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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My Face

Hello again, I'm back. Hopefully I can keep today's post an easier read. I do want to pick back up on something I didn't get to last night.  My face.  I've known since diagnosis ALS affects the voluntary muscles, but I never really thought much about the face. I'll give myself a break on that since I was thinking more about muscles that kept me walking, dressing, wiping my own ass, and especially breathing.

I first noticed a slight down turn on the right corner of my mouth, but for some reason I thought that's as far as it would go. I have had twitches occasionally around the face between lips and nose. Don't know what their called, but you know the parenthesis that become more apparent with age. It's been a while, but I went a couple of months with a ripple starting at back of jaw to front side of chin and oddly only on my left side. The only cramp-like pain I've had was on the right side of jaw. That was at the same time I had a crown put on a back molar. I kept telling my dentist my jaw hurt really bad. He couldn't come up with any reason except possibly TMJ at the time. Other than those things I thought nothing of my face until several months ago I started noticing that the right side of my face was dropping, especially the chin, and then around my jawline. When I first noticed, I really had to point it out for people to notice. Now if they try to say they can't tell, I just know they don't want to say because it is very obvious. I don't want to make anybody uncomfortable.

Surely everyone reading this either heard this phrase from their parents, said it to their own kids or at least heard of parents saying, "You better stop making that face or it will get stuck like that." Well, my face has never excactly been stuck in an expression, but if I gave a big smile or the expression of pain I could feel it slowly relaxing, sometimes needing to help it along. Very strange feeling. By this time felt sure it was ALS related. I've always been able to do the eye brow roll or easily just arch one at a time. I can still do it, but I have to be very intentional about it. We moved a wall mirror in the room from the hallway after painting and I can always see my face. I look and I'm thinking my face is relaxed, but it usually looks like I either have a grimace expression or I'm about to bust out in tears. It kinda freaks me out.

The real kicker is I've always had this auto-pilot instant smile when someone takes my picture. My sister usually  jokes with me about it. She's usually the big picture taker at family holidays. She'll say, "look up April, I'm taking your picture," and I just instantly smile a wide smile.

Since my diagnosis, my husband has been taking more pictures of me. He started saying "smile for this one". I thought I was. It felt like I was smiling ear to ear, then I would look at the camera and there was no smile. It's strange because I feel like my muscles are doing it when they're not. You can see an example on my home page. In the picture of me and Abby in the wheelchair, and Tony is kissing me. I thought I was puckering. He started asking me "what's wrong honey?" a lot. When I didn't feel I was indicating any thing was wrong. He thought I looked sad, mad or in pain. In pictures I'd try really hard and it just looked weird. It looked nothing like my smile, more like I was trying to intentionally have a crazy looking smile. I looked at some footage he filmed not too long ago and for the first time I saw the right side of my mouth really drooping when speaking, my lips all uneven. Nobody told me. I don't blame them. I guess they figured I knew and thought it would be rude to bring it too my attention.

Tony makes sure to keep telling me how beautiful I am. When just thinking of it, I appreciate it and it means so much to me how he tries to keep my morale up. It depends on my mood and level of acceptance I'm feeling at the time as to how I might react when he's saying it. I have for now, found a way to get my face relaxed and have a little closed mouth smile.

I can see how this my seem vain and insignificant when I'm dealing with a terminal disease, but I don't think I'm the only person in this position that feels this way. I'm not claiming I'm some exceptionally beautiful person that has suddenly turned disgustingly ugly either. I'm just trying to stress how cruel this disease is.

While trying not to sound delusional, it can just feel like this disease has a personal vendetta against it's victims. Like before it goes for the real kill it wants to painfully throw you around a bit first saying, "Oh you like smiling for pictures and making your unique expressions? OK, I'll go ahead and take that right now!"

I want to also make it clear that in some ways my progression has it's advantages. I also am very aware that so many have lost the battle sooner than I have lived with it now since diagnosis.

Real soon, maybe tomorrow, I may lift up a bit and mention some advantages that come from the most dreaded losses. Stay tuned, it will make sense.

I want to end by saying I am thankful for the things I'm still able to do, which is a lot compared to later stages. Also a big thank you to all the caregivers out there. Their role and suffering should never be underestimated.

Until next time, take care

April

 

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