I had a bad day

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I work in a hospital that specializes in vent pts. One of my patients since July is a 40 year old woman who was dx'd with ALS last November. She rapidly progressed from a young, vibrant mother of three young kids to completely paralyzed and on a vent this past July. I was off for four days and when I went back in today I found out that she has decided to turn off the vent tomorrow. The sedation will start at 8a, and the vent will be turned off at 11am. She can no longer endure the pain, she can't move and the last function she had...mouthing words, is no longer there. She can barely move her mouth, now...she exhausts herself trying to mouth just a couple of words. She said goodbye to her kids, ages 9, 12, and 15 last night; she knows that it was goodbye but they don't. Today there was a constant influx of people coming in to say goodbye. There was a group of her friends making collages of her with her husband and her kids. She wants these collages to surround her as the sedation is taking effect, tomorrow. I went in to say my own good bye...it was just heartbreaking. She told me she would watch over me, and be an angel to my children. I held her hand and then spent the rest of my day in tears. I know that she has no quality of life and that this really is for the best. It's just so incredibly sad. Her mind is still fully functioning...I can't imagine what she will think about tonight...or tomorrow as this starts. I just needed to get this off my chest.

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I'm so sorry, my heart goes out both to you as the caregiver, and to family and patient as they face this, oh so difficult situation. This has got to be one of THE most difficult situations in direct patient care. I have no words wisdom, as I've not yet delt with these circumstances, but I know that you will do your very best to help support both her and her family. God bless, and know that we're here to bouy and support YOU as you support them.

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I am so sorry, this is just so painful. I just wanted to let you know that I am praying for you and that mother and her family. (((((((Hugs))))))))

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this is a terrible heart-rending disease...strength to her and to you

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Specializes in OB, ortho/neuro, home care, office.

I think - to me this has got to be the worst disease there is - alongside Alzheimer's. I cannot imagine losing control of everything and having your mind totally intact.

This story really wrenched my heart and I read it to my hubby, and he's a strong man. There were tears in his eyes. He had heard of the disease but didn't know what it did.

My heart goes out to you and will be thinking of you tomorrow. Know she will have more control when she gets to the other side :)

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Specializes in Tele, Acute.

Lisky, I can feel your pain. I have a nephew who was dx with ALS in 1988 at the age of 24. He has done pretty well over the years. He has been wheelchair bound for about 9 years and does use an external vent to breath. He is married, with two kids 15 and 13. By the grace of God, he has managed to survive longer than anyone thought possible. On top of the devistating disease, we both lost our homes in Katrina (I bought the house across the street 5 years ago to help with his care).

The saddest part of this devistating disease is the fact that although they are silenced, their mind is totally intact. We talk about "that day" and, just like your patient, it will be his decision. My poor sister, sometimes I wonder how she copes. He is like a brother to me and I know I have some very bad moments. Especially now, while we are living in different states (hopefully not for much longer).

Oh my God, your story has touched me so much, my thoughts and prayers are with her and her loved ones. And to you, Lisky, what a lucky patient she was to have a kind, compassionate nurse at her side. God Bless You.

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((((BIG HUG)))). This will be painful for you, her and everyone that cared for her. I lost a patient that I took care of for 6 years in August. Reading your post brought the day of his passing back to me. You will remember her always. I also had a patient when I first became a nurse in 1992 she had breast CA that spread everywhere, she was admitted to the hospital in January and passed away in September, the last two months she was in a coma, we think she was trying to hang on to see her first grandchild that was born in October, but I can remember her like it was yesterday, several of the nurses even went to her funeral because we were so attached to her.

Even though it is hard it will make you a better nurse.

You are in my thoughts and prayers.

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Specializes in ICU.

What a difficult decision the patient and her family has made. My thoughts are with them and with you as well.

I took care of a similar patient for a couple months in clinicals who had ALS and was paralyzed and on a vent. He could not speak or make gestures, and yet could hear and feel everything. Despite this, I was amazed at the level of interaction we were able to have. It was a great learning experience, and it helped me to start to detect subtle changes in condition.

Good luck tomorrow - I know her family is lucky to have you with them.

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...I can't imagine what she will think about tonight...or tomorrow as this starts. I just needed to get this off my chest.

i'm so sorry, lisky.

my experiences w/als pts, is they are at peace w/they decide 'enough'.

the disease wreaks havoc on their bodies as well as their spirit.

towards the end, they're just plain tired of everything.

i'm certain your pt will be given something tonight, for any potential anxiety, fear and subsequent insomnia.

it's just so, so devastating.

but please take comfort that she probably is ok w/her decision, and looks forward to the release of this suffocating disease.

it's clear that she bonded with you and so, brought her much comfort.

she'll be ok.

as her family will, in time.

whenever you feel overcome with a warm, loving yet powerful presence, that will be your angel, true to her word, watching over you and your loved ones.

with peace,

leslie

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Thank you to all of you for all of your kind words. Today was a really hard for everyone involved in this pts care. The whole atmosphere at the hospital was very sad; it is a very small hospital. Tomorrow there will be a hospice debriefing regarding the whole experience. Today was sad...but the days to come will be also, as this patient has been in our facility since July...it will be very hard when they fill what has been "her" room. I know this is a hospital, and I am a nurse and this is life. I try to empathize with all of my patients; imagine what it's like to walk a day in their shoes when they are ringing for the millionth time...even if it is because they are just lonely. But, to try to empathize with this patient and imagine walking a day in her shoes is just unbearable...she was so young, her children are so young, and the disease progressed so rapidly. And through it all this pt remained so positive, and said many times how blessed she was. One of the doctors today...who sat with her through the entire process...sedating her, turning off the ventilator, and waiting with her while she passed on said that for as unfortuanate a situation she has been in for the past year, she was in some ways fortuanate to be able to say goodbye to everyone...some don't ever get the chance to do so. For now I am holding on to that thought, and that she is now at peace with no more pain. I am hoping that she is somehow comforting her children...as they are right now learning of their mother's passing. Please pray for them and her husband...they have lost someone truly amazing. And again thank you to all of you for your kind words and thoughts and prayers today.

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Specializes in Assisted Living Nurse Manager.

My thoughts and prayers are with you, the mother and the loved ones she left behind. Right now our very gracious father is holding this mother in his arms. She is free from the very disease that entrapped her life for too long. She is dancing and rejoicing with the angels above. She will be the guiding light that will guide her children for the rest of their lives. God bless everyone.

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Specializes in med surg, telemetry, stroke.

Dear Lisky, you are in my thoughts and prayers. I had to write you because this really tugged at my heart. I just lost my mom less than two years ago from MS which is very similar to ALS. She was on a ventilator for six months before she passed away (her choice) and had been completely paralyzed for many of her 30 year battle with the disease. Her mind was completely intact and she could only move her head a little and barely speak before she passed away. It was the most difficult time of my life and I still miss her every day but know she is not suffering anymore and is running through fields of flowers in heaven and eatin the chocolate eclairs she always loved before she became ill with the MS and had to be fed by G-tube. I quit my legal job of 25 years and became a nurse (LVN) after losing my mom and am working on my RN. I have had one patient with ALS and many with MS and it always affects me deeply because of my mom, it brings back the pain again. Your patient was so lucky to have you caring for her as a caring and sensitive nurse and I know you now have another angel who will watch over you just as my mom watches over me. Take care of yourself and God Bless you.

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