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lisamichele2000 Asked December 2012

Mom is in a very deep sleep on Ventilator..Is this normal?

Mom had gotten pneumonia november 11,i had called 911 after she started to hallucinate and act strangely..she was alert, and aware, although confused at times.. - then co2 levels rose drastically the next morning and she was admitted to hospital.. and was intubated..she was alert after this, she couldn't speak - but mouthed words... she had difficulty being weaned off of the tube in her mouth - her levels rose again.so they needed to perform tracheostomy..she was sedated several times..they said they were afraid she would remove tube... and then after vent operation, they had to surgically put feeding peg tube in her stomach so that she could eat, and also be transferred from hospital....so 2 operations in the space of 5 days.. and antibiotics to knock out the infection...the hospital could do no more for her.. this was one month after arriving in hospital.. she became lethargic at times, and then woke up right before she was transferred to Nursing Home/Rehab..again she was given something to sedate her for transport.. she has been in a very deep sleep ever since then.. she arrived at NH dec. 11, and woke up only once to my knowledge where she actually spoke some words, and acted as if she knew who i was and that i was there..basically acted like she was there.. not out of it.. that was on the 8th right before going to NH..since then, only recently she opens her eyes..i believe she tries to wake up.. but can't for whatever reason.. maybe she is exhausted, or she is in the healing process.. but only the last few days i have seen any improvement in her consciousness at all.. yesterday she didn't open her eyes ( and once or twice turned her head at the sound of my voice) - but she started to move her lips and smack them..not awake..but looking more like she is really sleeping.. not in a semi unconscious state.. is this normal? does the ventilator have this effect on people? she is 84.. has emphysema..stopped smoking 12 years ago.. but her lungs could not get strong ernough to breath on her own.. hence the vent, and the NH.. i'm hoping she will wake up.. the only thing wrong with her is that she can't breathe on her own..why won't she wake up?? does anyone have any similar situations or advice?? i am her only daughter. i don't know what to do.. i have to start making some long term decisions and i don't know where to begin...

GardenArtist Sep 2017
Hajar, lots of questions, but also lots of complicated medical issues. Is your mother still on a ventilator, still being fed by PEG tube? I'm assuming so if she's not able to wake up. And being sedated for 12 consecutive days probably factors in as well.

Was the water from a pleural effusion? Is she a diabetic? Type I or II?

I'm not a medical person so I'm just asking from experience, but it does sound as though her body is still undergoing some extreme and complicated challenges for recovery.

In my personal experience, I've only seen one person in a similar state, and that's my father. He was medically induced into a coma and remained so for about 2 weeks until the ratio of inhalation and exhalation of air was normalized. He did have a difficult time coming out of the coma. He was 85 at that time.

I would think that with all your mother has gone through, her body may just not be ready and she's still sleeping b/c she needs to be. That sounds like a very nonmedical conclusion, but sometimes the issues are more along that line than something more complex.

What happened in Cancun that brought on this emergency?

BTW, knowing the SE Michigan medical facilities fairly well, if she's at DMC Receiving, she's at a good hospital. Inconvenient and in a bad area, but my father was treated there for a traumatic finger amputation. I had some problems with a few nurses, so if you do, go to the charge nurse immediately, or ask to see and confer with a hospital administrator.

Could you explain this: "I noticed 5 years ago, 1-year ago.. " Did this happen 5 years ago and 1 year ago as well? If so, what were the causes, and the outcome?

I think the fact that she's responding by wrinkling her nose or opening her eyes is a really positive sign!

Is she by any change on a monitor that measure brain activity? I watched this when my father was in a coma. I talked to him, played music on a portable CD player, and watched to see if his brain functions increased. I also sang some of his favorite church hymns.

He responded; his brain function increased. And the infectious disease doctor as well as a nurse confirmed. They recognized that he was responding to music, even while in a coma.

You might try that, playing music for her.

Hajarkayat123 Sep 2017
Deep Sleep.....I'm going through the same situation now with my 82-year-old mom. Not getting up, she's been off of all drugs, was sedated for 12 days, tube, ventilator, dialysis, drained water out of both lungs had pneumonia..2 liters of water drained yesterday. So why isn't she waking up?? TIME is all I here and her being older takes time because the meds are stored in her fat, So for any of you...is it possible for her to wake up. It has been a week now after Monday's sedation because we flew her on-air ambulance Cancun Mexico to US Detroit. moves her lips, the nurse that washed her said she wrinkles her face when they wash her, eyes open few times.I noticed 5 years ago, 1-year ago.. is this normal..waiting game. What do I do??? Hajar Kayat

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GardenArtist Aug 2016
Dora, if it's any consolation, my father was on a ventilator and in the induced coma for a few weeks. An ICU nurse and a pulmonary doctor told me I should expect that he wouldn't survive, but if he did, he wouldn't be able to walk. I told them they didn't know my father!

