A Caregiver's life

slg

I am posting this in this section because my husband suffers from Liver Cancer and I know that there are plenty of caregivers who read this particular section because they too have a loved one who suffers from this disease!

I have participated and read this page since my husband was diagnosed in 2009. Most of the time it has been helpful to get other opinions, learn more about certain procedures first hand. I hope my posts have been helpful to other people too.

A Caregiver's life is a lonely place. No one really knows except for other caregivers. I am so very frustrated right now that I had to share my feelings with someone.

I am sick of people asking how my husband is, or how are you holding up, or hang in there, or Love and Prayers, and offering "if there's anything I can do just let me know"... I am tired of having to monitor the health care proviers because they don't really care about my husband the way I do.

Everytime I have tried to reach out to someone just to talk they are always too busy... I am tired of hearing how everyone is going on vacation or living their lives while ours has been in Limbo for almost two years. We can't plan anything because we never know if he will feel up to it or if we'll be back in the ER!!

This, by far, has been the hardest thing I have ever done in my life. To watch the man that I have loved and shared my life with since I was 17 years old is so very hard. I am so afraid he will not get to transplant and I will have to watch him deteriorate even more.

Anyone else feel like me?

AEI

You are not alone!
You are not alone! It IS the hardest job I've ever had too. Check your email - I sent you a note.

agt_dht

Other people's lives
Yes, this is the hardest thing I've ever experienced as well, and I understand completely what you mean about other people going on vacation and so on. When I see cars with out of state license plates, covered with dust from their road trip, I feel like I'm observing creatures from another species that live very different lives than we do. Even when my husband was feeling stronger we felt the same limitation about making plans, or even accepting an invitation without a caveat that we may not be able to be there that particular day. I've started reading TripAdvisor reviews of cruises late at night, particularly the ones that are fraught with problems, because they inevitably make me grateful that at least we're experiencing this in the comfort of our home, lying in our own bed. We tried to take a vacation in June and my husband got ill with a bile-duct infection the first night away - since then I'm just happy I'm not sitting on a flight with him, trying not to cry and hoping he can make it home.

mhrosado

caregivers
Hi slg. Some days are worse than others. a friend of mine says I'm in denial but I am just doing what I need to do to get through the day and keep Ed from getting depressed mostly because like the song says I've built my life around him and I won't be able to make it without him. Today is our 34th anniversary!! He's always been there for me. It is because of him that I was able to continue my education even after my kids were born and his belief in my abilities has helped me believe in myself. He has been my better half and now although it is extremely difficult to see him at times weak and at times in a lot of pain and helpless I know that I have to be strong because he is counting on me and I can't let him down.
I definitely understand what you are saying and I am glad that you brought that up but now we need to go back to be the best caregivers that we know how to be. please dont let negative or sad thoughts stay around for too long. Enjoy every minute that you have with your husband even if it is just sitting next to him quietly. as i tell you this i am also telling myself. love and prayers - maria

slg

mhrosado said:

caregivers
Hi slg. Some days are worse than others. a friend of mine says I'm in denial but I am just doing what I need to do to get through the day and keep Ed from getting depressed mostly because like the song says I've built my life around him and I won't be able to make it without him. Today is our 34th anniversary!! He's always been there for me. It is because of him that I was able to continue my education even after my kids were born and his belief in my abilities has helped me believe in myself. He has been my better half and now although it is extremely difficult to see him at times weak and at times in a lot of pain and helpless I know that I have to be strong because he is counting on me and I can't let him down.
I definitely understand what you are saying and I am glad that you brought that up but now we need to go back to be the best caregivers that we know how to be. please dont let negative or sad thoughts stay around for too long. Enjoy every minute that you have with your husband even if it is just sitting next to him quietly. as i tell you this i am also telling myself. love and prayers - maria

Just when I thougt It couldn't get any worse, it just did!!
Thank you fellow caregiver's for your replies. I have just had a day from "you know where". Paul is back in the hospital!! And I had to walk out of there tonight at 11pm after spending 3 hours in the ER waiting room, then 3 more hours an ER exam room (waiting for the room upstairs) and then 2 more hours for the hospitalist to come examine him before prescribing antiobiotics, after, for the third time, I had a nurse tell me that the hospalist had 6 other people to see before my husband and they were all sicker than he!!! Since when is Cancer not sick!!! That was the third person to have said that to me today and I lost it!!! I had to leave there before I started saying things that I shouldn't. It is now 12:15am Saturday and I have yet to get a call from the Hospitalist so I am assuming Paul will not get any medication today until the AM shift comes on...
I want to cry but I can't. I do try to stay tough and strong but I am losing that battle quickly... I have no one to talk to at this hour of night and I know that one of you probably can relate...
An to add to my frustration, the Radiologist from Kansas was supposed to have called today to let us know the results of the CT scan he ordered on Wednesday that I sent a CD of to him at my expense!!!

