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Klaadc87

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My introduction is in the introduce yourself section. Those who read it, my mom was place on life support yesterday, has sepsis, pneumonia, metabolic acidosis, kidneys have started to fail, blood pressure drops often and numbers haven't gotten any better regrading the metabolic acidosis, white blood count not better. Dr doesn't think she will make it and asked what her wishes are if her heart stops. ūüėĘūüė≠ Man I'm a wreck! When they first inabaited(sp?) Her she kept opening her eyes and she kept reaching for my hand. My siblings and I took turns holding her hand. It was like this the first few hours. Has anyone experienced this? Was she in pain? Was she scared?¬†

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I'm so sorry--I went through that with my mom, who died of breast cancer 30 years ago.  Hopefully her pain is managed.  She may be scared, but obviously she finds your presence comforting.  I'm so glad you can be there for her.  Sitting with my mom during the 2 months or so she was on life support was very, very difficult on all of us.  She eventually wanted the tubes removed, but once they started it became much more difficult to stop.  

Sending you all a hug.

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I'm so very sorry. My mom was not on life support but was intabated a few months ago after nearly choking to death due to her trachea stent. She was intabated for about 24 hours and was kept groggy the entire time.  When she would come to, her sister would ask her if she wanted me to come be with her and she would shake her head no.  Although I am unhappy that I did not immediately go to the hospital when I got the call, I am happy that I did not see my mom in that condition..she wasn't doing very well even before the incident.  So I can only imagine what you are going through.  What I would like to offer is what my mom shared with me about her experience.  And please do not think that I feel my mom's situation is even close to what you and your family is experiencing, I am just hoping that this message may help a bit.  

My mom was obviously heavily sedated during the time she was intabated.  When she would come to, she would panic for a second before she realized what was going on. She said it did not hurt, it was just uncomfortable and a weird experience. Then she would force herself to calm down and let the machine breath for her.  Once she did that, all was fine.  She said that although it wasn't pleasant, it also wasn't the worst thing in the world.  She was able to understand what was going on and would nod or write things down in response to questions.  It sounds like intabation looks worse than it is for the patient.  

Maybe this helps a tiny bit, maybe not. Sending you hugs.

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I am also very sorry.  

Normally, when someone is intubated, they are given anesthesia and sometimes the anesthesia causes confusion.  Therefore, I wouldn't know if she was in pain (not likely) or afraid (likely).  I was intubated as part of my treatment for a pulmonary embolism after one of my thoracic surgeries.  The induced coma state lasted about a week and when they removed the tube, I was displaying confused bordering on psychotic behavior.  My wife said doctors and ICU nurses told her it was a typical condition after anesthesia and intubation.  

More importantly, I don't have any memory of the embolism treatment or the crash cart ride to the ICU for that matter.  Evidently the anesthesia effects memory.  Ask the ICU nursing staff about what your mother may or may not feel.

Stay the course.

Tom

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Steff, that helps a lot. Thank you!  I sit and just hold her hand while I keep getting delivered bad news. Her platelet count is bad, they say if I notice any bleeding anywhere to alert them. I'm just waiting for someone to wake me up from this nightmare. Lexi, Tom, thank you. 

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Last night my mom went into afib and today she has rapidly declined neurological. They think she suffered a stroke but her condition is to critical to move her to do  ct scan. She has dolls syndrome where eyes roll back and pupils don't dilate, she doesn't move or squeeze hand. The Dr said it'd be cruel to not have her DNR. :( Dr said if we want to withdraw care they would understand. Idk what to do. 

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I'm so sorry.  Are there family members you can talk this through with?  If you have a clergy person you could talk with, that might be helpful in deciding what to do.  I think if it were I--either as the patient or as the caregiver--I'd be inclined to do whatever is needed to make her comfortable and beyond that, let nature take its course.  It is, however, a very personal decision, so I don't feel qualified to tell you what to do.

Hugs and warm thoughts.

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I'm sorry to hear about your mom's decline. You're facing some really hard decsions. Many years ago, my mom,  who had metastatic breast cancer and had declined further treatment, had a medical crisis that left her unable to make her own decision and so I was in a situation somewhat similar to yours, so I feel for you. I will keep you in my thoughts.

Bridget O

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Last night my mom went into afib and today she has rapidly declined neurological. They think she suffered a stroke but her condition is to critical to move her to do  ct scan. She has dolls syndrome where eyes roll back and pupils don't dilate, she doesn't move or squeeze hand. The Dr said it'd be cruel to not have her DNR. :( Dr said if we want to withdraw care they would understand. Idk what to do. 

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I meant to hit reply and accidentally hit report. I'm so embarrassed. I accidentally double posted also. I'm quit tired. Bridget, what were your experiences? How'd you handle it?

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I have siblings here with me. We are torn. Two of us want to keep fighting, and the other two want to remove ventilator. This is so hard.

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You must be devastated.  And on top of your devastation, you've got a very hard decision to make.  Even more complicated, it appears to be a collective decision and these are always much, much harder to make.  

Here is how I would approach a decision such as that facing you.  If it were my mother, I would be guided by the fact that she has end state disease.  At this point in time, the disease is not reversible and only progression towards death is the future state.  Medical science might prolong the progression but cannot stop it. 

I would think back over my mother's life and try and find clues in the way she lived to determine the way she wanted to die.  My mother was always "neat as a pin". She was obsessed with the idea that everything needed to have a place and if not in use, it had to be in that place -- immediately!  This obsession with organization was bested only by her desire to be properly groomed.  My mother's hair, dress, and appearance were always impeccable. She "dressed for bed" and dressed completely every morning before her first cup of coffee (and on finishing, that cup was washed, right away)!  I would look at my mother, connected to all the medical tubes and hoses, and realize she would hate looking like that.  So these traits would guide my decision.

I am the oldest of 4 brothers and each of us is different and has a different approach to our lives.  I would remind my bothers that an approach to our lives is not relevant in making a decision for our mother and her life. 

In life, there are but two certainties: birth and death.  Everything else including the time between these life milestones is uncertain.  Regardless of what you individually or collectively decide, your mother's end of life milestone is very near.  If her medical condition is irreversible, would she want to continue to battle?

I pray for peace for your mother and your family.

Stay the course.

Tom

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I can imagine that you are quite tired as well as devastated .

You asked about my experience with my mother and how I handled it. She had a major blood clot that cut off circulation to her leg. The doctors said that usually they would do surgery to remove the clot/repair blood vessels,  without it her leg would become gangrenous which would be fatal. In  her weakened state the doctors  doubted she would survive surgery.They considered her imminently terminal and said she could not live more than days, maybe a week or two. A little later, they actually suggested amputating her leg to avoid pain of gangrene . This made no sense to m, since they didn't think she could survive surgery. .My mom had metastases throughout her body, including her brain. At this point she was confused, conscious some of the time, fading in and out.

A few ;months before, she had decided to stop her chemo because she did not want to become more disabled by it.She had lost her ability not only to walk, but to support her weight for transfers, and she was losing the ability to use her hands.  She knew that discontinuing treatment would greatly hasten her death and she had at that time made and paid for her own funeral arrangements  I  considered this in making a decision to say no to any surgery. 

Fortunately there was a really good, small hospice house in her city ( I wasn't living in the area) and I arranged for her to go there. The hospice people were really wonderful. They let me sleep on a couch there so I could be by my mother in her last few days They were able to keep her pain free and she died peacefully 5 days later. 

I hope for peace for your family whatever you decide and whatever the outcome. Please don't let differences between  you and your siblings cause you to  hurt each other or become estranged. You all need each others support right now.

Bridget O

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