I fought their prejudice and willingness to just give up on an 85 year old man. It wasn't the first time I challenged the "quitter attitude." Eventually, 7 months later, Dad came home, after being decannulated and having speech therapy. A few months later he passed a swallowing test and began eating real food.

He'll shortly celebrate his 98th birthday. He still walks and causes me great anxiety when he's out walking in this heat.

I read all I could on his situation and asked doctors and nurses a lot of questions. By the time he came home, I had two 3 ring binders filled with medical information downloaded from online.

Your mother may be sleeping b/c that's what her body needs, or b/c of a combination of meds, etc. Even after Dad came out of the coma, he slept a lot, especially when he was hemorraging internally.

So, don't give up; hang in there! Learn as much as you can about all the complicated and interactive situations and ask as many questions as you feel necessary.

And just keep holding your mother's hand when you visit her. Although we don't really know how much she's sensing now, I do believe that the power of touch can communicate words that can't be heard.

DoraBelle87 Aug 2016
Thank you for responding to my question it's just the same thing everyday test results come back clear everything's fine they keep saying they don't know why she's stuck asleep I was reading another post on this site where another girl was going through the same thing her mother ended up passing away and being put in a nursing home and not much solution was found I don't want that to happen to my mom. I just thought I would post in case someone else has been through a similar situation.

GardenArtist Aug 2016
Dora, there are a lot of things happening when someone is in a situation similar to your mother's. It may seem as though the doctors are "playing guessing games", but these might actually be their attempts to find a solution to the situation, or wait until various body levels stabilize.

She can't be removed from the ventilator until certain medical conditions are met, specifically, she has to be able to breathe on her own. And apparently that isn't happening right now, b/c of her carbon dioxide level. So they can't "unsedate her and take her off the vent".

This is too complex a situation for anyone here to diagnose. There are some medical people, but primarily this is a forum of caregivers. And w/o more information on SAT rates, CO2 level, etc., no one can really second guess the doctors. The medical people could probably offer more insight into the situation to make it more understandable though.

In the meantime, perhaps you could try to make her more comfortable and relaxed, just by sitting with her, holding her hand, talking soothingly.

When my father was intubated and in a chemically induced coma, I brought a small portable CD and played his favorite songs for him. I watched the meters monitoring his various levels; I can't remember the name of the instruments these 13 years later. But some of the ICU nurses watched the change when I played the music, and they agreed he was responding.

Music does have soothing capabilities; perhaps it might help your mother until the medical issues are stabilized.

Have you had any really serious discussions with the doctors to address your concerns? That's the first thing I would do to understand more the methods they're using to treat her.

DoraBelle87 Aug 2016
My mom is in a similar situation. Can you please comment if you still have access to this account. I know its 3 yrs later. My moms carbon dioxides levels were very high and they think she might have taken a double dose of valum and sleeping meds and went to the hospital, and is on a ventilator. They lower her sedation every morning and try to get her to blink, stick her tongue out, and squueeze her hand and when they cant they resedate her and try again the next day. She has lung issues. But has always been fine. They need to unsedate her and take her off the vent and let her body wake up but they wont take her off bc of the carbon dioxide level. Anyone know what is wrong? Drs are playing guessing games its awful. My mom cries and open her eyes at me. She is miserable and cant communicate but i know she is there. It is breaking my heart. Any advice would help.

lisamichele2000 Jan 2013
Thank You Ba8alou - i know..

BarbBrooklyn Jan 2013
Michele; Be well and strong; remember that YOU are in God's hands too. Hugs!

lisamichele2000 Jan 2013
well.. the battle is almost over my friends.. Thank you all for your support and kind words.. Mom has a week or two left i believe..her kidneys are failing now..her blood pressure plummeted and was given dopamine to raise it back to normal levels.. well it worked, but in the process - her kidneys began failing.. she is in god's hands now.. I was told that nuerologically she will not recover from this event.. I will sign the DNR today.. I tried my best.. I really did.. but this was a battle we couldn't win Thank you all again... michele alyce brooklyn, n.y.

beachybirdie Jan 2013
Marymar,

I am so sorry for your loss and for the hard time you went through with your mom. your advice to lisamichelle is right on. Make peace with mom, even though she is unconscious. Let her know how much you love her, let her know you are doing your best to look out for her.

marymar Jan 2013
(PS, I am an only child too and had to take my mother off of life support 2 days ago. she passed in less than an hour after 4 days in intensive care for double pneumonia. It was devastatingly hard, but absolutely te right thing. she would not have wanted to even gone as far as the Drs did, but there seemed to be hope... a roller coaster of bad news/good news... but each time, the good news was smaller and smaller and more damage remained.