mhrosado

slg said:

Just when I thougt It couldn't get any worse, it just did!!
Thank you fellow caregiver's for your replies. I have just had a day from "you know where". Paul is back in the hospital!! And I had to walk out of there tonight at 11pm after spending 3 hours in the ER waiting room, then 3 more hours an ER exam room (waiting for the room upstairs) and then 2 more hours for the hospitalist to come examine him before prescribing antiobiotics, after, for the third time, I had a nurse tell me that the hospalist had 6 other people to see before my husband and they were all sicker than he!!! Since when is Cancer not sick!!! That was the third person to have said that to me today and I lost it!!! I had to leave there before I started saying things that I shouldn't. It is now 12:15am Saturday and I have yet to get a call from the Hospitalist so I am assuming Paul will not get any medication today until the AM shift comes on...
I want to cry but I can't. I do try to stay tough and strong but I am losing that battle quickly... I have no one to talk to at this hour of night and I know that one of you probably can relate...
An to add to my frustration, the Radiologist from Kansas was supposed to have called today to let us know the results of the CT scan he ordered on Wednesday that I sent a CD of to him at my expense!!!

Caregivers
you said he was given antibiotics last night. did they tell you what was going on with him? have the docs seen him today? are you still at the hospital?

slg

mhrosado said:

Caregivers
you said he was given antibiotics last night. did they tell you what was going on with him? have the docs seen him today? are you still at the hospital?

Update
I thank you for your concern and checking back in Maria... Yes, he's still there and today is Sunday. His white blood count was high indicting infection plus some pain from the liver region. He is on antibiotics. he's had an EKG, chest xray, ultra sound and today an MRI. His WBC went down and his potassium and sodium if finally normal range. he was transferred from the cardiac floor to the Liver floor. No results from the MRI yet. Tomorrow.... I'm tired, scared, frustrated with the incompetant help at the hospital and this waiting is horrible..

agt_dht

slg said:

Update
I thank you for your concern and checking back in Maria... Yes, he's still there and today is Sunday. His white blood count was high indicting infection plus some pain from the liver region. He is on antibiotics. he's had an EKG, chest xray, ultra sound and today an MRI. His WBC went down and his potassium and sodium if finally normal range. he was transferred from the cardiac floor to the Liver floor. No results from the MRI yet. Tomorrow.... I'm tired, scared, frustrated with the incompetant help at the hospital and this waiting is horrible..

Monday - how are you doing, slg?
I am hoping there is some improvement today - my caregiver experience on the liver floor was very discouraging. It's impossible for the patient to sleep, and the caregiver to be there alongside with the small rooms. Does he have a roommate?

imjb73

yes we do feel like you
So sorry you are going through this. The cargiver road is rocky that's for sure. Nobody has a clue that has not been there. Positive attitudes are hard to come by. The waiting game adds so much more stress. I do so wish I could help you in some way besides saying I'm sorry and know what you are going through.

Daisylin

imjb73 said:

yes we do feel like you
So sorry you are going through this. The cargiver road is rocky that's for sure. Nobody has a clue that has not been there. Positive attitudes are hard to come by. The waiting game adds so much more stress. I do so wish I could help you in some way besides saying I'm sorry and know what you are going through.

yes!
I can totally relate to everything you wrote!! My husband is stage ivb esophageal mets to liver, and man, let me tell you, what a nightmare! But, I don't have to tell you, you already know.

YES YES YES, everyone with their "let me know what I can do to help" and "call if you need anything" seem to have vanished. Our phone rarely rings, I guess no one knows what to say. My parents are full of, "well, we're praying for and expecting a miracle" ---Thanks, but really???? He's stage ivb, on a feeding tube for survival, and just decided that he's had enough of chemo. So, sorry folks, thanks for your prayers, but a miracle is not going to happen. I'm sure every caregiver out there has heard the same well intentioned, but idiotic statements.

No one understands what we're going through, and if one more person offers to bring a casserole, because I've mentioned that Lee won't eat anything, I'm gonna scream. Do they really thing that Lee is going to start eating miraculously because you've brought over your award winning macaroni casserole???? I know I should appreciate all offers of help, no matter how idiotic they are, but I guess I'm just to the point of utter frustration.

