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Emrs

New member
Joined
Jan 31, 2016
Messages
6
Reason
Lost a loved one
Diagnosis
01/2016
Country
US
State
Az
City
Chandler
Hello.

I've lurked here on the forum since my mother's initial diagnosis in early January. That initial diagnosis was followed by a confirmation at our local ALS Clinic three weeks later. My mother has had significant health problems since 2002, so while she experienced symptoms for many (maybe 3) years, she wasn't diagnosed until she was already in the last stages of the disease. By the time we had our first clinic visit, my mother had been unable to speak or eat for over a year, she had lost complete use of her legs, and arms. Her core and neck muscles were so weak that she couldn't sit on a bed, or hold her head up. At our clinic visit, her lung function was 17%.

Well, now as I write this, I am sitting in an ICU. My mother came into the ER last Tuesday with aspiration pneumonia. We had been down this road multiples times before she was diagnosed, so we weren't particularly concerned. By Friday, her condition had gotten so bad that she was upgraded to the ICU and intubated early Saturday morning. Initially, we had hoped she would be able to come off the vent, but we tried, and within 18 hours, she was back on it. She is just too weak to breathe. I would have never intubated in the first place, and certainly not a second time, but my father insisted. I guess he needed the extra time to process things.

Yesterday, we met with the Pallative Care doctor. Thank goodness she was a compassionate woman. But she wouldn't let my father go down the tracheotomy road. He kept thinking she would come home and continue to live with a trach. The doctor patiently explained and re-explained until he understood. Also, thank God, she had a Living Will. It was so clear. It removed some of my father's guilt.

We plan to remove her from the ventilator tomorrow. I don't really know why we aren't doing it today. My children have a half day at school today, my husband has to work... Logistics, I guess.

I'm scared. The Pallative Care doctor explained that they will give her morphine to relax her lungs, and Ativan to keep her from being scared or having anxiety, and then something else to dry up her secretions. Then she should peacefully drift to sleep, and then pass away. We are so scared and hurting. Scared that she will be scared, scared to live without her. That being said, I tell everyone I speak to, that I will celebrate when she is freed from this body, and freed from this disease. Watching her live with the realities of this disease for the last several years, and the indignities that accompany it, anything other than celebrating seems to be a injustice to her and her journey.

My mother is a beautiful person. My father always says that he has never heard her talk badly about anybody. She was a teacher. She was fabulous writer and a lifelong learner. She is a devout Catholic, but has not been able to practice her faith much in the last 2 years, as getting her in and out of the car had become too difficult for my father and I, and our caregiver attended her own church on Sundays. The last year, my mother frequently attended our caregiver's church, but I know it wasn't the same for her.

This forum has been a great support to me. It has helped me to understand the disease, the progression, and how to help control her symptoms. We have walked this road in a very isolated fashion. We don't know other Pals, or Cals. The only Doctor that has helped us to understand this disease, and it's symptoms, was the neurologist at the ALS Clinic. This forum has been so helpful and I am so grateful to all of you for sharing your stories, knowledge, experiences. Thank you!!

I do have one question. Does anyone have any advice regarding her actual passing? Maybe suggestions of things I could say to her? Or music we could play? Or anything? Anything at all that might be helpful?
 
Talk to her and tell her you love her. Play her favorite music and hold her hand.
 
Tell her how much she has meant to you, talk about good memories you have of past times together. Tell her it is ok to leave you and her husband and be free and at peace in heaven. Massage her hands and feet and hold her hand.

I am so sorry you are going through this painful journey. You are in my thoughts and prayers.

Sharon
 
If she is Catholic, make sure you call a priest to make sure she is annointed. I am sure that will comfort her!
 
I can offer some suggestions as I jut lost my mom last month and she was at home. The family was by her side, we played her favorite songs and all told her how much we loved her and that she did not need to hold on for us. We promised to meet up with her one day and let her know over and over again how all her pain and suffering would end. She was also a Catholic so we called in clergy and they met with her and prayed. I am so sorry as I know how hard it is to watch your loved one pass. I know what is ahead for me with Steve and it I very heart breaking. My thoughts will be with you and your family tonight and tomorrow.
 
Her favorite music, scents, soft reassurance, holding her hand, nestle against her, what does nudging the machines matter? Just be what you would want your loved ones to be, when your time comes.

Best,
Laurie
 
All the suggestions are good. It will be peaceful.

Just tell her over and over how loved she is and hold her hand or gently rub her arms.

Sherry
 
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