Advanced Directives

[jennifer79]

My dad was just diagnosed in February and we are trying to get everything in order. He has already signed a DNR. Today he told me that he didn't think he wanted a feeding tube or Trach. If anyone has any advice on this it would be of great help. Of course i want to do everything i can just to have him one more day but i know i have to respect his decisions. I have heard that ALS patients can still live for a while longer with those things. He said he just doesn't want to lay and bed with those things and have people stare at him. Please Help me understand.

 

[vickim]

You are being very brave to accept his wishes. Try not to dwell on the end, make the most of what you have now. Make memories that will carry you through the hard times. Ask him if there are things he would like to do or tell him of the things you might like to do together with him. Laugh, love, and live in the moment. Stay strong. Sending you big warm hugs. We are here for you.

 

[Nighthawk]

I think it's up to him to decide what he wants while he can still make decisions by himself.

Although, many, many, many PALS go for the PEG-tube and...very few go for the Thracheostomy, I still think these are very personal choices and, well...if he doesn't want either one, then you would need to respect his decisions and try to make the most of what you have now.

Kind regards,



NH

 

[pearshoot]

does other members of family or friends stare at him now? if not why would they when laying in bed when reaching the point of being unable to speak, make the coversation that can be answered yes or no by blinking eyes. this is what i do in waiting area of als clinic when meeting someone who cann't speak. short conversations but shows people still care about you. .

 

[jacquie]

My thoughts are that he hasn't had time to grasp this as it is so new. My first thoughts upon diagnosis were the same. I have since found that the thought of a PEG tube isn't as horrifying but rather makes sense. I still wouldn't get a trach. I think you need time to realize you still have a lot of living and loving to do, before you die, and that you are LIVING with ALS, not dying of it. Encourage him to come on to the forums and find encouragement there.

 

[KissJ]

The feeding tube has helped my husband a great deal. He was dropping weight and loosing his interest in eating. He is now enjoying eating and has two tube feeds each day. This has helped to put back on weight. That is a plus for a person with ALS. The docs tell us that it is better to have weight as it helps to fight the ALS Monster!
My husband does not want a Trach!

 

[Nighthawk]

I would dare say that, perhaps 5-10% of all PALS would go the Tracheostomy route.
It's costly for CALS and PALS alike to take care of somebody with a Trach.
But, it's up to anybody who really wants it.

 

[Atsugi]

Jennifer, I encourage you to accept his wishes, whatever they are.
My Kristine refused all tubes except a catheter, and had a very calm, dignified end to her life.
She was in total control as much as possible throughout the disease, all the way to the final decisions about the amount of morphine to be administered.

 

[hjlindley]

I know this is hard to accept as a child of a parent you love dearly, but as an ALS patient those of my directives as well. I have lived a good and full life, very strong and very independent until this disease took both of those. I was a passionate an award-winning cook who could no longer handle a chef's knife. I was exceptionally active and now in a power chair. Yes some of us can live longer with invasive procedures. But it sure as heck won't be me! You are a good and honorable child for following your father's wishes. Know that it will not be a painful passing. And then he will feel he has some control left his life. Sorry you have to be here at all.
Hollister

 

[daigs]

I'm a lot younger than your dad but I understand where he is coming from. It is very scary for your dad because last thing he wants to think about is leaving you. I have agreed to a feeding tube because I can still eat with it. Trach I'm on the fence. if I'm in a wheelchair and can still interact with my family then I will do it. But if I am stuck in a bed and can't do anything and all I do is sleep and cant interact then I don't want my family to remember me like that. It is a very difficult decision and it is something that your dad needs to decide. Right now it is my legs and arms that are the issues, they don't want to do things for me anymore. So a wheelchair is the next thing for me. I was diagnosed in November, it really takes time to process it all. Give him time to really think about it and comprehend it all. A positive attitude goes a long long way! Have your dad read some of the posts on here. It might help. Good luck and stay positive!

 

[JamieL]

My mom was also diagnosed in February 2013. Speech, swallowing, weight loss, and fatigue are her only issues right now. She has always been a "prepare for the future" type and actually gave me a folder years ago with the words "death stuff" written on it. I mean she planned it ALL, before even having symptoms or need to do so. At the time I thought it was morbid, but it is really best to line this stuff up before you need to and while you are well. Right now my dad is obsessed with talking about funeral prep and whatnot. I got angry at first because she isn't dead! She is walking and talking and breathing so let's not plan a funeral. But I realized it is helpful to HIM to know we have all discussed it. Just listening to him and reassuring him that we were on board with the plan helped him to relax. So this weekend we had a difficult discussion about Mom's specifics with ALS. She is agreeing to the PEG-tube. She didn't want it, but after showing her pictures of it and all the info, it wasn't what she thought it was so she is ok with that. We talked about wheelchairs, walkers, breathing machines, etc. She for sure does not want a Trach.

What's funny is that during this I had an epiphany. I said "Mom, you are still YOU and will still BE you. Even if you can't move or speak. So what do YOU want?" What we realized is she's a homebody. She likes to watch TV and read. She always has. So she can enjoy her life in a much more incapacitated state than someone who was very active. That's my opinion anyway. So it's a very personal choice and I think we have to respect the individuality, the dignity and the wishes of the PALS. I know this is so hard. Lots of prayers for you and yours.

Jamie

 

[jellis86]

I was diagnosed in February as well...issues being speech, slight swallowing problems with thin liquids, and very slight breathing issues when lying on my back.
So far I have gotten a Bipap for help sleeping, mild apnea. I will be getting a feeding tube between now and June, maybe I won't need it yet but I want to get it before I have problems which might keep me from getting one.

As far as getting a trach when needed, my wife is all for that but I have to say I'm not.
My wife has worked in nursing care facilities almost her whole adult life and is fully qualified to care for me if I were to go the trach route. But in reality, it takes 24/7 care and I'm just not sure I would want that for her, others involved, or myself.

I love to travel and we will be doing that this summer. I also enjoy reading & love movies. I'm very happy being a home body. So who knows what I will want when the day arrives!

But we are getting everything ready for either decision.

 

[notme]

I'd be sure he understands that starvation is not a pleasant way to pass. If/When he gets to the point he can not safely eat--that can literally happen years before it gets very bad in other areas.

A PEG can be put in and NOT used--but there comes a point when it's not able to be done. If he understands that -- and still doesn't want one, then all you can do is accept his wishes.

If I'm able to still have a life and need a PEG for sustenance, I'm going to want it-- not so much the trache. But a bi-pap helps a lot with breathing. He could be years before it would even be a consideration at all.

 

[bob_s]

Sounds like your dad is of sound mind, so at the end of the day, it should be his decision. And it's good that he is planning. I have a DNR and advance directive including no trach. I was against a PEG at first but, however, I was persuaded to consider a PEG tube if needed early in my progression while I was still active. Is your dad open to any discussion? If he has bulbar onset with e.g., trouble swallowing, a PEG can give him quality of life.

Bob

 

[Nighthawk]

As Notme pointed out, starvation must be a horrible way to pass away.
I hope he reconsiders the option of the PEG tube for feeding.
I haven't had the procedure myself but I'm open to get it when I feel I will be needing it.

Tracheostomy, on the other hand, is an option I wouldn't want because of the burden it puts on caregivers and PALS alike.


NH