I usually post on the esophageal forum, and am just spending some time this morning sifting over the Liver boards, I've read many of your stories, and I feel for each and every one of you, be strong, be well,
Chantal

LeeandShirley

A Caregiver's Life
Yes, sig, I too feel like you. And then sometimes I don't. That is the life of a caregiver. Never a day the same, and sometimes, time seems to have stood still. And every week , every day and every second seems the same. My husband , Lee, has cholyangiocarcenoma, a primary liver cancer that has no transplant prospects. He has had spread to his liver after resection, was supposed to be a cure. Then after surgery, he developed peritonitis and sepsis, and was in Critical care for two months off and on, after some incompetant and ignorant assessments of his condition. After all that, we thought he would be well. In April of 2011 his cancer returned and was also spread to his lymph nodes and the pelvis. He has been doing remarkably well, on the outside, even though we know this will not go away. People are beginning to act like he is cured, because he doesn't "act sick". He has been undergoing chemo since May 2011 and his tumors have shrunk, Thank GOD, but it will not last forever. We know this. And he still has an issue with the tumor on the bone at the pelvis which is not responding. This seems to go on forever and nothing seems to get any better. You hope and those hopes get dashed. You seem on the edge of defeat and a tiny thing gives you hope again. And then you get hit again. Right now you seem to be going thru one of those crisises. And you don't think you will be able to go thru this again, or don't even want to. Yes, I am a caregiver and I do feel like you and for you , too. Take care of yourself, you will need your strength. Especially with your recent uphill battles. Sending prayers. ((((((HUGGS)))))))

slg

LeeandShirley said:

A Caregiver's Life
Yes, sig, I too feel like you. And then sometimes I don't. That is the life of a caregiver. Never a day the same, and sometimes, time seems to have stood still. And every week , every day and every second seems the same. My husband , Lee, has cholyangiocarcenoma, a primary liver cancer that has no transplant prospects. He has had spread to his liver after resection, was supposed to be a cure. Then after surgery, he developed peritonitis and sepsis, and was in Critical care for two months off and on, after some incompetant and ignorant assessments of his condition. After all that, we thought he would be well. In April of 2011 his cancer returned and was also spread to his lymph nodes and the pelvis. He has been doing remarkably well, on the outside, even though we know this will not go away. People are beginning to act like he is cured, because he doesn't "act sick". He has been undergoing chemo since May 2011 and his tumors have shrunk, Thank GOD, but it will not last forever. We know this. And he still has an issue with the tumor on the bone at the pelvis which is not responding. This seems to go on forever and nothing seems to get any better. You hope and those hopes get dashed. You seem on the edge of defeat and a tiny thing gives you hope again. And then you get hit again. Right now you seem to be going thru one of those crisises. And you don't think you will be able to go thru this again, or don't even want to. Yes, I am a caregiver and I do feel like you and for you , too. Take care of yourself, you will need your strength. Especially with your recent uphill battles. Sending prayers. ((((((HUGGS)))))))

Quick Update
Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this..

northa914

slg said:

Quick Update
Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this..

Thank you from the flip side
Just wanted to thank you for sharing what you're going through with us. No words can help take away your fears or suffering. Even though I'm on the other side of the equation, I've seen the fear, exhaustion, and pain on the faces of those that love and care for me. I have the luxury of crying and getting angry, of wanting to give up, of not suffering in silence. Our caregivers don't. But knowing what you're going through makes us fight harder! I don't fear my own passing, my greatest fear is the pain that my family and friends and children will feel if I don't win this battle. My angels have been here for me through thick and thin, even before I was diagnosed with cancer. I have to return the favor by fighting as hard as I can so they know that what they've given me is of tremendous importance and meaning. Please know that I'm here for you too, as a shoulder to cry on, someone to be scared with, someone to vent to. Share what your husband is going through, and never feel selfish for having the feelings that you do. Feeling powerless to do more for the one that you love so much is a huge burden for you to bear alone.

