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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Great Saturday and More...

I had no intention of blogging tonight but it's close to 5:00 am and I'm still wide awake so here I am. It's still Sunday to me even though I know some people are waking for work. Yes, I remember Mondays well. Days seem to blend together now. I know days by Dr. visits and I know when it's getting close to Saturdays with my Mom. I have time with Amanda and Brayden tomorrow. I will get to see Brayden's recently discovered ability to crawl, and Amanda is treating me to a mani-pedi. I'm pampered.

Saturday was crazy fun with Mom and Julie. We hit up Marshalls and Old Navy. Yes I did get some new shoes for my newly freed feet along with some clothes to fit my ever expanding body. My stomach is huge, especially on the right side. Now I know there are different body types. Everybody  knows the apple and pair shape. Now don't get me wrong, I've gained all over but in an odd way that 40 has nothing to do with. My stomach is fatter on the right side, my left boob appears larger than the right and my useless right leg is much smaller than my left. there are other oddities going on with my body shape too.

Let me explain these. ALS has decided to play around with my right side much more than my left. I have lost abdominal muscle and you'd be surprised how much fat and organs a little abdominal muscles can hold in place without effort. Mine are very weak so everything protrudes out, they're weaker on my right side so it protrudes out more. My left boob seems larger because the chest muscles on my right side have atrophied, so with my bra on and breasts moved up in the right position (that does have to do with 40) they become like two different sizes when they're not. My right leg is just atrophied all over so it's quite a bit smaller than my left which  is still holding muscle and fat.

Back to Saturday, I wasn't about to go try on anything that had to be pulled up my legs, so I just tried on tops where I found them. It was an unusual scene. I loved every second of it. We had fun, finishing the day off at Steak n Shake. I had a peanut butter and banana milk shake and some of Julie's soft chili cheese fries. At home I could have gotten them down better but it would have been a site. I have my ways of getting things down that I just can't do in public.

None of this mattered to me Saturday. We laughed getting me in the car. We used a transfer board a couple time and I went for it a couple times withe my left side strength. One time I was making it and Julie came in toward me from the driver's side. I saw it coming, she was reaching out for my left arm to help me along, I said "This is my good arm." It didn't register so when she pulled the arm I went straight down on the seat. My right arm can't hold my weight. Mom was still helping with my lower half so with some twisting and contorting I made it in the seat. It was one of the better laughs of the day. I have several but I'll stop there. I treasure the days that come together by me having the energy and others the time to spend. Too often I feel too weak, major fatigue or back pain going on to have a day like that.

I did get a little done on the site today. That's an ever evolving slow process, especially if I intend to put my efforts in the blog. The blog takes more than I ever imagined.

I'm glad I shared this happiness because I plan on going for some tough topics this week or sometime really soon unless something pressing comes up I want to share.

If my grammar mistakes bother you, just get over it. I'm not a professional writer and I mentioned this was a concern of mine from the beginning but I'm getting over it. I've seen much worse. If you're have trouble following, it's more than likely a comprehension or ego problem on your end than my writing skills, OK?

Until next time, take care,

April

 

 

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