Update-warning:This post is grim and please use your discretion before reading...
minky1225
Member Posts: 70
HI all. There has been so much going on with Mom lately that I haven't had a chance to post...
Just a little background again..
Mom was taken into ER on jan 11 for shortness of breath. They told me that she had a blood clot in her leg that had traveled to both of her lungs. She was put on heparin and I was told they were going to keep her for observation. The next day, I get a phone call that she is now in ICU due to fluid around her lungs. After installing two chest drains and determining the fluid(pleural effusion) was malignant, they has told us that she has stage IV OVCA. Since jan 11, we have had quite a roller coaster ride. She is still in the hospital now.
Since Jan 11, they have done a procedure to one lung where they blow a powder in there so that the fluid cannot rebuild. The other lung still has a small amount of fluid but not enough to do surgery. When she recovered from that, they started her on Chemo. She is on Taxol/Carboplatin for 8 hours every 3 weeks. Her first round gave her body aches, red face, sores in the mouth. She started feeling better about a week after. She started losing her hair about 2 weeks ago so my sister shaved her head(in the hospital) so that her hair would stop going into her mouth,eyes, and food. She underwent her second round of Chemo on Feb. 26th. Since then, everything seems to be going downhill.( I should probably note that Mom has to be on oxygen 24/7 and has a nebulizer treatment 3 times a day. She has to sleep at night using a C-PAP machine and they have to give her anxiety meds before they put this on her because she gets clostrophobic(sorry spelling). I have been watching her deteriorate drastically. She has lost about 55 lbs. and doesn't even look like my Mom.
Within the past two days, my mom's mental state has started to unravel. She is just talking nonsense and seeing things that don't exist. She is hallucinating. She also has bouts of paranoia. The nurses and doctors don't really know why this is happening. She has quite a few drugs in her system that might be contributing and also a UTI but they cannot pinpoint what's making her like this. They also are not sure if she will ever return to a normal state. She knows she is in the hospital but will tell me about all the things that she was doing throughout the course of the day...such as go shopping or talk to people who I know were not there. She told me all about "spiritual birds" and how they are different from regular birds with alot of details. She said that God was with the spiritual birds and was saying "Come home" but she said that she knew she had alot of stuff to take care of so she couldn't go with them. She said that God said something about me and Dianne, how we have to figure it out..That's strange because Dianne is my Mom's sister and we had a huge fight about my Mom a few weeks ago-my mom knows nothing about this.... she also said that she was talking to the doctor with her Dad( who has been dead for over 20 years). I'm just beside myself right now and completely on edge...
The frustrating part is that I'm not getting any answers from the professionals right now. All of their responses are very evasive. I just don't know what to do next..I feel like I should be doing something. Why won't they tell me something?????? Even if it might be a hunch or something that they have seen prior with other patients. They won't even give me a life expectancy. I'm just at my wit's end and don't know where to turn.
I wasn't sure if I even wanted to post on here because I usually keep this board open to only questions or hopeful posts. I would never want to upset anyone.. I guess I'm just wondering if anyone has ever experienced this before with this horrendous disease and recovered or if they have ever seen anyone else go through this. Please note to feel free to respond with honesty and please don't feel as if you have to sugar coat anything. I just want to know. Does this just happen to people who have been in the hospital for so long? Can it be cancer related? Maybe she is planning for the inevitable.
Sorry again in advance.
Just a little background again..
Mom was taken into ER on jan 11 for shortness of breath. They told me that she had a blood clot in her leg that had traveled to both of her lungs. She was put on heparin and I was told they were going to keep her for observation. The next day, I get a phone call that she is now in ICU due to fluid around her lungs. After installing two chest drains and determining the fluid(pleural effusion) was malignant, they has told us that she has stage IV OVCA. Since jan 11, we have had quite a roller coaster ride. She is still in the hospital now.