It was time.

marymar Jan 2013
((hugs)))
I agree wholeheartedly that quality of life is the most important thing. Make peace with her, even if she is unconscious.

BarbBrooklyn Jan 2013
lisamichele; have you asked any of the docs what their prognosis is about your mom's having any quality of life after this treatment? QUALITY OF LIFE is the important thing to ask about...it's not just about being alive, it's about being alive and being able to partiipate in life; that's something that alot of docs don't get. You need a geriatric doctor. Recently, my 89 year old mom, with Cong. Heath Failure but not much else went to the hosp with a pleural effusion (buildup of fluid around her lungs). They did a bunch of tests and brought in an oncologist who was recommending a bone marrow biospy (after they'd done a full bone scan and chest/AB CAT scan--so no advanced cancer). Bone marrow biopsy--Hell no! As the geriatrician said to us, don't so the test if you already know that you're not going to do the treatment. My mom was not going to consent to radiation or chemo; So whatever tests they ask for, ask what the possible treatments are. Consider if your mom would want that level of treatment, and if you are comfortable with putting her through that for (and ask the docs this question) What quality of life afterwards. and talk to Hospice. Again, sorry for your pain and angst, but I think you've come to the right place for good advice. I've always gotten it here. Hugs, Barbara

lisamichele2000 Jan 2013
yes.. i asked the doctor if she was sedated.. he said no no.. but the nurse checked the computer and saw Ativan.. only 1 mg .. but to an 84 year old who is in mom's condition thats alot.. that is what she was given previously as well..the first time she was in the hospital last month they said she was agitated and were scared she would pull out the tube.. one time i think they gave her morphine!! my mom only took advil at home.. she doesnt have the tolerance for heavy drugs...i'm sure thats why she was so out of it.. how can they possibly find out how someone is, if they keep knocking them out?? at this point i'll be happy if mom survives all of this... then i'll deal with waiting for her to wake up..im sitting here so jumpy.. every time the phone rings i panic... they are giving her a saline solution but her arms are swollen.. won't they swell more from this??

lisamichele2000 Jan 2013
she has a feeding peg tube.. a tracheostomy tube in throat.. an iv in arm with sodium chloride drip...i asked the doctor what would make this happen.. evidently it is not connected to her previous breathing problem.. ..he said sometimes in older people things go wrong.. could be a hormone not present SIADH..and maybe her bone marrow is not producing enough hemoglobin...she does not have a living will.. i am the closest relative and only child...i have POA on the banking stuff...im paying her rent and bills as if she was coming home.. i now realize this won't be happening.. now i will have to figure out waht to do with her apartment.. that's low down on the list.. i thought she was finally ok in the nursing home.. boy was i wrong...and when she gets better and they send her back there.. will this all happen again????

burritokid Jan 2013
@beachybirdie, I'm glad you mentioned Ativan, my mom was given that. She was taking Zoloft and they quit that cold turkey which is what you're NOT supposed to do and I think that contributed to the plethora of health issues that she did not have before she went into the hospital for "routine" surgery. "she's only on a very tiny dose" - the hospital staff used to tell us that too. all lies. Hospitals don't care about the elderly and do everything to keep from taking care of them. So sad that we all are on here having to deal with the trauma of our loved one declining and hospitals making it worse.

lisamichele2000 Jan 2013
she was given 2 units of blood and now has IV sodium drip.. they have to do it slowly.. i can't believe this is all happening... her arms swelled up.. but they say she might possiblt be dehydrated.. how can this be?? she had a feeding tube with food and water mixture..i saw it.. water is i think slowly going away in arms.. this is a nightmare.. my poor mom... she is back to sleep.. but i think this time it might be better for her to sleep through this new torture..... i will be happy now for her levels to stabilize.. this whole thing doesnt make sense....i am so stressed out i couldnt even visit tonite.. i called a few times.. she is resting comfortably.. levels are slowly rising...all i can do is sit back and wait.. i feel so powerless....

