Afraid for my Mom---she is in ICU and everyday is more bad news
Comments
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I know & understand yourwendybill said:Still bad
Just wanted to update the group: my mom is still in icu --for a week post surgery now. The palliative care MD called tonight to let me know that she is up to 100% on the ventilator. He prepared me for the possibility of another assault on my mom and the inability of the vent yo give more...leading to a heart failure or stroke. We discussed code status and I went ahead with DNR . I'm scared to death for this other heavy shoe to drop. Im a mess and still can't believe this is happening two months post dx. 95 % of the time I am okay and rational and then the other time I can barely breathe from crying so hard. I WISH SOMEOne could answer WHY this is happening to me!!!!!
Wendy
I know & understand your pain. I nursed my mum at home until she died. It is a kind of horror watching your mum die - being helpless and sad at the same time. Just hold her hand and tell her everything you want to tell her. I did that & I found comfort in it. My mum reacted to my voice one day so I know she could still hear. It has all happened really quick for you & I am sorry. But either way it is hard when you are faced with the prospect of losing your mum. My thoughts are with you, Tina xxx0 -
Maybe a bright spotTina Brown said:I know & understand your
I know & understand your pain. I nursed my mum at home until she died. It is a kind of horror watching your mum die - being helpless and sad at the same time. Just hold her hand and tell her everything you want to tell her. I did that & I found comfort in it. My mum reacted to my voice one day so I know she could still hear. It has all happened really quick for you & I am sorry. But either way it is hard when you are faced with the prospect of losing your mum. My thoughts are with you, Tina xxx
Today a friend of my mom's called and told me that when she was visiting this afternoon that the vent settings were down to 40%!!! I immediately called the nurse and she indicated that my mom was resting better today and that they were able to do some weaning to arrive at the 40% setting and that tomorrow they were going to try the CPAP setting on the vent! My only thought is that they changed her sedative yesterday from versed to ativan. I wonder if the versed had a paradoxical effect and caused her delirium. Anyway---it is the first good news we have had in over a week now. I still fear what is around the corner and am trying to keep things in check. My dad told me that when he visited with her this evening that she had her eyes opened and recognized him. He also said that she had a look of terror and anxiety that were gut wrenching for him to see. I remember that look and it was disturbing for me also. Her level of fear and anxiety make it difficult to enjoy her new awareness-- if that makes sense.0 -
I know the feelingwendybill said:Maybe a bright spot
Today a friend of my mom's called and told me that when she was visiting this afternoon that the vent settings were down to 40%!!! I immediately called the nurse and she indicated that my mom was resting better today and that they were able to do some weaning to arrive at the 40% setting and that tomorrow they were going to try the CPAP setting on the vent! My only thought is that they changed her sedative yesterday from versed to ativan. I wonder if the versed had a paradoxical effect and caused her delirium. Anyway---it is the first good news we have had in over a week now. I still fear what is around the corner and am trying to keep things in check. My dad told me that when he visited with her this evening that she had her eyes opened and recognized him. He also said that she had a look of terror and anxiety that were gut wrenching for him to see. I remember that look and it was disturbing for me also. Her level of fear and anxiety make it difficult to enjoy her new awareness-- if that makes sense.
Happy for the little bit of good news for you and your family. If you can get a little bit every day that would be great!
I so know the feeling of seeing that look of fear in your mom's eyes. It's gut wrenching and heart breaking like nothing I've felt before.
I really hope your mom can get to a better place and get out of ICU and on the road
to recovery. It's all we can hope and pray for.
Keep the faith.0 -
I understandlenjam said:I know the feeling
Happy for the little bit of good news for you and your family. If you can get a little bit every day that would be great!
I so know the feeling of seeing that look of fear in your mom's eyes. It's gut wrenching and heart breaking like nothing I've felt before.
I really hope your mom can get to a better place and get out of ICU and on the road
to recovery. It's all we can hope and pray for.
Keep the faith.
It is both hard and un-natural to witness your mum / dad frightened as they are supposed to take care of us and protect us. It rocks your world doesn't it?
Take care all of you xxxxxx0 -
There is more you should knowTina Brown said:I understand
It is both hard and un-natural to witness your mum / dad frightened as they are supposed to take care of us and protect us. It rocks your world doesn't it?
