My mom is dying and I'm not ready for it

[Feelin Frisky]

I thought I'd have some warning, some chance to square things with her but she's on a respirator and can't communicate. It's so frustrating. Her brain is fine, her heart good. But her lungs aren't cooperating and I wish I could do something. It was my birthday this past Wednesday and I got a call from my sister saying my mom got nauseous and went to the emergency room. Turns out she had a kidney stone attack. But the retching with pain caused her hiatal hernia to rupture and her stomach to invade her chest cavity partly collapsing a lung. She could not come out of anesthesia which was given for stent implantation and has been on the breathing tube since. Terrible thing that. When people who have that inside them come to consciousness their impulse is to gag and reach to pull it out. But if they pull it out, they die.

 

I'm the eldest of her children and feel like our whole family life is about to change in a harsh way I'm no way ready for. I don't know where this leads--how long does this go on? How do they get this tube out? Can they operate and repair her innards if she's already compromised? Any medical people here or persons who have had the breathing tube drama around them who might venture some advice?

[darkmoon]

i can say hospitals do put tubes everywhere, and i do mean everywhere, a patient can get used to such conditions, but the nurses should be telling you stuff

[Els]

I don't know what to say, and I can't answer any of your questions reliably, but I'm so terribly, terribly sorry you're going through this, FF. {{hugs}}

[amaysngrace]

I'm sorry Frisky for what you're going through.

 

I would ask her treating pulmonary specialist any questions that you may have about her condition. Have a sibling there too for better understanding in case one of you misses something that was said.

 

XO

[cerridwen]

I don't have medical advice, Frisky but I've always liked you very much; I'm sorry you're going through this.

 

I almost lost my mom recently too so your post resonates with me.

She's been illl for many years so I shouldn't have been surprised.

When the moment came though, the last thing I felt was "prepared."

 

If you have friends close by, or even at a distance, reach out.

Even some LS friends kept me together through the trauma, F.

Keep posting updates, please; both about how she and how YOU are doing.

 

Best.

[writergal]

So sorry you have to go through this, Feelin Frisky. (Happy Belated Birthday too). I agree with the others who said you should call your mother's pulmonary specialist with your questions, as he/she will know more than we do.

 

That said, know that you have a support system here on LoveShack. ((hugs))

[freestyle]

Sending thoughts of support your way, Frisky.

 

I'm very sorry you're going through this. When a parent gets sick, it can make us feel like a vulnerable child again, even if we're well into adulthood.

[StrangeBehaviors]

I've been with others in different hospitals multiple times for long stays over the last several years. From my experience:

 

1) It's not uncommon for one bad health thing to lead to another just as you describe happening with your mother.

 

2) Make an effort to keep a relative, friend, church member, or whatever else there as much as possible. Nurses and caregivers are human & mess up all the time or just can't be there for everyone. Someone there is kind of like them (nurses) having a checks & balances in their head for that room. Plus the people there can stay informed, ask questions, and pass the information on.

 

3) There are not enough actual doctors anywhere. They typically make rounds on floors. Ask, ask, ask the nurses when the actual doctor will make his rounds. Then you can get the most information from the doctor and an idea of where you stand. Nurses are not allowed to speculate on a prognosis.

 

Every person you know is going to pass. Be prepared for that. I say that so as not to give you any false hope. However, I have seen multiple times people that I was sure were going to die, multiple life threatening problems, in and out of consciousness, with multiple tubes coming out of them and not eating anything at all......that are home right now.

 

Sending positive thoughts your way.

[Feelin Frisky]

Thank you friends. It seems she has pneumonia too and that is a killer. This may go on for a week or two. It so sucks because she's in there and herself--she's just being kept unconscious because the breathing device is unbearable to a conscious person. So I'm just left wondering what next and when. Will the pneumonia go away and when, will they have to operate on the hernia? will there be more infection? how does this all work--the aspiration of stomach acid and how do they get that crap out of your lungs? She's a war horse but suddenly totally incommunicado. Thanks for your well wishes. Very sad for me and all my sibs and their kids.

[StrangeBehaviors]

An "induced coma" is not a bad thing provided vitals are monitored and stable.

 

But it's frustrating for loved ones because you want them to communicate with you.

[writergal]

Thank you friends. It seems she has pneumonia too and that is a killer. This may go on for a week or two. It so sucks because she's in there and herself--she's just being kept unconscious because the breathing device is unbearable to a conscious person. So I'm just left wondering what next and when. Will the pneumonia go away and when, will they have to operate on the hernia? will there be more infection? how does this all work--the aspiration of stomach acid and how do they get that crap out of your lungs? She's a war horse but suddenly totally incommunicado. Thanks for your well wishes. Very sad for me and all my sibs and their kids.

 

Induced comas are used for patients on ventilators like your mother. The poster Strange Behavior gave you good advice. Have someone close to you at the hospital (in shifts) to advocate for your mother's care, to ask questions, and keep the nurses and doctors responsible for delivering excellent care to your mother while she recovers from her hernia injury during her induced medical coma. The pneumonia is a common side effect (from what I've read online) for patients in comas. But don't worry because the nurses can give your mother antibiotics via IV. Doctors will operate on her hernia while she's in a coma, and then wake her so she can recover.