Since Jan 11, they have done a procedure to one lung where they blow a powder in there so that the fluid cannot rebuild. The other lung still has a small amount of fluid but not enough to do surgery. When she recovered from that, they started her on Chemo. She is on Taxol/Carboplatin for 8 hours every 3 weeks. Her first round gave her body aches, red face, sores in the mouth. She started feeling better about a week after. She started losing her hair about 2 weeks ago so my sister shaved her head(in the hospital) so that her hair would stop going into her mouth,eyes, and food. She underwent her second round of Chemo on Feb. 26th. Since then, everything seems to be going downhill.( I should probably note that Mom has to be on oxygen 24/7 and has a nebulizer treatment 3 times a day. She has to sleep at night using a C-PAP machine and they have to give her anxiety meds before they put this on her because she gets clostrophobic(sorry spelling). I have been watching her deteriorate drastically. She has lost about 55 lbs. and doesn't even look like my Mom.
Within the past two days, my mom's mental state has started to unravel. She is just talking nonsense and seeing things that don't exist. She is hallucinating. She also has bouts of paranoia. The nurses and doctors don't really know why this is happening. She has quite a few drugs in her system that might be contributing and also a UTI but they cannot pinpoint what's making her like this. They also are not sure if she will ever return to a normal state. She knows she is in the hospital but will tell me about all the things that she was doing throughout the course of the day...such as go shopping or talk to people who I know were not there. She told me all about "spiritual birds" and how they are different from regular birds with alot of details. She said that God was with the spiritual birds and was saying "Come home" but she said that she knew she had alot of stuff to take care of so she couldn't go with them. She said that God said something about me and Dianne, how we have to figure it out..That's strange because Dianne is my Mom's sister and we had a huge fight about my Mom a few weeks ago-my mom knows nothing about this.... she also said that she was talking to the doctor with her Dad( who has been dead for over 20 years). I'm just beside myself right now and completely on edge...
The frustrating part is that I'm not getting any answers from the professionals right now. All of their responses are very evasive. I just don't know what to do next..I feel like I should be doing something. Why won't they tell me something?????? Even if it might be a hunch or something that they have seen prior with other patients. They won't even give me a life expectancy. I'm just at my wit's end and don't know where to turn.
I wasn't sure if I even wanted to post on here because I usually keep this board open to only questions or hopeful posts. I would never want to upset anyone.. I guess I'm just wondering if anyone has ever experienced this before with this horrendous disease and recovered or if they have ever seen anyone else go through this. Please note to feel free to respond with honesty and please don't feel as if you have to sugar coat anything. I just want to know. Does this just happen to people who have been in the hospital for so long? Can it be cancer related? Maybe she is planning for the inevitable.
Sorry again in advance.
0
Comments
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I'm not sure what to say
I'm not sure what to say about your mum's hallucinations. My mum had quite similar things when she was on morphine during the end stage of her cancer. She was seeing things in the room and talking about things which didn't really make sense. The Mac Millian nurses couldn't really give any answers. My dad thought it was the cocktail of drugs she was on, my sister thought it was because she was getting ready to go and would soon be re-united with her own mother & brother. I thought the cancer had gone into her brain as she was saying irrational things. It could have been a combination of all 3.
I am so sorry you are witnessing the deterioation of your mom. I too had this experience 18 months ago and it is heartbreaking.
Please take heart that your mum isn't suffering with her hallucinations & they are probably giving her some comfort.
Keep in touch & I really hope you can find the strength to give comfort to your mum. Tina xxx0 -
Dear minky
I am so sorry about your Mom and I am wondering if it isn't time to have a conversation with someone about hospice care..Now I am not a doctor and don't know, but it sounds like your Mom needs some pretty intense care and those folks are able to deliver it...I cannot understand their indirectness so my thought on that when I am in that situation is to ask direct questions of them. I know this may be hard, but I have had to do that and the doctors have been very straightforward with me to tell me, "no she doesn't need that, or yes that's a good idea". I hope this is helpful for you and ask those doctors until you get the answers you need.0 -
God sends comforters
Minky,
I am not a religious nut, and I hope this is a temporary problem with your mom's medications. That much said, there are many, many stories of people in their last weeks or days of life who enjoy visits from loved ones who have gone before. These are very real experiences, and the visits and conversations help the person to become more comfortable as they approach death. In the book Final Gifts, hospice nurse Maggie Callahan says to simply listen, and maybe say something like, well it's always good to hear of old Joe or whoever. What appears to be confusion and disorientation may instead be what's called "nearing death awareness." It's not wrong, but rather a natural heightened state as the body and soul separate, perhaps.
