Thursday, April 22, 2010

What this hospice nurse hates.

I hate ALS.

Amyotrophic lateral sclerosis.

ALS is also known as Lou Gehrig's disease.

The cause is unknown.

In ALS, nerve cells (neurons) waste away or die, and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. When the muscles in the chest area stop working, it becomes hard or impossible to breathe on one's own.

There is no known cure.

Today, I went to see a patient with ALS. She is close to my age. We have had many ALS patients on our service. We do the best we can. It is hard. It is a very cruel disease.

Imagine sitting there, unable to hold up your head. Drooling because you cannot swallow your own secretions. Having trouble breathing because the muscles that help you to breath aren't working anymore.

Now, most people have only a faint inkling that something is wrong when they are first diagnosed with ALS. They may have a twitch in their thumb that won't go away. They may notice they trip more easily. All random small things. They go the MD and walk out with a death sentence. Talk about shocking news.

I cannot even imagine what that must be like. It must seem like a nightmare.

But the patients are so brave. I am always in awe of them.

There are many specialists here in the Boston area that work with ALS patients. They are very good at what they do, but they cannot cure the disease.

Then we are called in. When the going gets rough.

I don't have any magic tricks up my sleeve. I cannot make it better. I try. I can give them some meds to help, but nothing is a panacea.

I get upset by this. Most patients can be helped to feel more comfortable. Those visits give me some satisfaction that I have made a difference.

But not so much with ALS.

When I leave the ALS patient, I always feel guilty. I can get up and walk away and drive my car. I can use my arms and my legs without a thought. I can scratch my nose when it itches. I can talk on my cell phone. My fingers can dial with ease. I can eat without choking. I can swallow my own secretions mindlessly. I can take deep breaths.

And I usually take it all for granted.

But not on these days.

On these days I am reminded that life, and particularly death, can be very cruel.

Unjustifiably cruel.

It makes me rethink what I am doing as a hospice nurse.

Sure, many people think that hospice nursing is a special area of nursing. That we go into situations that most would want to avoid. And for the most part, that is true. We do our best to provide the patient with a "good death". A comfortable death. Death on their terms.

We try to give them as many good days as we can. We go into chaos and try to deliver some calm and peace for the family. We try, we really, really do. And many times, we succeed.

But it doesn't mean that we always like it. Or that it doesn't bother us. Or that we always feel like we are doing enough. Giving enough. Coming up with solutions to immediate problems that happen on a weekend at 6pm.

When there is often no one there but us to figure it all out.

I have often called MDs on the weekends to help me. The answer I usually get is, "Well, you are hospice. What do you think we should do." And I usually tell them what I had already thought. No additional input from them. No other options offered. I hang up discouraged. I didn't go to Harvard Medical School. I went to nursing school and you are telling me that I have the same solution as you? It feels crazy sometimes.

Or, they say, "Well, if the patient is that sick, perhaps they should go to the ER."

"No", I say. "The patient wants to die at home". Why don't they get that?

I do confer with our on-call Hospice supervisor or our Medical Director. They are helpful, and I love and admire our team, but it ends up it is just me in the patient's home with a nervous family hovering nearby and I have got to fix it as best as I can. And I do try. I am lucky that I have 30 years experience on my side and that I am a old tough gal. I do see myself as fairly competent and I stay as long as it takes to come up with a resolution. I do my best and then I have to leave them with a promise that if it gets worse, we are here. Just call.

But I know that there is no good solution.

And that saddens me.

We can only do so much, I know. But I want to do more. Give more. Help more.

Sometimes I leave an ALS patient visit very sad. And very angry at the Gods for allowing this type of human suffering. It just is so incredibly unfair.

So, today, in honor of all my ALS patients, past, present and future, I just wanted to share this with you. So you know. So that you are aware that there are some things even the people who see the worst fear.

I am not asking you to feel sorry for me or my patients with ALS. I am not asking you to be happy that you do not have it, because none of us know what lies ahead in our future.

I just want to thank you for allowing me to share this with you.



  1. Thanks for this post. My grandfather (who passed away before I was born) had ALS. I have often wondered what it must have been like for him and others similarly afflicted. And I have wondered what it was like for those friends, family, and medical professionals who tried to visit, bring cheer, and help.

  2. I don't know you, but I love you.. and as a hospice nurse I feel so many of these feelings as well. To go down into the valleys and witness the suffering of others is a great privilege. Our courage pales next to that of our patients.
    Thank you for being you and for being such a light.

  3. Thank you so much for writing this. And thank you so much for helping ALS patients, even though it seems like there's nothing anyone can do. May God bless you.

  4. thank you for sharing. As a hospice nurse I have at times been disillusioned w the suffering people and families endure. my father died in 2007 at the age of 68. I was helpless to relieve all his suffering but I know we all did our best and I hope he knew that too.

  5. My Mum has just been diagnosed with ALS. She's 59, I'm 26. I didn't think I would see her deteriorate like this until we were both much older. 6 months she could walk and talk... Now she can't walk, can barely talk, and can't swallow. She is getting a feeding tube. Any advice on how I can make the most out if our time left together is much appreciated. I'm struggling

    1. Sarz, I have just read your comment. I am sorry I did not respond sooner. Please let me know how things are going. ALS is so hard to watch happen to a loved one. Such a cruel disease. And we all feel so powerless.

  6. My husband died of ALS. i have no money and am going to lose my house. There is nothing left of me. I am going to kill myself...

    1. I just read this today. Please write back to me.