chose to do was the stomach tube. He lived one year with the disease 6 months where he could still do little things for himself then six months of being in the bed 24/7 again with no way of communicating except for his eyebrows 1 for yes 2 for no...

Since I have seen the disease and how it effects a person and I too have been diagnosed I am still in the decision making process. I don't want to prolong it but then I have twins that are 8 and I don't want to leave them too early. Is it selfish not to want to suffer? to the ones that want you to stay that is my difficult decision. I like my dad if I can't take care of my personal needs really don't want to prolong it..but then I have these two beautiful children that want me to stay for as long as I can along with my husband and my mother...

So basically its really up to your father in the way he wants to live the rest of his life there is no easy answer I wish there was.

Shannon

 

[John1]

Hi Shannon,

The sporadic form of this disease is bad enough but the familial version adds another dimension of horror when entire families are affected. I am sorry for you all. I'm responding because of one line in your post where one of the factors that was considered in whether to seek life prolonging measures was the loss of the ability of self hygiene or butt wiping. There is a very simple solution to this. The toilet top bidet enables anyone with slight finger control to do this. Alternatively someone else, even standing outside the bathroom door, could operate the bidet. There are several manufacturers, perhaps the best known is the Toto brand. I have one and recommend the Toto Jasmine. It can be found on eBay for about $550 most times. It washes with warm water, heats the seat and dries. It even has a male/female setting. Works great for anyone and I'd never go back to toilet paper even if my ALS were cured tomorrow. Here's a link to the Toto:
http://www.plumbingworld.com/bidetseat_toto.html
Note: Toto tries to fix prices and discourages its dealers from posting competitive pricing. You may see prices ranging from $700 to $1100 for this model. Ignore these dealers and go to eBay for much better pricing. As well, I recommend the "elongate" model, not the "round" one.

Here's an eBay link that expires in 5 days:
http://cgi.ebay.ca/Toto-Jasmine-S30...ryZ71284QQssPageNameZWDVWQQrdZ1QQcmdZViewItem

 

[MtPockets]

Jennifer,

It is a big decision and I have spent a lot of time thinking about this myself.

Each person has to figure this out for themselves. As for me I will not seek any life extending measures. I feel this is too great a burden to place on my family, much less the expense.

Shannon has seen the effects of the choices people make and is probably better qualified to advise you and us. I just wanted to share my personal opinion.

God Bless
Capt AL

 

[l2c]

My DH has decided to have a feeding tube unless his breathing becomes too bad to have the surgery. We do not feel that this is an extraordinary means - just a different way of getting food. The digestive system still works etc. My DH does not wish a ventilator but uses a bi-pap which is a non invasive "help".

Just letting you know some of our thoughts re: aides

 

[taylorshannons]

Hi John I just wanted to thank you for the information that you have shared..I will be looking into one..
but what happens when you are at the point where you can't make it the bathroom anymore? Your family I know always wants to help but there is a point where it hurts the person with the als to be moved. With my father all of his joints locked (like his wrists were bent down and no matter what you did they would not move) he was completely paralyzed he had lost all the spasticity in all his muscles and anything we tried to do (like to roll him from side to side to keep him from getting bed sores) caused him extreme pain.
I just thank god because when he got to this point he only lived for about two weeks.
It hurt me emotionally to see him in so much pain and know I could not do anything to ease it. Thats when we had hospice come in with the pain medicines he needed to keep him comfortable until he passed on.
I Loved taking care of my dad it was very special to me. I spent everyday with him I cleaned him and shaved him everyday when he could no longer do for himself
..he used to laugh at me when I shaved him because I would move my cheeks like I was shaving myself...
We cried together and shared moments together that I will always treasure. I just hope that everyone that has been diagnosed with als has family that is willing to keep them at home its such a special time in a persons life to be with your family. When it gets to the hard part get hospice invloved to help to keep them comfortable. At least they get to be at home with thier families in a loving place where they need to be...

Shannon

 

[CindyM]

Hi Jennifer. I don't have anything to add to the discussion except to welcome you to the forum. I am glad you found us and hope we will be able to help. Cindy

 

[joelc]

I have battled with the decision to vent or not as well. After much consideration, I have decided to do it when it becomes necessary. I have always been an extremely independent person and said I would not do this, but it is easy to make this statement when you are not staring death in the face. I lost a lot of ground during a 4 month period and my breathing went from 100% to 30% during this time. Since I am still mobile my decision changed.

I always thought I would be in a wheelchair and totally dependent on someone else when my breathing got this bad so it seemed logical to decline getting a vent - but that is not what happened. I am not ready to die yet and my family wants me around a bit longer.......so I agreed to vent. Thankfully my breathing improved enough I can get by with a bipap.

I put my wife in my place and thought about whether I would feel burdened by having to care for her - NO WAY....I WANT HER AROUND FOR AS LONG AS POSSIBLE! I would view her care as a privilege, not burden. Life would be so empty without her......I would insist she vent. There is a lot of incorrect information concerning a vent - it is NOT that hard! Yes, you need 24 hour attendance, but once you get used to the routine things are manageable.
Having said that, I have to tell you we moved to an area where we could get the medical support we need for this decision - if we had stayed I would be dead already. Medical differs significantly from area, to area.
Medical people try to talk you out of it because they don't want the liability.......but I have corresponded with a good number of PALS who are vented and they have good quality of life.
With modern technology we can still communicate so we don't have to feel locked-in. I have a lot to contribute to my family and have unborn grandchildren who I want to influence - I believe they will be better people because I chose to live and be a part of their lives. I am going to try it and see if I can do it!

Please don't discount this as an option before you are confronted with the choice of either taking a vent, or dieing - none of us really knows what we will decide until that time!

God Bless us all as these tough decisions have to be made.

 

[quadbliss]

Hi Jennifer,

As you can see, opinions on this subject vary widely. Personally, I chose the feeding tube and trach/vent route, and I am so glad I did. I have LIVED more since these procedures were done in 2004, than in my previous 40 years. ALS forced me to face my own mortality and ask myself why we are here. In my search I have found the answer to this question and many more. ALS has been a catalist for personal growth for me. :-D

Mike

 

[JenniferS]

Thanks so much for everybody's input. I really appretieate you sharing your experances on this.

Jennifer

 

[John1]

Hi Shannon,

I'm afraid I can't help you much with that question. I can still get around ok with a scooter. You might start a thread on it and get some answers from people who have had to deal with that stage. Until you posted on it concerning your dad, I hadn't realized there could be so much pain involved in being moved. I know there are various types of lifts and even tracked slings running from bed to bathroom that some people use.

John