changing minds

[gooseberry]

When we started this journey, Steve was ready to commit suicide he was so overwhelmed by his diagnosis. He said up front, no peg, no trache, just let me go quickly.

After travelling and doing many fun family things this last 16 months since he was diagnosed, now he is thinking about a trache. This discussion started today because my 13 yr old asked if Steve was getting one. I said dad had said no to it. He was relieved. I was relaying this to Steve when he said well, I have been thinking about getting one.

I don't know what to say to this.. I suggested he look into it more because it wasn't like his peg tube...get it and forget it other than a flush or feed.

So I wonder, how many of your pals have changed their mind?

 

[GilWest]

It's a slippery slope...quality vs. quantity...for the patient AND the caregiver/family...

 

[Vincent]

Most decisions to forego treatments of any kind, in my experience, tend to be made when people are for the most part will not need them tomorrow. When you are young and healthy the idea of adult diapers is enough to say pull the plug, let alone carrying an O2 tank where ever you go. But when faced with immanent death complex intervention doesn't always sound bad. Not for everyone, but for some. The big problem to me with going invasive ventilation is the fact that at some point you or someone else will have to decide when to terminally wean off. Kind of think I'd like death to be a surprise........

 

[zoohouse]

I actually think that Tim would probably want a ventilator but knows that in a small community like this it would mean that I would be having to do it mostly on my own. I had to be honest with him that I don't think life would be very happy for either of us, as he would by then lose the ability to talk and he found that the tobi eyegaze mad him terribly nauseated. It bothers him if someone is even standing in his peripheral vision, and his next progression would mean being locked in. I hate this disease and the decision it forces us to make.

Paulette

 

[poppies]

Gooseberry you are so fortunate that Steve has been engaged in doing things to enjoy life since his diagnosis. My PALS has not done so. He made the decision from early on that he would not have any medical intervention and is sticking to it. Not even a feeding tube. If he changed his mind about the feeding tube I would be all for it, but the trache is another story. It is an enormous decision to make. Thinking of you all as you face this difficult decision.

 

[Atsugi]

Steph, this is a really sensitive subject, and I hope nobody gets PO'd by my input. I think it's important that everybody understands what they're getting into, and can prepare for it.

Some CALS have expressed that they wished their PALS didn't get a trache. From one perspective it lengthens the life of a paralyzed loved one, and from another perspective it lengthens and intensifies the caregiving needed during a long dying process.

My wife knew the dying process well (she was a doctor for over 20 years). When she got ALS, she refused all tubes and insisted there be no trache. She hoped to live long, of course. I planned to buy a new house so it would be easier for her to wheel around.

As it turned out, her progression was quite rapid. She lived less than a year from first symptom. So my experience as a caregiver was short but intense. Fortunately, we had tons of support, mainly from the VA.

As is often the case, it was the inability to exhale strongly that raised CO2 and caused her organs to shut down during the final week. She refused oxygen, insisting instead on morphine to prevent air hunger. With morphine, she was never panicked or anxious or afraid, even when she had too little air. She slept much of the last few days. Finally, her eyes locked up and she was incapable of blinking or moving her eyes to communicate. I am quite certain she did not want to live like that, staring at the ceiling. I'm glad there wasn't a trache keeping her alive. Fortunately, that was her last day. She was surrounded by all her family at home, and I was holding her hand when her heartbeat finally faded.

Others may have very different experiences and opinions, of course.

 

[gooseberry]

I feel that since Steve is needing his trilogy for 18 hrs or so a day he is thinking the trache would help. I dont think he really understands what it means though. Julien is absolutely freaked out by the idea. He says he cant help with his dads care because it is just too stressful. I am so torn between wanting to be supportive of them both.

 

[Nikki J]

Have either of them ever seen a PALS on a vent. It is probably harder than Steve realizes and better than Julien fears.
Maybe look for accounts and videos online if you don't know / can't find a local vented PALS. As Vincent points out there is the risk of needing a terminal wean which could be horribly traumatic for you and Julien. It is a very very tough issue

 

[gooseberry]

Yes they have seen a vented person but I dont believe Steve understands the care or all the ramifications.

