The ICU experience from a loved one's perspective

Posted by Annie Johnson @andreab, Sat, Jan 25 3:29pm

Critical illness has a very broad reach. Not only is the patient directly affected, but also loved ones and caregivers. With this discussion, I’d like to provide a space for loved ones, family members and friends who have experienced this side of the ICU – A place to share and connect with others who have been there.

What’s your ICU experience? What surprised you about being with a loved one who was admitted to ICU? How are you doing now?

This is my first time of having a close family member in ICU. I am exhausted and chose to stay home today in order to prepare for my husband's doctor appointment this afternoon.

I wish I could be in both places at once. We have a young teenager at home, so I also feel I should be here for him. To have some semblance of normalcy.

My daughter is on a ventilator. She is recovering from pneumonia and also has CHF.

@andreab, do you have any advice for me? I talk to her, because I believe she can hear me. Not all the time. But sometimes her eyelids flutter. As if she can't quite wake up. She's sedated. They want her to rest.

Mamacita Jane

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@annie Johnson, so what do you suggest I do when I have evidence of neglect on the part of two nurses?

If I sue the hospital, her future treatmemt is at risk at this same hospital.

The hospital was not neglectful, just the two nurses who failed to care for my daughter, resulting in her being placed on a ventilator due to pneumonia.

Any thoughts?

Mamacita Jane

REPLY

@mamacita, rest is a great healer for both you and your daughter. It is so hard to be the main caregiver to all family members. I think talking to your daughter is good for both of you. I'm tagging @andreab to bring her into this discussion too.

Mamacita, I hope you are having a long and restful sleep tonight away from the beeping and constant activity of the ICU room. Will you return tomorrow? Have you been sleeping there?

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@mamacita

@annie Johnson, so what do you suggest I do when I have evidence of neglect on the part of two nurses?

If I sue the hospital, her future treatmemt is at risk at this same hospital.

The hospital was not neglectful, just the two nurses who failed to care for my daughter, resulting in her being placed on a ventilator due to pneumonia.

Any thoughts?

Mamacita Jane

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Oh, @mamacita. I'm so sorry to hear that you have lost confidence in the care your daughter is receiving at the local hospital. Have you asked if there is a department of patient relations, sometimes called office of patient experience? Most hospitals have them and can help mediate the immediate issue and, more importantly, avoid further potential harm.

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@colleenyoung

Oh, @mamacita. I'm so sorry to hear that you have lost confidence in the care your daughter is receiving at the local hospital. Have you asked if there is a department of patient relations, sometimes called office of patient experience? Most hospitals have them and can help mediate the immediate issue and, more importantly, avoid further potential harm.

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Hello @mamacita

How very stressful! I do hope you follow up on Colleen's. @colleenyoung, suggestion about contacting the hospital's patient relations office. It might bring to light a problem and when the hospital addresses that problem you might also save other patients (and their families) from a similar experience. Wishing you and your daughter a better day today.

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@hopeful33250

Hello @mamacita

How very stressful! I do hope you follow up on Colleen's. @colleenyoung, suggestion about contacting the hospital's patient relations office. It might bring to light a problem and when the hospital addresses that problem you might also save other patients (and their families) from a similar experience. Wishing you and your daughter a better day today.

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@teresa, yes ma'am. I am definitely speaking with the patient advocate. Im sorry I haven't got back to you guys sooner.

I had to take a day off to take care of some business. Stuarts hand is swollen and he cannot drive one handed. So guess who gets to be the chauffer.

I jusr channel my "inner Lizzie" and forge ahead. (Lizzie is my youngest daughter and learned how to drive a bus in the Army)

This is rough. I'm so appreciative of all of you.

Love and light,
Mamacita Jane

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@mamacita We're here for you!

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@mamacita

@teresa, yes ma'am. I am definitely speaking with the patient advocate. Im sorry I haven't got back to you guys sooner.

I had to take a day off to take care of some business. Stuarts hand is swollen and he cannot drive one handed. So guess who gets to be the chauffer.

I jusr channel my "inner Lizzie" and forge ahead. (Lizzie is my youngest daughter and learned how to drive a bus in the Army)

This is rough. I'm so appreciative of all of you.

Love and light,
Mamacita Jane

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@mamacita how are you and your daughter doing this evening?

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@colleenyoung , I am scattered, but greatful. She is still on the ventilator due to the seriousness of her pneumonia.

But she is getting better. Its just a slow process. Her lungs were not in great shape to begin with.