Take care all of you xxxxxx
My mom is still in ICU, still on the vent and we are still struggling with end of life issues as a family. She has been in wrist restraints for almost a week now. I've stopped calling for updates and no longer request phone conferences. I've lost hope. My workplace is not allowing me back for my safety and safety of my clients. I work in an ICU in palliative care. I can no longer keep up my household. I met with a therapist today. After meeting with her I feel the need to fill in some blanks for all of the women reading this forum, fighting this disease and the people that love them. My mom went into these surgeries as a chronic smoker and as an alcoholic in denial. I watched her lie about the extent of her drinking before her second surgery. I think the status of her health and ability to recover was influenced by these factors as well as the fact that she had been forcing herself to eat a minimal amount of food since May. If my mom had gone into this healthy and/ or been more honest about her physical condition maybe things could have turned out different post surgery. Maybe not. I just want others reading my posts not to lose hope by what has happened and understand other factors involved. Wendy0 -
Hi Wendywendybill said:There is more you should know
My mom is still in ICU, still on the vent and we are still struggling with end of life issues as a family. She has been in wrist restraints for almost a week now. I've stopped calling for updates and no longer request phone conferences. I've lost hope. My workplace is not allowing me back for my safety and safety of my clients. I work in an ICU in palliative care. I can no longer keep up my household. I met with a therapist today. After meeting with her I feel the need to fill in some blanks for all of the women reading this forum, fighting this disease and the people that love them. My mom went into these surgeries as a chronic smoker and as an alcoholic in denial. I watched her lie about the extent of her drinking before her second surgery. I think the status of her health and ability to recover was influenced by these factors as well as the fact that she had been forcing herself to eat a minimal amount of food since May. If my mom had gone into this healthy and/ or been more honest about her physical condition maybe things could have turned out different post surgery. Maybe not. I just want others reading my posts not to lose hope by what has happened and understand other factors involved. Wendy
I am so sorry to
Hi Wendy
I am so sorry to hear about your mum and thank you for being honest about her health before surgery.
I read these posts and wonder 'Is this going to happen to me' but everyone is very different. I am an ex-smoker and I used to be a heavy drinker (when I was young and stupid) but gave up many years ago and I think that helped with my recovery.
It is good that you sought help for yourself.
All the best Jenny0 -
Will keep you & yours in my prayers...wendybill said:There is more you should know
My mom is still in ICU, still on the vent and we are still struggling with end of life issues as a family. She has been in wrist restraints for almost a week now. I've stopped calling for updates and no longer request phone conferences. I've lost hope. My workplace is not allowing me back for my safety and safety of my clients. I work in an ICU in palliative care. I can no longer keep up my household. I met with a therapist today. After meeting with her I feel the need to fill in some blanks for all of the women reading this forum, fighting this disease and the people that love them. My mom went into these surgeries as a chronic smoker and as an alcoholic in denial. I watched her lie about the extent of her drinking before her second surgery. I think the status of her health and ability to recover was influenced by these factors as well as the fact that she had been forcing herself to eat a minimal amount of food since May. If my mom had gone into this healthy and/ or been more honest about her physical condition maybe things could have turned out different post surgery. Maybe not. I just want others reading my posts not to lose hope by what has happened and understand other factors involved. Wendy
Wendy...I will keep you all in my prayers. I was just approached yesterday about taking part in a clinical trial for a vaccine for ovarian cancer & have questions about it. But when I read your posts'...well it reinforces my decision to do it. I have been fortunate thus far, but I feel for you hun & your Mom. I truly wish & hope that things turn around for her...in my prayers..Beth0 -
thank youwendybill said:There is more you should know
My mom is still in ICU, still on the vent and we are still struggling with end of life issues as a family. She has been in wrist restraints for almost a week now. I've stopped calling for updates and no longer request phone conferences. I've lost hope. My workplace is not allowing me back for my safety and safety of my clients. I work in an ICU in palliative care. I can no longer keep up my household. I met with a therapist today. After meeting with her I feel the need to fill in some blanks for all of the women reading this forum, fighting this disease and the people that love them. My mom went into these surgeries as a chronic smoker and as an alcoholic in denial. I watched her lie about the extent of her drinking before her second surgery. I think the status of her health and ability to recover was influenced by these factors as well as the fact that she had been forcing herself to eat a minimal amount of food since May. If my mom had gone into this healthy and/ or been more honest about her physical condition maybe things could have turned out different post surgery. Maybe not. I just want others reading my posts not to lose hope by what has happened and understand other factors involved. Wendy
Wendy, I want to thank you too for sharing that information. Yes, it is scary to read other stories of failing health. As the previous poster mentioned, I think when will this be me. I didnt' join this board until a year after I was diagnosed for that very reason.
Are you an ICU nurse? Hits close to home, huh? I worked as an RN since 1994. The last 10 being in long term care. I've witnessed the end of life for numerous patients.
Best wishes to you and your family.
XOXOXOXO0 -
Still hanging onnancy591 said:thank you
Wendy, I want to thank you too for sharing that information. Yes, it is scary to read other stories of failing health. As the previous poster mentioned, I think when will this be me. I didnt' join this board until a year after I was diagnosed for that very reason.
Are you an ICU nurse? Hits close to home, huh? I worked as an RN since 1994. The last 10 being in long term care. I've witnessed the end of life for numerous patients.
Best wishes to you and your family.
XOXOXOXO
My mom is still in ICU and still on the vent. I can hardly believe things have gone on this long. They started her on paralytics last Tuesday. So, she is completely paralyzed now in hopes that this will take away her agitation and tendency to fight the ventilator. They also have two chest tubes draining the pleural fluid from her lungs. I can't believe this many interventions have taken place in the last 15 days---since her second surgery. The oncologist still believes that somehow my mom can make it into remission. She has just been saddled with another infection. This depresses me as it took forever to find and treat the last one. I'm afraid that they are going to start talking about doing a trache as the days of keeping in the endotracheal tube are coming to an end. Physically, I'm starting to feel sick. Bring in the ICU continues to be a rollar coaster for my family. My mother is now 5 or 6 weeks out from her initial debulking. It seems like an eternity.
