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It's Been A While **Update**

cbcardb12
Posts: 85
Joined: Mar 2009

It has been a month today since I posted with the news that my husband (CB) was told that his latest, and probably last chemo hope didn't work, and that he had a few weeks to a few months to live. Although we were understandably devastated, we continued on, making sure that he still met with his oncologist and regular medical doctor every week. Things had been going fine until this week. He started having heavy and frequent bowel movements. Two or three a day. On Monday, he started have a lot of blood in his stools. He didn't tell me how bad they were, but he stayed up for 4 hours on Tuesday, just going back and forth to the bathroom. Well, yesterday, he was feeling weak, and I had been telling him that he was more than like dehydrated, and I asked if he wanted to go to the ER. He finally said yes, and took a shower. I helped him get dressed, and let our sons know that they would have to help get him downstairs and into the car. We got to the hospital, and they gave him to units of fluids and started running tests. The attending dr. told us that they were definitely going to admit him. His blood counts were extremely low because of the lost of blood, he was extremely dehydrated, and it looked like his kidneys were failing. He was admitted to the ICU and was immediately given 2 pints of blood. By the time I got back there this morning, he had been given 3 more pints, plus plasma. The dr told me the following: CB is listed in guarded condition. He is pooping out mostly blood (the rectal cancer is now active. it had not been before); as quickly as they give it to him. His kidneys HAVE failed, and of course his liver is shot. Because his liver failed because of cancer, he is not eligible for a transplant. He has not eaten anything since yesterday because they feel it will only agravate his GI tract and cause more bleeding. The doctors don't feel they can do anything to help him, and his nurses said the same thing. They said that they think we should stop treating him, and go for making him comfortable, he can eat, and we can get Hospice involved. Ok, I am going to say this. Please don't take offense. This is just my opinion: My mom passed away in 2002 at the age of 72 from lung cancer. We realized that nothing was working and agreed to have Hospice come in. They came to the house on a Friday, met with my mom & me, wrote a prescription for Hydrocodone, had oxygen and a wheelchair delivered. I got the prescription filled and gave her the prescriped dosage to her that Friday night. Saturday morning, she had trouble waking up and was spacey the whole day. She died that evening at 8pm. I have always, always felt that I over medicated her and contributed to her death. She weighed 86 lbs when she died. The weight of an 11 year old. But she was given a adult weight dosage. When I called Hospice and told them what I thought, I was told that I didn't over medicate her, that she was in her active phase of dying How did that woman, from the telephone know that?). Truly, I was probably in denial and they knew that, but for some reason it just always felt like I helped my mom (with their assistance) to her journey. Now, I tell you this because I feel like the same thing will happen with my husband. He doesn't have any pain, so how will they MAKE him comfortable, and will they be trying to give him medications. This is scaring me. I tried to talk to CB tonight about what he wanted to do tonight. He is completely coherent, and he said his oncologist had come in that night, and he told her he didn't want to hear what she was saying and didn't want to talk to me about it. I told him I would do whatever he wants to do. This is extremely hard.

Thanks for letting me ramble.

**************************************************************************************************************************************************************************************
Well, it has certainly been an eventful few days. The drs and nurses said that I should stop treatment and to let CB quietly die. In my heart, that just didn't feel right, and I simply couldn't do it. They continued treating him, and on Sunday, the bleeding stopped completely, wih medication his blood pressure continued to improve, and a catherer was placed and he started peeing (sorry) like he was suppose to. He did so well, even his nurses were surprised. Now the hard part. Yesterday, we were told that he would be able to come home, but he would need Hospice care. His brother, sister-in-law and myself met with the Hospice rep and it was decided that they would help us. I did explain my fears, and was assured that I could decline anything I didn't feel comfortable with. This morning, I got there and his nurse (who use to be a Hospice nurse) gave him Morphine to make him comfortable (I hate that word!!)I lost it. I asked why she would give him that if he wasn't in pain. She explained that Morphine wasn't just for pain, but was given to him because it was ordered by his dr. to help him relax. He was out of it all day, kept asking what was wrong with him, kept trying to fight the effects! The Hospice coordinator came by his room, and I again explained my experience with Hospice, and what I felt happened with my mom. Her response: She thought that the timing was suspious and it sounded like assisted suicide to her! She assured me that things had changed and that I would not have to worry about that with them. All the equipment was delivered yesterday, and he was transported home today via ambulance. The nurse got here about 30 minutes after he got home and did a cursory assessment (how do you feel, any pain, anxiety) etc. Well, he was moving around alot and started breathing fast. She said that he was anxious and wanted him to take more morphine. Damn! I told her no. He was still drugged up from earlier, he was not in pain, and she would not be giving him any of that. As she was leaving, she told me that Hospice was not there to take over, but to help CB and us all. She promised she would not be pushing Morphine. The Hospice pharmacy delivered all the medication after she left and it all had something to do with delirium or pain. I'm going to ask tomorrow what they would do if he was allergic to this stuff. Don't get me wrong. I completely understand that there may/will come a time when he requires these drugs. I just don't understand why they are in such a rush to give these drugs. He is completely lucid, not in pain, moving around in the bed by himself. I can't take that from him. He was getting up out of the bed in the hospital, and he hasn't been up since yesterday. He told me toniht that he has to get up tomorrow. That just laying there is what's going to drive him insane. I told him he had a very trying day today, but tomorrow he could definitely get up and at least sit on the side of the bed for a while. He said, Carolyn I have to. I cannot just lie here. He is so strong!In the hospital, he sat our sons and myself down, and gave us instructions on how to go on when he dies! All about his car warranty, car payments, how our sons have to really step up and take care of me. We just let him talk. He really needed to do this and we let him. He has had multiple private talks with our sons and it has been really touching. Well, it's 10pm, we are sitting here discussing "The Good Wife" and he's ready to go to sleep. I'm exhausted already, and this is just the first night. On the positive: I am losing the 20lbs I needed to, and I'm getting very strong! Will check in soon.