Thank you for all your support. Connect is family.
Love and hugs,
Mamacita Jane

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@colleenyoung

@mamacita, rest is a great healer for both you and your daughter. It is so hard to be the main caregiver to all family members. I think talking to your daughter is good for both of you. I'm tagging @andreab to bring her into this discussion too.

Mamacita, I hope you are having a long and restful sleep tonight away from the beeping and constant activity of the ICU room. Will you return tomorrow? Have you been sleeping there?

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@teresa, Volunteer Mentor, and @colleenyoung, we are back in rhe ICU waiting room. My daughter from GA is here, and my husband, and our teen.

They won't let you spend the night here.
I played hooky yesterday and rested. Recharged my batteries.

They are still trying to get her off the ventilater. But her oxygen level goes so low. Her lungs are so weak. Her muscles are weak.

But she is in good hands.

Thank you all for your kind support.
Love and light,
Mamacita Jane

REPLY
@mamacita

@teresa, Volunteer Mentor, and @colleenyoung, we are back in rhe ICU waiting room. My daughter from GA is here, and my husband, and our teen.

They won't let you spend the night here.
I played hooky yesterday and rested. Recharged my batteries.

They are still trying to get her off the ventilater. But her oxygen level goes so low. Her lungs are so weak. Her muscles are weak.

But she is in good hands.

Thank you all for your kind support.
Love and light,
Mamacita Jane

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Hi @mamacita, I'm glad you have family members by your side for support and that your confidence in the staff is restored. It is so important to recharge your batteries.

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@mamacita

@teresa, Volunteer Mentor, and @colleenyoung, we are back in rhe ICU waiting room. My daughter from GA is here, and my husband, and our teen.

They won't let you spend the night here.
I played hooky yesterday and rested. Recharged my batteries.

They are still trying to get her off the ventilater. But her oxygen level goes so low. Her lungs are so weak. Her muscles are weak.

But she is in good hands.

Thank you all for your kind support.
Love and light,
Mamacita Jane

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I am so glad that you were able to take yesterday off and recharge, @mamacita, that was a good thing to do. I am so sad for your daughter that she is in such a weakened condition. You, of course, know that my prayers are with your daughter and the rest of your family. You are loved and cared for, @mamacita~

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@teresa, Volunteer Mentor, my daughter coded last night. She had CPR for 40 minutes. This morning she grasped my youngest daughters hand ever so slightly.

I almost had a meltdown right there in the ICU. But I caught myself and refused to harm myself. It would have just confused the situation to see a grandmother type beating her head with her fists.

That has not been a part of my Autism experience for many years.
Bur this pain goes so very deep. My child deserves better. And it hurt so badly to see her so helpless and to know there could be cognitive impairment.

So we are back to square one. Worse than square one.

We can do this. We have no choice.
Mamacita Jane

REPLY
@mamacita

@teresa, Volunteer Mentor, my daughter coded last night. She had CPR for 40 minutes. This morning she grasped my youngest daughters hand ever so slightly.

I almost had a meltdown right there in the ICU. But I caught myself and refused to harm myself. It would have just confused the situation to see a grandmother type beating her head with her fists.

That has not been a part of my Autism experience for many years.
Bur this pain goes so very deep. My child deserves better. And it hurt so badly to see her so helpless and to know there could be cognitive impairment.

So we are back to square one. Worse than square one.

We can do this. We have no choice.
Mamacita Jane

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Oh dear, @mamcita. No one, no parent should have to experience this. It is excruciating to be an observer on the sidelines and to be rendered feeling helpless. But you're not helpless. You are there. You are present. And this means more than you can imagine right now. Be your daughter's calm in the midst of the activity of the health care professionals, the machines, the tubing, etc. She knows you're there.
Yes, you can do this. You're making good choices. You didn't beat your head with your fists. You didn't have a meltdown. You took care for you and for your daughter.

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@mamacita

@teresa, Volunteer Mentor, my daughter coded last night. She had CPR for 40 minutes. This morning she grasped my youngest daughters hand ever so slightly.

I almost had a meltdown right there in the ICU. But I caught myself and refused to harm myself. It would have just confused the situation to see a grandmother type beating her head with her fists.

That has not been a part of my Autism experience for many years.
Bur this pain goes so very deep. My child deserves better. And it hurt so badly to see her so helpless and to know there could be cognitive impairment.

So we are back to square one. Worse than square one.

We can do this. We have no choice.
Mamacita Jane

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@mamacita my friend, I can just barely imagine how you must have felt to see your daughter so very ill and now to know that your husband is also battling a serious infection. Call on all of your friends and family. You need the support of everyone who is available. You are strong, but none of us is strong enough to deal with all of this alone! Take care of yourself, you are worth it!

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