Wendy0 -
Wendy,wendybill said:Thank you for all the
Thank you for all the thoughtful replies. It has been helpful to hear from people that "know". My mom is still in ICU on the ventilator. I'm getting most of my information from the nurses that are handling her care. This has not been the most clear and the outlook seems to vary by personality of the nurse. Some are speculating if she will get off the vent and most are doubtful. Only one MD has called me on one occasion over the last 6 days without me initiating. I have found this lack of ingormation a detriment to my hope and understanfing
My mom is so agitated now that they have her in wrist restraints. This really upset me today and I decided I wanted her suffering to stop. She had a chest tube placed yesterday to drain the pleural fluid with the hope she could wean from the vent. Because of the agitation she has not been able to follow commands or focus her eyes. They are concerned that even if she could get off the ventilator that she would be too weak to undergo chemo. Tomorrow we have a phone conference with 3 MDs that the palliative care MD has arranged. Thank goodness for his help. I have returned home yesterday but was able to be with my mom the last 10 days and I am thankful for that time.
I'm trying to stay positive but also afraid to let my guard down. Thanks for the kind words of understanding.
Wendy
I am just reading
Wendy,
I am just reading your posts, and I am so, so sorry for your mother's plight and I am so sorry you feel so helpless.
You have to be strong, I know it's easier said than done; yet once she is stablized and they can begin to truly treat your mother, things will get better.
Please know that we are all praying for you.
Sincerely,
Sharon0 -
Hi Wendy,wendybill said:Still hanging on
My mom is still in ICU and still on the vent. I can hardly believe things have gone on this long. They started her on paralytics last Tuesday. So, she is completely paralyzed now in hopes that this will take away her agitation and tendency to fight the ventilator. They also have two chest tubes draining the pleural fluid from her lungs. I can't believe this many interventions have taken place in the last 15 days---since her second surgery. The oncologist still believes that somehow my mom can make it into remission. She has just been saddled with another infection. This depresses me as it took forever to find and treat the last one. I'm afraid that they are going to start talking about doing a trache as the days of keeping in the endotracheal tube are coming to an end. Physically, I'm starting to feel sick. Bring in the ICU continues to be a rollar coaster for my family. My mother is now 5 or 6 weeks out from her initial debulking. It seems like an eternity.
Wendy
I am still praying
Hi Wendy,
I am still praying for you to keep faith, strength and peace through all of this.
Love,
Sharon
P.S. My last posting got lost somewhere on this board, but just wanted you to know to stay strong.0 -
birthdaywendybill said:Still hanging on
My mom is still in ICU and still on the vent. I can hardly believe things have gone on this long. They started her on paralytics last Tuesday. So, she is completely paralyzed now in hopes that this will take away her agitation and tendency to fight the ventilator. They also have two chest tubes draining the pleural fluid from her lungs. I can't believe this many interventions have taken place in the last 15 days---since her second surgery. The oncologist still believes that somehow my mom can make it into remission. She has just been saddled with another infection. This depresses me as it took forever to find and treat the last one. I'm afraid that they are going to start talking about doing a trache as the days of keeping in the endotracheal tube are coming to an end. Physically, I'm starting to feel sick. Bring in the ICU continues to be a rollar coaster for my family. My mother is now 5 or 6 weeks out from her initial debulking. It seems like an eternity.
Wendy
I too was thinking of you and your mom on Sept 3rd.
If you ever want to chat directly you can e-mail me at jplennox@aol.com.
I guess the roller coaster will continue for all of us on this journey into the
unknown with this dx.
Jami0 -
grrrrrlenjam said:Mom
SO sorry to hear about your mom. I feel like I am reading my own story when I read yours. I am 40 with a 4 year old, mom is 67 with a birthday on Sept 3rd. Diagnosed the end of June. Mom had surgery to remove ovaries, tubes and omentum. Told she's be in the hosp for 3 - 5 days, which turned out to be 10. Came home for 3 and back in again for another surgery and 4 more days in the hospital. She's been home now for a week and is in terrible pain from tubes they put in so they can drain the fluid in her plueral cavity, every day. Which she screams out in pain, while they are doing it.
I'm at a total loss as to what to say. Everything has been a struggle since this diagnosis. We've done everything the gyn/onc has said and the outcomes have not been what we were told. Mom thought she'd have surgery, go home, get chemo and live. Now, I think after everything she's been through she doesn't even want to try the chemo.
It's a horrible disease for everyone. I can't imagine how she feels and I feel so helpless to help her. I want her to live, to be a grandmother to my child, who loves her so much.
I just don't think she wants it.
Try to keep hope. I know it's the hardest thing to do and I struggle everyday with it myself.grrrrr
0
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