Loved Ones Refusing Treatment

[Bujy]

Have any of your loved ones refused treatment? What have their reasons been?

My MIL has brought up this topic and I'm not sure what to say. I have said that it's her decision whatever she wants to do. I will support her decisions and will do my best to make sure that her needs and desires are met.

It's super difficult to imagine this, but it's bound to come up. I told her that if it makes her feel better, we can talk about it and put together a plan. I told her that whatever she decides now, she can always change her mind later.

Do you guys have any input?

Thanks,
Bujy

 

[CindyM]

What treatment is she refusing?

I've heard PALS say they won't bother with ruitek if there is a big cost or side effects associated with it unless it can be proven that it will prolong life for more than a few months. Others debate the use of ventilators or peg tubes but then we have folks like Quadbliss and JoelC who declare their good quality of life and thus present another side to the issue.

Unfortunately there is not much by way of "treatment" right now. But she might want to weigh the pros and cons of anything that make her more comfortable. JMO...Cindy

 

[Marjorie R. Wilcox]

I wouldn't call what Rick is doing as refusing treatment, although he doesn't take any meds. His neurologist and pulmonary specialist haven't even asked him what he would like to do nor even proposed anything beyond the bipap. He does have a wheelchair, four-pronged cane and a walker. We have been offered any and all mechanical assistance that is available anytime we request anything.

We have researched the meds. and what they can do or might do... and the side effects. Rick doesn't want to add diahrea or constipation to his list of symptoms, or chance the danger for his internal organs like his liver and heart, and he doesn't want to take muscle relaxers when his muscles are losing strength.

The specialists are SO approving and glad that we are doing as we are, I think because so many people panic and demand a cure..... expecting the doctors to DO SOMETHING!

Rick has eliminated the four poisons from his diet ( high salt, sugar, white flour, and pasta) and has therefore eliminated the need for blood pressure meds, his original high colesterol (sp) levels, and some overweight. He is 61 and healed a badly injured leg.. almost amputated in an explosion. The diet was started to control the need for insulin in his Type II diabetes. You should see his blood count, with no vitamin supplements.

I don't mean to brag. I am trying to share our fortune in finding a goldmine of ideas and thoughts. We would have all of you finding success in keeping ALS on the fringes of your life instead of the alligators a few of us choose to wrestle.

When you are over say, 50... anything can happen to you in a day. If it weren't ALS it would likely be something else. We all make choices for ourselves for what we consider to be the right way to go. Don't get me wrong, I honor your choices too.

Boy, do we wish and pray that there could be a treatment to curb this disease! Try not to spend your hard-earned money on a plan that doesn't make a difference.

 

[Bujy]

No treatment has been refused yet. I'm just remembering a friend who's Dad had something similar and refused all treatment. Wouldn't have anything to help breathe, wouldn't have anything to help swallow. This was very hard on the family and on him. He changed his mind later on and it was too late. Not sure why, but he couldn't have anything done because he was too sick.

I probably shouldn't worry about non-issues. Because now, I've just got a bunch of What if's going through my brain. Driving myself crazy!

We still have lots of laughter and fun times. Not sure why I'm acting like this. But rest assured, I keep it to myself.

I try and tell my MIL that she's living with the disease right now and let's keep it that way. Trying to keep morale up and fun things continuing.

It's hard.. but I can't imagine how hard it is on her.

 

[mndireland]

My mum refused everything at the start. Didnt want to know to be honest. To this day she never had the peg or the trach and that was her decision and we've got beyond them. I know the choking on fluids and food is hard, but to be honest, we are so used to them now there's no even panic when they happen, unless its a biggy!
She hated bi pap at first and we didnt force it on her, tried it for a half hour or hours somedays, then a few months later she got sick and was admitted to hospital. The nurses there had her use the bi pap more and she did, and she relaxed a lot more on it. After that, she started asking for it to be put on, She was so uncomfortable and unable to breathe, she felt better with it on , and felt the difference for herself.
Basically what Im saying is that, even though she refused everything in the start, including handrails around the house, wheelchair etc she now is glad of them.
Your mil may be the same, its hard if its so soon after diagnosed to make the changes, let them happen gradually and at her pace.

 

[Carolan]

After a couple of months of diarrhea, my mother declared that she would not accept any more Jevity or Pulmonare feedings. I started making her food myself (check my past posts to find my basic formula), and she has been content since then. She agrees to all the other medications, and her overall comfort level has increased.