Death with Dignity… My Thoughts

To my loved ones reading this, I want to say this is not a reflection of my intentions at this time.

It is something I believe most people with a terminal illness like ALS have had cross their mind. At this time a person diagnosed with ALS is aware they are dying, and it will likely be an uncomfortable slow death. I know there are a lot of patients who have chosen invasive ventilation and are happy, comfortable and living a life with quality and purpose. I’m thankful this life extending option is available.

There is hospice. Another thing I’m thankful for. I’ve experienced the care they provide and I commend all nurses who take on this responsibility. They can’t by law intentionally speed your death. They do everything they can to make death as comfortable as possible for the dying while educating and comforting the family. Even with the best efforts it is no guarantee you will have a comfortable death, or that they can predict the exact time or even day you will die.

You can put a do not resuscitate-DNR order in your Advanced Directive or Living Will, but if you’re at home and an ambulance is called because of respiratory crisis, unless they are shown the document, you will likely find yourself on an invasive ventilator no matter how clear you’ve made it to family and your doctor. It’s possible you will be even if they see the document. EMTs are trained to save lives and they do it well. I also commend them for all they do; however if you’re a terminally ill patient suddenly stuck with this life support that you made clear you didn’t want, you’ll surely not comfortable. You can still choose to have it removed, but when and how now has to be decided. Something you may have really wanted to avoid is your chosen legal agent being forced to make this decision. Choosing who can make decisions on your behalf early on is highly recommended so that your wishes are met. This doesn’t mean the decision is going to be easy for them if it comes to that.

I’ve given examples of what can go wrong even if you do all the right things to make your wishes clear, it’s no guarantee. You can still end up vented whether you want it or not.

Some benefits of assisted death: First is that it’s in your control. You know when your quality of life has reached the point of outweighing the benefits of living for you and know you will die painlessly within a few minutes. You can choose to have loved ones with you or not. It also gives your loved ones the ability to choose to be there or not. If it is decided others are to be present, you can choose a date and this gives them time to prepare emotionally and take time off work in advance instead of always knowing the call can come at any time.

I’m aware that one of the biggest obstacles for the terminally ill, even if they’re in a place that allows death with dignity is Religion, even if it’s not the belief of the person dying. Not wanting to go against a loved one’s belief is a huge deciding factor. A dying person usually doesn’t want to do something that leaves their loved ones in emotional despair. So they suffer on.

Many consider death something that should be left in their God’s hands. To me this makes no sense. If you would die without mechanical ventilation, isn’t that overriding God? I just don’t see the logic in it being miraculous to keep a life going that God obviously intended to end, but it’s not ok at all to end the suffering of a life God also obviously intends to end.  There are premature babies born every day with no chance of survival even with advanced technological care. That indicates this is God’s plan, his will, to end this life. When very aggressive methods are used to sustain this life, I never hear of anyone condemning the people involved. They are given hero status and it’s considered a miracle.

How can you rejoice in going against God’s will by saving a life God obviously is ending, but yet you damn a person to hell for deciding to end their life in a humane way when it’s a life that God is also obviously ending? I see no logic in that.

I have important decisions to make. One of the biggest factors is how my family is affected. I believe ultimately I will be supported in whatever I feel is best for me.

I think it’s wonderful we have and use the advanced technology to save a person that will otherwise die.

I also think it’s wonderful to have a choice to end a slow suffering death in a very simple, affordable and comfortable way. I emphasize the word choice.

These are thoughts I’m dealing with amongst many others, and that’s what this blog is for me. It’s an outlet for my thoughts and feelings. I’m thankful to not be progressing super fast, I am progressing though and I do have important choices to make.

Until next time, take care,

April

 

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A Sticky Situation

It's been a rough day. When I woke up I felt like I needed to get my mask on right away, I needed air. Because of the full face masks leaking, I've been wearing my nasal mask only, even at night. It keeps a great seal and It's very easy to take on and off.  I usually have it on most of the night before going to sleep and take it off after I've slept a little. Some days I feel like I need it right away when I wake and some days I don't. Today I did, but there was a problem.

First I had sticky mucus in the back of my throat that felt like it could seal it closed. Add to that my nose was congested, but it was hard to blow anything out when I felt like I needed to breath in, and it felt like the congestion was sliding down to the back of my throat. It was different from what little experience I've had with post nasal drip.


I felt like if I put on my nasal mask it would push more mucus to the back of my throat. Tony helped me in my chair to the sink where I tried to cough up this sticky mucus and blow my nose. It wasn't easy blowing out when I strongly felt the need to take a good breath in. After a little panic and a lot of  tissue, I felt I had enough out to put my mask on. Halfway through the first inhale some mucus does come from my sinuses and stops right at my throat. I pulled the mask down and did get that out quickly fairly easy. It wasn't as sticky. After that, I put my mask on and I've been OK since. No sticky mucus and I've used my vent as needed throughout the day as usual. But this experience really scared me and I've been anxious all day. Now I'm more scared than ever to catch a cold. I haven't in years. Knock on wood.

I feel pretty sure this has to do with my big reduction of fluid intake. I know there is a suction device that helps with mucus. For some reason I've always thought they were used more when you have a problem with excess saliva, and I have the complete opposite problem, even when I was guzzling water.

This is ALS for you. As soon as you get settled in to a change, you're hit with another one. I'm still not fully used to that fact I can't walk. 

Tony put a healthy shake together for me today that tasted great and was easier to swallow. I've been told from the beginning water would get harder for me. We're both going to try to keep me better hydrated. Hopefully it's something I have more time before it's a constant problem.

Come on ALS, you sorry Mother Fucker! At least let me have a day to have energy enough to enjoy a shoe shopping day for the first time in over a year. Aren't you busy enough with all these new fasciculations you've been adding to me? No, they don't hurt physically, but I know exactly what they mean? I hate you ALS!

Some of my regular readers are probably happy to see this blog post about half the length of the others. I'm fatigued, irritable and I'm cramping from typing. I may take a break from blogging to give the website some attention soon. 

If you have any questions or have something you'd like for me to add to the site, please use the contact page and I'll get back to you as soon as I can. 

Until next time, take care,

APRIL

 

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