 

It's also thought that people in comas can hear everything happening around them. So, when you're there visiting, talk to her, read her the news, or a book, or update her on her grandchildren's activities. Have everyone talk to your mother. They say that patients recover a lot quicker, when people talk to them. Here's a story from The Telegraph about it. 'Locked in a coma, I could hear people talking around me' - Telegraph

 

And here's a book excerpt from a patient who describes their coma experience. Be Extremely Gentle To Someone In The Coma : I Was In a Coma Story & Experience

[Robert Z]

Just to say sorry FF. I have been there and know the feeling of helplessness and frustration that you are feeling.

 

And going back to SB's point, it is amazing what people can survive. If there is life there is hope.

 

Losing your family and friends is one of the most difficult parts of getting older. Almost everyone in my extended family who was older than me is gone now.

[whichwayisup]

I'm sorry to hear this, how awful and stressful for you all, including your mom.

 

I have no medical advice, but I agree with the others, it's amazing what people can come out of. Your mom is a strong woman..With a lot of love, prayers, good thoughts, positive energy around her, that can make such a difference.

 

Do ask the Dr all the questions you've asked here.

[MrCastle]

Although I can't offer any advice, my thoughts and prayers are with you and your family. God Bless them and your mom. Sorry to hear about this.

[carhill]

My sympathies. This is a tough time. I didn't note any mention of a DPOA health care. Is that in place, along with advance directives?

 

Yeah, I've been there. After brain surgery, my mom was in an induced coma for almost a week while they got her ICP (fluid pressure in the brain) and swelling down. It was tough to see her on the vent and with a tube running out of her skull into a container, for sure. They'd bring her up every 48 hours or so to see if she'd fight the vent, then take her back down. Eventually, she stabilized , hit med-surg and then was in in-patient rehab for a month, learning how to do everything, including eat and poop, again.

 

Your mom's situation is different. I'm hearing issues with anesthesia as well as a collapsed lung and pneumonia. That last one is a bugger. Hope she can beat it.

 

Since she's in ICU, visiting is usually somewhat limited but still it pays to, as suggested prior, have someone there advocating, and preferably the DPOA during doctor hours to consult on condition and provide directives.

 

Most hospitals have in-house counselors/social workers if you need someone to talk to.

 

Spend some time on the internet and learn about her conditions, then ask questions of the doctors when consulting with them.

 

One day at a time. It's easy to get overwhelmed. My sympathies...

[MuscleCarFan]

That really sucks and I am sorry to hear that. My father died from stage 4 brain cancer when I was nearly sixteen and it was quite depressing. You have my sympathies.

[quankanne]

so sorry to hear this Frisky ... your family is especially in my prayers tonight.

 

con muchos abrazos,

quank

[dreamingoftigers]

So sorry to hear this FF,

 

My brother was in ICU following a heart attack and toxic overdose (due to physician error).

 

His kidneys shut down, he got pneumonia, they said he would need a pacemaker and breathing tube for life IF he survived. They said his chances were less than 1%. They offered to make him comfortable.

 

My father (who has coincidentally never made anyone comfortable in his whole life) refused.

 

He survived. They put the pacemaker in one day, and took it out the next when his heart rhythm stabilized. He began breathing on his own. His kidneys started functioning. The pneumonia passed.

 

He life is far from perfect but eight years later, he is still here.

 

Never give up. Prepare for the worst, but don't give up.

 

May whatever you cling to for faith or hope bring you some.

[Feelin Frisky]

My sister deserves a lot of credit. She has been at the hospital almost non-stop since last Tuesday. I can't spend that much time there myself and I don't trust hospital staff to always be on top of things. So she's had at least one of us there all the time since this started. Sibs from California and Florida are here today but the news yesterday about pneumonia seems to mean that this will be saga for a couple of weeks. Thanks for all your warm wishes and prayers. It makes me tear.

[Lobouspo]

One thing FF, my mom was recently in the hospital and I found we really had to be proactive and direct with hospital personnel, as its so easy to just get kinda lost in the shuffle. Thoughts and prayers are with you.

[SouthernDamsel]

Adding prayers for your mother's recovery. And please make sure that you and your siblings get enough rest and take care of yourselves as well. It can be quite exhausting being an advocate for a loved one in the hospital.

[Fugu]

I'm sorry Frisky.

[cerridwen]

How are you, FF?

[Mme. Chaucer]

Hi Frisky,

 

I hope you're okay today.

 

You know I'm with you.

 

I realize that you don't believe in "super nature" stuff, but regardless, I hope you will sit with your mom in her room, if she is still with us today, and say whatever you need to say to her even if she cannot hear you and respond to you.

 

I still think it's valid and important for you to do it, if you can.

 

It's pretty weird how death is the absolute and definite thing that every one of us humans have in common, yet it is the most unacceptable thing.

 

Most of us will live to see our parents depart this world, and it seems like it should be natural. Even if it is "natural," and we possibly should be expecting it, there is NO way to be prepared for the way the losses make us feel, or for the changes in family dynamics when the parents are no longer here.

 

Our own parents probably went through it too.

 

Take care of YOURSELF.

 

XO

[Feelin Frisky]

She had a close brush today. The day before yesterday they unexpectedly removed the breathing tube and she came back after a week of unconsciousness. We were all jubilant. Then today she almost flat-lined and had to be resuscitated. So the joy is gone. Everything that's been wrong with her seems to have all intensified at once. I'm still not prepared for this--I expected her to be around for at least another ten years. Please mom, get well.