Steps to take to end my life sooner

[Lkaibel]

My husband was just diagnosed three weeks ago, and he can still do most things but has some clear and active plans to end this when he wants to end it. He is actually joining Dignitas and plans to go to Switzerland when that time comes for him. Which is a little more complex for a PALS because you still have to be able to self administer the drugs. Maybe he will change his mind, but since he actually first talked to me about end of life weeks after we met (with no known health problems, I might add) I sort of doubt it.

The way I have handled that is I leave it 100% in his hands and have 100% respect for whatever his choices are. He is fully aware I cannot actively assist in a "suicide" (I use that word in quotes because I don't think this is actually the same thing) but also wants me with him, which is why he wants the Dignitas option.

I hope that you do find some pleasure in life with the adjustments like a van and a motorized chair. I also hope you find all the support you need for whatever choices you make.

 

[patoyeah]

If u think there is a chance u might be here till Christmas, I think a feeding tube probably makes sense. U stated u r progressing quickly, a reason for a feeding tube soon... from my understanding death by starvation is difficult for pals and those around them. It also depends on how u become disabled. If your breathing is strong and u can not swallow, more reason for a feeding tube.

If u have time, maybe research that a little. The search function at the top right of your screen can access old threads about this.

Take care,

pat

 

[GregK]

The feeding tube is invaluable for hydration and medicine.

 

[skipper66]

My dad had limb onset and only was unable to swallow in I'd say the last 24-48 hours of his life. But, they didn't inject his Ativan or morphine. They gave it to him in liquid form with a dropper. My dad never had the peg. But, he was older at 81. He also used a bi-pap at the very first start of his ALS. In the last two years of his ALS surprisingly he didn't need one. Which isn't the norm.

 

[faithandlove]

I have limb onset too, but I do choke easily and I feel like my food is stuck in my throat all the time. I, also, get bronchitis every year, and they want me to have a vest that vibrates and loosens the phlegm and a nebulizer and a trilogy. So much equipment!

After reading the posts and some posts through other threads, I am going to get the PEG when the doctor feels it is time to get one. I guess I need to take one day at a time, and be grateful for each day.

I really appreciate all the posts. Good insight for decision making.

Deb

 

[affected]

If you are going to get a peg talk to your doctor about it now.

The big thing with strategies such as peg and bipap is to start them early.

If you wait until you are losing weight, fatigued and not breathing well, the procedure takes a bigger toll on you and you may not gain a lot of benefit.

Getting the peg early and keeping your weight on is the key.

 

[lgelb]

Lenore & Deb, said it before, I'll say it again -- no one has to go to Switzerland or worry about self-administration. Opiate titration to comfort in ALS has not resulted in any jail time, nor is it "suicide" as major religions define it. The key is intent, not result. And of course, the documents.

 

[Lkaibel]

But I think you have to get to some very significant disability to get to those opiates. It's all about choices and timing. I am sure hoping that's not a consideration for a long while yet, but of course we never know. ALS patients have been one of the more frequent at Dignitas .

I feel ambivalent talking about it even because I sure don't want to discourage others from seeing this through to a natural end. I know for many/ most there are more reasons than not to go on.

 

[Atsugi]

Lenore, in our case, when my PALS became pretty much bed-bound, she told me "It's time to call hospice." We had hospice at home, which initially meant not a lot. A nurse visited from time to time, and we signed a contract saying that if there was an emergency, we would not go to the ER, we would instead let nature take its course. The hospice people put a box of meds in our refrigerator, which included morphine.

When my PALS found her breathing was uncomfortably difficult, we gave her morphine. This opened up the lungs, and within a minute, her breathing was much better and she was happy.

Because breathing was now chronically difficult, the hospice people said we had entered "Crisis Care" status. So a nurse was in the house 24/7. We discovered that most of the nurses were not very knowledgeable, but they all pretended to be experts. None had cared for a paralyzed person, and none understood ALS. So my kids and I took care of Krissy, and I taught the nurses something about caring for a paralyzed person with ALS.

In case you didn't know: Some people believe that you must not give a "fatal" dose of morphine. This is not true for us. You are intending to relieve the patient's discomfort, so you may give as much as is needed to do so. Of course, at some point, the dosage is fatal, but your intention is not.

Also: You're right, it's not suicide, it's not even Assisted Suicide. The disease is doing the killing. The patient and caregiver are merely trying to manage the dying experience so that we avoid/treat pain and panic, and so that we pass away at a time and condition when it is best for the patient.

 

[lgelb]

Lenore,
You do not have to be at some set disability level to be prescribed opiates. They are frequently prescribed for comfort in cases of air hunger and other symptoms common in ALS. The prescribing decision is the physician's but often initiated at the P/CALS' request, as in our case. The doc is not at home with you perceiving new or worsened symptoms.

I am not advocating any course in particular, as everyone has the right to write a unique death story, but it's a common myth that only the near-dead can be rx'd morphine. There is a problem with opioid abuse in this and many other countries, but ALS isn't why, as most physicians are aware.

 

[skipper66]

The hospice worker was just getting ready to pronounce my dad dead when he opened his eyes and stared directly at me. I grasped tightly to his hand. Then the hospice worker administered him another dose of liquid morphine and then dad was gone in seconds.

 

[Lkaibel]

Thank you - good perspectives and information. I'm just sorry for everything we have been through here and will go through. We are just making the best of a very hard thing.

 

[Scotiaspirit]

I have decided (at this point - subject to change) that I will not allow a Trach tube. I will probably allow a PEG by end of summer or early fall (if I can hold off that long) will be having my PFT repeated in late August. Choking is not a fun experience and I am still partially mobile with the assistance of a walker and wheelchair (manual at this point in time), to have less effort to have a meal via PEG is probably not a bad thing, as chewing and swallowing is becoming more laborious for me. It takes me 2x to 3x longer to eat a small meal than it does for my other family members at this point to eat a regular size serving meal. Having the feeling of food stuck in the throat can be distressing at times too.

I'm sick and tired of so many appointments; I believe I will soon reach my saturation point and just say NO to further follow-up appointments as it becomes a cash cow for medical practitioners to see patients on repeated basis. One gets sick of being poked and prodded, having student medical clerks come ask a plethora of medical questions (seems like over and over), having a room full of medical students watching us like a lab rat. It will be soon time to say NO more to appointments (other than GP appointments one on one between patient and doctor). A physiotherapist says how important it is to keep doing stretches, repetitive exercises, but they do not feel the burden it plays on a weakened body where it seems we have to work 10x harder just to maintain a diminishing amount of movement. Again it is a cash cow to their privately run physio-therapy business; where I wonder if it benefits the practitioner more than it does the patient?

Where does one reach the point and say, just leave me alone? No more pokes, no more prods, it is tiring to wait in waiting rooms, there are people coughing and sniffles (usually family members of the patients and PALS in the waiting room). There is NO HOPE of recovering from this monster, it is like a thief in the night coming to rob more and more away from us, seemingly like on a daily basis.

 

[scaredwifetx]

I want to thank everyone for their honesty on this thread. I have learned quite a few things that I didn't know and can assure my husband that when his times comes...we can take of things without fear of what will happen legally.

 

[KimT]

I've already been prescribed opiates. For pain. I haven't used them in a month or two because my pain is now being controlled by Tylenol and Advil.