Julien is beyond stressed about what is happening with his dad. He goes to counseling, takes a med, exercises regularly, eyc to help with the anxiety and depression. He is in such pain over his dads illness

 

[Barbie]

how do YOU feel about it? forget what Steve wants or what Julian needs. think about what the trache will mean to you. I am only saying that it is Steve's decision, but you have a choice too. and if you were to choose to not care for a trache patient because of your feelings and Julian then Steve needs to know that and it may affect his decision.

I am sad for you, I know how hard this is. I thought long and hard about this same thing and decided that I could not care for him any longer if he got one. I told my husband, and of course he was very angry. I don't blame him because he felt like I was choosing for him. but really I was standing up for myself because I knew that I could not do it (this is just my opinion you understand). He is ok now with it all

 

[scaredwifetx]

I hate this disease and the choices the PALS and Cals have to make. I read this post everyday because it is the only place I feel centered and know that I am not alone. Sometimes reading the posts are very hard and I feel like screaming for all of us. My co-workers, family and friends are trying to make decisons about vacations, buying a car, where to eat, getting married, having children and have so much hope for thier future. Cals on the other hand may have these things going on in thier lives but is overshadowed by every step of this disease. My mind never stops anymore and nightmares are bothering me in my sleep.

I love my husband dearly and he is my soul mate. I would have traded places with him if I could but I am not able to agree to taking care of him with a trache. The first thing he talked about was that and stated he did not want it. I do not see him changing his mind but if he did I would share my feelings with him. I agree with Barbie. You mentioned how your son and Steve feel but not yourself. I admire how much you love one another and know that in the end you both will agree and make the decision together.

 

[gooseberry]

I don't know if I want to do it. I am tired, my shoulder I dislocated can't properly heal, I feel like I run,run,run always trying to get everything done. And nothing is ever good enough. I feel done and burnt out. More and more care is required...that is just normal, but I just don't know how much longer I can juggle it all. It may be time to get some help from the va and let juliens counselor take care of some school issues. Right now I just need a good nights sleep and no drama.

 

[lgelb]

There are different experiences and prejudices that everyone takes into this. Mike, I believe your wife had neither PEG nor BiPAP. Most making the trach + vent decision have one or both. I don't think these 3 choices should be equated so I am making this distinction.

I think a lot of it comes down to which the PALS is most seeking to avoid at a point in time: wanting to die, or dying. The problem is that the PALS needs someone to implement that choice.

Other than that I will only point out that there are many more peaceful ways to manage death from respiratory insufficiency than there are U-turns from being vented. So for everyone considering a vent, while s/he is looking at vented pt videos or whatever, I would suggest reading some of our death stories here. A vs. B.

 

[gooseberry]

Today Steve fell and couldn't get up. I had gone to.get us lunch but luckily his dad and a friend were here. He wasn't injured but it scared him. I think he is progressing and doesn't want to tell me so the trache idea is his solution.

 

[lgelb]

Steph, I would just make sure he knows that a trache isn't going to slow any aspect of progression. Falling down becomes not walking, not much movement, for most PALS, and so it is not just the logistics of traveling dependent on the machine (which describes a lot of BiPAP users most/all of the time anyway), but doing so while also confined to a power chair and requiring lift transfers. And of course, the care, monitoring and maintenance of the stoma, rest of the PALS, and vent.

Obviously, some people here do this. Diane has created some good posts here and her site has more.

Despite our having not considered a vent in Larry's case, I must say in fairness that the fear of having to deal w/ a terminal wean, that is, sedating the person, gradually decreasing the pressure and ultimately stopping the vent, seems overrated. After all, many -- possibly most -- BiPAP users die after morphine is titrated to complete comfort, which is a conscious choice, at least before the fact, as well. And the process from the patient's point of view is very similar, esp. when the BiPAP is gradually titrated down.

But to have chosen in a way that minimizes regret, presumes honest pre-need conversations and decisions. So that goes back to Barbie's point -- everyone should lay out what they feel, what they fear, and be clear. Saying what is in your heart here is fine, but saying it to Steve is crucial.