lisamichele2000 Jan 2013
she was given 2 units of blood and now has IV sodium drip.. they have to do it slowly.. i can't believe this is all happening... her arms swelled up.. but they say she might possiblt be dehydrated.. how can this be?? she had a feeding tube with food and water mixture..i saw it.. water is i think slowly going away in arms.. this is a nightmare.. my poor mom... she is back to sleep.. but i think this time it might be better for her to sleep through this new torture..... i will be happy now for her levels to stabilize.. this whole thing doesnt make sense....i am so stressed out i couldnt even visit tonite.. i called a few times.. she is resting comfortably.. levels are slowly rising...all i can do is sit back and wait.. i feel so powerless....

lisamichele2000 Jan 2013
i am trying to stay connected to respond..im sorry it took so long.. now it has gotten so much worse.. ..i believe she was finally coming around.. on the 31st i visited and called her name and she turned her head and opened her eyes.. yes she was given Atavan several times in the hospital.. and 2 operations anesthesia... after i left on new years eve i thought she was doing well.. her color was good.. eyes open.. got a call at 10 pm.. doctor read her labs and was sending her to hospital.. sodium dangerously low... hemoglobin too.. now she is sedated with atavan again.. and back in the same vent unit... i feel so alone.. thank you everyone for your hugs and good wishes.. i will do this multi part so it will post...

lisamichele2000 Jan 2013
i am trying to stay connected to respond..im sorry it took so long.. now it has gotten so much worse.. ..i believe she was finally coming around.. on the 31st i visited and called her name and she turned her head and opened her eyes.. yes she was given Atavan several times in the hospital.. and 2 operations anesthesia... after i left on new years eve i thought she was doing well.. her color was good.. eyes open.. got a call at 10 pm.. doctor read her labs and was sending her to hospital.. sodium dangerously low... hemoglobin too.. now she is sedated with atavan again.. and back in the same vent unit... i feel so alone.. thank you everyone for your hugs and good wishes.. i will do this multi part so it will post...

lisamichele2000 Jan 2013
thank you everyone for all of your help and support,, it has gotten much worse..she was just starting to come around i believe.. i called her name on the 31st when i came in, and she turned her head and opened her eyes.. still couldnt communicate, but i felt she was coming around.. the next night lab tests came back,, her sodium levels were dangerously low and her hemaglobin levels were not good either.. on new years eve iafter i had already been there and thought she looked good.. her color was good.. ,,her eyes open.. the lab tests were read and the doctor advised she had to be sent to hospital!!!! back to the same vent unit.. had 2 units of blood... now she is sedated with atavan..i asked the doctor - he said not sedated...but the nurse checked the records and said yes she was.. i cant believe this is happening.. she is right back in the sleep state ..but they are worried she could have a seizure because of the salt levels so they want her calm and not agitated.. ..i believe initially the sleep was because of the sedation and anesthesia.. now i will be happy if she just sleeps through the iv sodium drip and blood to get her levels out of danger zone.. im sorry it took so long to re-post... my connection is terrible at home... thank you so much for hugs and well wishes.. i feel so alone

Corinne Jan 2013
I am so sorry you have having such problems! First, find out if Mom has a living will. Second, find an Elder Care Attorney and present these problems to him/her. The advice will help you plan your next steps. If it seems that Mom cannot get well, by all means, get Hospice envolved. They are wonderful at helping you as well as giving a time table for Mom's future. God bless you and Mom. Sending hugs. Corinne

konacaregiver Jan 2013
One more thing that I have noticed since my mom is also in a nursing facility at the moment is that when my mom smacked her lips it meant that she was thirsty and needed something to drink. Is she on IV fluids? If not, they need to wake her up so that she can get proper nourishment.

konacaregiver Jan 2013
Very very important as others have said, DEMAND to know what meds your mom is on and how much and how often the dose. Get yourself on her health care directive AND her power of attorney. Immediate family members DO have a lot of CLOUT in making decisions even decisions that tell them to STOP giving her certain drugs that are doing more harm for her than good. Always remember that hospitals and nursing homes will protect themselves FIRST from any liabilities even it it means that the patient is put at risk. That is when YOU need to step up and be your mom's protector and advocate on her behalf. All the best to you and your dear mom.

beachybirdie Jan 2013
Forgot to mention that the popular sleep drug, Ambien, is also a drug of this kind.

beachybirdie Jan 2013
I can not say this strongly enough...please forgive me while I shout it...FIND OUT WHAT MEDS THEY ARE GIVING HER.