My religious education is fair to middlin', but I think there are numerous mentions in the bible of God sending a friend or comforter to souls in need. Every bit as good as any medical miracle, or probably much better.0 -
Minky, I am so sorry
Hi Minky. I am so sorry to hear about your mom. It sounds like you've all been thru hell. I can't really offer much advice. My mother had Stage IV uterine cancer and she passed away very quickly and suddenly. She was undergoing chemo (Carbo and taxol). She made it thru first 3 rounds okay, they did a mid-point cat scan, told us it was 'basically good" They were going to do a couple more rounds and then look at surgery. The the bottom dropped out. She has just started the fifth round on a Monday and was in the hospital that Fri. dying. She died that evening. She was in a tremendous amount of pain. Hospice came in before I got to the hospital and told my sister she would come back later. She never did. I believe she knew my mother was close to death. I know what you mean about them not looking like themselves. Has the hospital said anything to you about hospice? From what I've heard from friends and relatives, hospice people are usually very compassionate and forthcoming. It's strange that the doctors and nurses are being so evasive. The nurses didn't come out and tell us our mother was dying but they indicated she was in very bad shape. The house dr. came and checked her that evening and said her pulse was so low he couldn't get a reading. He told us he did not beleive she would live thru the night. We left to go get something to eat and when we came back, she was gone. I am not a doctor. I have no medical backround. It's not over until it's over but it sounds like your mother has very little time left. It sounds like she is asking you for permission to leave. We gave my mother this permission after calling in the hospital chaplain and praying with him. My heart and soul goes out to you and your mom and your sister and the rest of your family. Please consider posting on the emotional support and grief and bereavement sites as well. You will find some wonderfully insightful and caring people there as well.
Cindy0 -
Our prayers are with you
My mother had said strange things and saw them too, with a broken hip and in bed unable to do anything. I just went along with what ever she said. She finally had a stroke that left her in a coma and the final day I sat by her bed and told her over and over that it was OK to go on and join Daddy. I would miss her but I wanted her to be comfortable and happy going to a better place. Hospice is great. If your city doesn't have that ask about a social worker at the hospital that may be someone you can talk to. It is tough and things could turn around. It's not over until God calls. Saundra0 -
UTI
Hi Minky,
I'm so sorry you're seeing so much trouble with your mom. Both of my parents had moments of hallucination before their passings, and it's hard to see and understand, but we were told in both cases (and in totally different locales) that UTIs can cause confusion and diorientation. My husband's dad was overdosed with a drug when he was in the hospital, and he was out of his mind for a day or two, also.
One thing I can offer is that I'm always amazed at how much the human body can take and recover from. I hope your mom is able to recoup her wits and will be able to talk to you sensibly again, but I also know it may be her time to leave this world. My dad had Alzheimer's, and we were not able to care for him; my mom lingered for two years before finally passing. She recovered some of her speech and memories for a while, but spent most of that time being cared for in a nursing facility.
It is very difficult to see a loved one sick and unable to communicate, and my heart goes out to you. I really hope your mom is able to talk to you soon, but I also hope that you realize that she may not be able to. I listened to a book on tape called "How We Die" by Sherwin Nuland some time ago. It took away a lot of my personal fear of death, and helped me accept my parents' situations better, also.
Is it possible that your mom may have had a stroke? I had DVT and an embolism to one of my lungs, too, and know that a stroke was quite possible with it being present. (DVT can be a symptom of lower-body cancer, as mine was, and I've done a lot of reading about it, too.)
Best of luck to you both.
Sue0 -
I am reminded of a quotegroundeffect said:UTI
Hi Minky,
I'm so sorry you're seeing so much trouble with your mom. Both of my parents had moments of hallucination before their passings, and it's hard to see and understand, but we were told in both cases (and in totally different locales) that UTIs can cause confusion and diorientation. My husband's dad was overdosed with a drug when he was in the hospital, and he was out of his mind for a day or two, also.
One thing I can offer is that I'm always amazed at how much the human body can take and recover from. I hope your mom is able to recoup her wits and will be able to talk to you sensibly again, but I also know it may be her time to leave this world. My dad had Alzheimer's, and we were not able to care for him; my mom lingered for two years before finally passing. She recovered some of her speech and memories for a while, but spent most of that time being cared for in a nursing facility.