Andrea

mhrosado

slg said:

Quick Update
Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this..

slg
spending the holiday at the hospital is difficult because unless the doctors and staff are on a regular schedule it may feel like a day wasted. what may help is that because there are less staff the patient and the caregiver may get a little bit of a breather from the noise and be able to rest a little.
you have two choices, you can let the frustration get worse because it's a holiday and nothing much is happening in the hospital, you are there and everyone else (seems like everyone else)is out on a picnic or something while your life is falling apart, or you can take a little bit of today and just fluff up the pillow, stretch the sheets, and just do the things that you can do in a peaceful and quiet manner. We are strong women and sometimes that means taking that power to calm ourselves down because like you said there is really very few of us that understand what you are going through and you need to be well to take care of your husband. you know that I know that it is easier said than done, but take a deep breath and today be a caregiver, kiss your husband on the forhead and tell him you love him. Today and from now on it will be about caring for him and knowing that the most important thing that you can do is letting him know that you are there. I sincerely hope that he does make it out of the hospital and that he gets his transplant. I will hold that thought with you but my special wish is that your last days with your husband,whenever that may be, are peaceful and loving. This is also being strong and confident.

slg

mhrosado said:

slg
spending the holiday at the hospital is difficult because unless the doctors and staff are on a regular schedule it may feel like a day wasted. what may help is that because there are less staff the patient and the caregiver may get a little bit of a breather from the noise and be able to rest a little.
you have two choices, you can let the frustration get worse because it's a holiday and nothing much is happening in the hospital, you are there and everyone else (seems like everyone else)is out on a picnic or something while your life is falling apart, or you can take a little bit of today and just fluff up the pillow, stretch the sheets, and just do the things that you can do in a peaceful and quiet manner. We are strong women and sometimes that means taking that power to calm ourselves down because like you said there is really very few of us that understand what you are going through and you need to be well to take care of your husband. you know that I know that it is easier said than done, but take a deep breath and today be a caregiver, kiss your husband on the forhead and tell him you love him. Today and from now on it will be about caring for him and knowing that the most important thing that you can do is letting him know that you are there. I sincerely hope that he does make it out of the hospital and that he gets his transplant. I will hold that thought with you but my special wish is that your last days with your husband,whenever that may be, are peaceful and loving. This is also being strong and confident.

thank you Maria
Your comments are very true, touching and comforting. We actually have a glimmer of hope today. Dr. in KC is presenting our case tomorrow am and he may be transported to KC this week and get listed ASAP!!!
We did have a different holiday yesterday but the hospitalist why has been there the whole week up to today made it bearable. I ended up making cupcakes for the nurses today to thank them for their care. I sure hope we get good news tomorow and they get him out to KC this week and he gets his transplant this month!!!
Thank you so much for your support...

slg

slg said:

thank you Maria
Your comments are very true, touching and comforting. We actually have a glimmer of hope today. Dr. in KC is presenting our case tomorrow am and he may be transported to KC this week and get listed ASAP!!!
We did have a different holiday yesterday but the hospitalist why has been there the whole week up to today made it bearable. I ended up making cupcakes for the nurses today to thank them for their care. I sure hope we get good news tomorow and they get him out to KC this week and he gets his transplant this month!!!
Thank you so much for your support...

Latest Update
Well, Kansas did not come through for us last week. They did NOT present his case and will do so this Wednesday! We were very very disappointed that they had a lack of communication and didn't do this. They asked for yet another MRI and that it be overnighted to them which we did.
The good news is Paul came home Saturday! He is resting comfortably and glad to me home in his own bed. I really don't know what we will do if we do not get good news this week..
This last hospital stay took it's toll on both of us. The care was very good with some exceptions but one thing I did learn is that you definately need someone there the majority of the time to advocate for you, run to get things that you don't want to bother nurses for and monitor labs and drugs just in case something slips through the cracks. Learn where everything is on the floor, ie. lines, water, ice, juice, snacks etc. so that you can access these things when needed!!!
Hoping that we get good news later this week!!

mhrosado

slg said:

Latest Update
Well, Kansas did not come through for us last week. They did NOT present his case and will do so this Wednesday! We were very very disappointed that they had a lack of communication and didn't do this. They asked for yet another MRI and that it be overnighted to them which we did.
The good news is Paul came home Saturday! He is resting comfortably and glad to me home in his own bed. I really don't know what we will do if we do not get good news this week..
This last hospital stay took it's toll on both of us. The care was very good with some exceptions but one thing I did learn is that you definately need someone there the majority of the time to advocate for you, run to get things that you don't want to bother nurses for and monitor labs and drugs just in case something slips through the cracks. Learn where everything is on the floor, ie. lines, water, ice, juice, snacks etc. so that you can access these things when needed!!!
Hoping that we get good news later this week!!

Home!
Glad that you and Paul are home now! Keep us updated.
Ed is going to be evaluated for another Tace which is a good thing because yet another time before this..about a month ago, we were told to consider hospice. I tell Ed that doctors are so used to saying that the life expectancy for liver cancer is 6 months that they really have a hard time treating people like him (and Paul and others here) who are still fighting after more than a year and a half.

Take care.