I just found out they were giving my mom an anti-anxiety med 24-7 at her ALF. I would come to see her, she looked like she was near death. They said "she's only on a very tiny dose". They told me "it leaves the body in fewer than 6 hours".

All untrue.

If they are giving her benzodiazepines, it is VERY DANGEROUS for you. This class includes drugs like Xanax (alprazolam), Ativan (lorazepam), Klonopin (clonazepam), Valium (diazepam). This class includes the drug known as "date-rape" (Rohypnol). Others are ProSom (estazolam), Dalmone (flurazepam), Restoril (temazepam) and Halcion (triazolam).

Many of these drugs are actually very dangerous for elders;

They gave it to my mom every 8 hours, but Ativan has a 10- to 18-hour clearance time (longer in older people)! She was overlapping and overdosing and it was making everyone think she was dying.

Good luck to you.

igloo572 Jan 2013
Ask if she could have SEDATION APNEA.
This is a very real issue that gets overlooked or not even considered as the cause for the semi sleep state. For individuals who live alone, often they don't know they even have apnea so it's not indicated on their health history.
Sedation apnea is different than a coma.
There is a whole protocol to dealing with sedation apnea management and most health care providers really aren't familiar with it. Good luck and let us know what evolves. Love a mystery.

rosie123 Jan 2013
ASK why she is sleeping all the time. Don't let up until you have an answer that makes sense. NH sedated my dad because it was easier to take care of him that way. I tend to be chatty and always sympathize with the CNA's because they do the majority of the work in NH's. Because of this I have had a few tell me in private about things that happen when I'm not there and they tell me the real truth about dads care and medications. It doesn't hurt to have an extra set of eyes watching ur family member when you can't be there. Also, my mom was on a ventilator and she would lick her lips and move her head from time to time before she actually woke up. They did sedate her in order to keep the tube in place. Good Luck finding answers about ur moms healthcare.

burritokid Jan 2013
It does sound like she is in a coma. My mom was a victim medical malpractice. She got sepsis from her first operation and a week later had a second one where they intubated her. She was in a coma for about 2 days, so they may have induced it to keep her from pulling out tubes or the anesthesia was too much which could be your mom's problem added on to other things. My mom while in a coma was very reactive but couldn't open her eyes. She communicated through arm and leg movement then she woke up after 2 days. Your mom may be doing the same. So there is a spark of hope for you, she just may not be able to wake up yet. Find out what meds (if they tell you - make sure you have that power of attorney that we didn't have - the doctors/nurses/staff will run circles around you and not be of any help or do what you ask them unless they know you are in charge of your mom's health and other affairs). DO NOT allow them to give her dilaudid, that will create severe hallicinations, it's much more powerful than morphine, a horrible narcotic. We had serious issues with the hospital giving that to my mom and a co-worker of mine, who is 40+ years younger than my mom, had serious issues with it too. BAD DRUG. I can see lawsuits coming out of that one. So call whatever doctors you need, try to avoid the ones who could be part of the "group" that's treating your mom. You don't want them conspiring against you just to get you off their back. We had to "fire" a couple of doctors because they didn't have our mom's best interest so don't be afraid to confront. You need a peace of mind and your mom needs you to be her advocate. I wish you much strength. It's a very stressful situation.

IsntEasy Jan 2013
Please ask a trusted doctor for an objective opinion about your mother's prognosis. Unless you intercede with a directive about her care, the nursing home will send her back to the hospital if her condition becomes critical and the hospital will continue to "treat" her. We entered this horribly sad situation with my FIL. No fewer than a dozen doctors, all with different opinions about treatment options, but only one brave and compassionate enough to talk candidly with us about his quality of life. The others put him through a torturous series of procedures and tests before he was finally transferred to hospice where he died peacefully within a couple of days.
Obviously, I don't know about your mom's outlook for any meaningful recovery but, from my experience, the people at the health care facilities who DO know her prognosis, won't take it into account when deciding whether to order tests, procedures, life-support, etc... Mercy is a quality that's hard for the elderly to find in healthcare these days. Doctors used to take responsibility for guiding a family through end-of-life decisions; offering their insight and experience to help us make choices about our loved ones. Not so anymore. As patients, we are simply a collection of conditions.
This is a painful time for you. Find one of your mom's doctors who will speak candidly with you about her prospects for recovery.

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