It is very difficult to see a loved one sick and unable to communicate, and my heart goes out to you. I really hope your mom is able to talk to you soon, but I also hope that you realize that she may not be able to. I listened to a book on tape called "How We Die" by Sherwin Nuland some time ago. It took away a lot of my personal fear of death, and helped me accept my parents' situations better, also.
Is it possible that your mom may have had a stroke? I had DVT and an embolism to one of my lungs, too, and know that a stroke was quite possible with it being present. (DVT can be a symptom of lower-body cancer, as mine was, and I've done a lot of reading about it, too.)
Best of luck to you both.
Sue
I am reminded of a quote from Hamlet.....
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.0 -
Hi,
I actually saw your post
Hi,
I actually saw your post days ago and I had to take a few days to reflect on the matter with your mother being that it is such a sensitive topic for us all.
Your post took me back just a few months ago to my father in the same state (a routine diverticulosis surgery gone terribly bad). For some reasons his intestinal tissues that were operated on were starved of a blood supply and became gangrenous upon which major emergency surgery was required. He was left with a gaping 18" open wound running down the middle of his belly. Okay, sorry; didn't mean to get too graphic. I guess the point I am trying to make is that during this time under the influence of pain meds, seditatives, I watched my father in the throes of agony/purgatory almost? He called on the names of people who had long passed as well. We didn't know what to make of this either, so we would just sit there stunned not knowing what to do or what any of it meant!
We were pretty sure of one conclusion... our father was deteriorating in his health and we had resolved he would be going home. It got worse! Kidneys stopped functioning, his ability to swallow, thus eat had left him; but guess what? After 4 long enduring months in the hospital, my father is back home and is looking like his old self day after day.
Sorry I'm so long-winded, but I just wanted you to see, that many things are just not meant for us to understand and we just have to pray that God is with us even we feel all alone and that just because things are looking its' worst, does not mean that it will be that way.
I know this is painful, yet I will keep you and your mother in my prayers.
God be with you,
Sharon0 -
Sending prayers
I am so sorry that your mom and you are going through this. You were so helpful to me a couple of weeks ago when I posted about my mom. She is so blessed to have you as her advocate. You are a fighter too!
I will be saying prayers for both of you and please keep us updated on how things are going.
Blessings,
Sheri0 -
I don't want to offer false hope, but....sherirs04 said:Sending prayers
I am so sorry that your mom and you are going through this. You were so helpful to me a couple of weeks ago when I posted about my mom. She is so blessed to have you as her advocate. You are a fighter too!
I will be saying prayers for both of you and please keep us updated on how things are going.
Blessings,
Sheri
I don't have much to add to the above, except to answer one of your questions:
You asked if anyone with Stage 4 ovarian cancer recovers.
I had a mamogram in December and the technician, who looked about 40 or so, told me she had Stage 4 ovarian 18 years ago and, after much chemo, completely recovered. I was astounded since I have never heard of anyone completely obliterating the disease when it had progressed to that stage.
Keep the faith. The best thing you can do for your mother is to be there to offer her the support she needs, to keep educating yourself and asking questions so you can help her doctors do the best job possible for her.0 -
Thank heavens for the responses!!!!lnyeholt said:I don't want to offer false hope, but....
I don't have much to add to the above, except to answer one of your questions:
You asked if anyone with Stage 4 ovarian cancer recovers.
I had a mamogram in December and the technician, who looked about 40 or so, told me she had Stage 4 ovarian 18 years ago and, after much chemo, completely recovered. I was astounded since I have never heard of anyone completely obliterating the disease when it had progressed to that stage.
Keep the faith. The best thing you can do for your mother is to be there to offer her the support she needs, to keep educating yourself and asking questions so you can help her doctors do the best job possible for her.
I cannot thank you all enough for your honest and hopeful responses!!! Yes, things have been rough and yes I felt like giving up hope...but you all have been just wonderful! I am happy to report that Mom's mental health has improved, well except for the occasional bouts of anger...That's a whole new topic but I have read that it is quite normal considering the circumstances.
I am about a post a new topic that will be hopeful this time!
Thank you all for riding my emotional roller coaster...It is extremely comforting to know that we are all in this "amusement park" together!
Thank you again!0
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