Carolyn

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Carolyn,

I'm sorry to hear what has transpired over the past few days with CB. I can understand your dilemma of medicating CB now with hospice after what happened with your mother. Honestly, you need to let go of the feeling that you contributed to your mother's death. You did what you were told to do, and it sounds like she was dying anyhow. Now, with CB, if he's not in any pain, then I don't see why you would need to dope him up with pain meds. Definitely give them to him if he shows any signs of discomfort and/or pain, but I can see that keeping him more alert (if he's not in pain) probably would be best. He may get to the point where he does start to experience pain, though, so you will need to watch out for that.

My thoughts and prayers are with you right now- take care- you've got a rough road ahead of you for a bit.

Hugs,
Lisa

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

First let me say how very sorry I am for CB and you to be in this situation. Secondly, I was in this situation with my father and it is something he will have to decide for himself how to deal with. You can't beat yourself up over something you had no idea about. The nurses told you what to do and thats exactly what you did, end of story. You will do the right things with CB as well. It is never easy but being a caregiver is harder than being a patient. You can only do what he wants and as you have done for each other all of your lives, nuture and sooth him as he will you during this time.
Ramble all you want. This is a time when nothing seems to make sense, it all seems so surreal and so impossible to be happening. I wish you and CB all the special thoughts and prayers through this time that I can muster and always know that we are here for you both at any time. We love you both, Clift

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Please, please, take care of -yourself-.
Your husband would want that more than life itself.

May peace be with you both.

Our prayers are for you and your love.

John

mom_2_3
Posts: 964
Joined: Nov 2008

Carolyn,

My heart is breaking knowing that you and CB and your children are going through this. I don't really have any true words of wisdom or any profound comforting words. I can only tell you that since you joined this board, you and your family have never been far from my thoughts. And right right now I hold you all closely in my heart.

You cannot beat yourself up about your mom. My father also passed away from lung cancer and I always wondered whether he had too much morphine (he was taken care of at home by my nurse mother) but there wasn't really an alternate way for him. Unfortunately the cancer spread to his spine and brain and a couple of days either way was not going to change the outcome. By that time, however, we had all had talks with my father about his death so we all had closure. There are 7 children in my family and 6 of us were with him when he actually passed away. He was basically incoherent the last 2 days of his life. You did nothing wrong with your mom.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

This is a very hard time for you, made harder by your memories and misplaced guilt about the death of your mother. You have to understand, as the others have said, that you did what you believed to be the best you could for your mother and it was her time. To be blunt, it sounds like she had a blessedly comfortable passing, and it certainly could have gone completely different, and has for others. Please try to put your feelings about your mother's death aside as you tend to the needs of your husband. I know that's an impossibly difficult thing to ask, but I think that's the only way you are going to get through the difficult days ahead. You just have to trust your instincts to do what is right for you and your husband. It sounds like your husband is able to make decisions about what is right for him right now, and until he isn't, you can follow his lead. The Hospice staff can be very helpful in navigating the maze you have ahead, including books that might help you to understand the process of dying. Of course, if you feel strongly enough about not including Hospice, that's ok too, as long as it's a decision the two of you make together! You have done a wonderful job of caring for your husband thus far, don't doubt for one second that you will continue doing so! (((((hugs)))))
mary

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm so sorry to hear things are going this way. I'd really hoped and prayed for healing.

I don't know much about Hospice. I volunteer at a clinic that is (RN)staffed 100% by hospice nurses but that's it. We don't discuss their job. I would get 'established' with them just in case pain does become a concern, tho.

I know you are a woman of great faith and just wanted to tell you that I'll be praying for all of you during this time. May you rest in His peace.

Diane

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Carolyn,

I truly am sorry for what you and CB are going through. You have always been there for him and you won't make a bad decision. I agree with the others about your Mom. Please don't feel guilty. You need to forgive yourself. You did absolutely nothing wrong.

And I know you will do whatever is right for CB. You don't want him to suffer and you will know if he is. I hate this disease and I will be saying special prayers for your family.

Hugs and Healing,
Priscilla

cbcardb12
Posts: 85
Joined: Mar 2009

Bump

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Sounds like you are staying on top of this! Good for you for being such a strong and loving advocate for CB! Sounds like the Hospice team has a few things to learn from you guys! Your husband is leading you on this journey and together you will travel united, one day at a time! I know this is very hard, I pray for comfort and strength for you and your family.
mary

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Carolyn,
You are a strong and wonderful wife. I will keep you, CB and your sons in my prayers. I am glad CB is home but I am so sorry that you are in the midst of this.

Thinking of you.

Aloha,
Kathleen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Just letting you know I am still praying for you and your family for strength & that CB continues to be without pain.
Get some rest and take care of yourself too.
Hugs to you-

Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Carolyn,

You are in my thoughts. I am sorry you two are going through this.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm sorry Carolyn

I can't pretend to understand what the both of you are feeling at this time. Perhaps, he will feel like discussing this with you at another time.

I just can't find the words right now - keeping you both in our collective thoughts.

-Craig

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I'm so sorry that you and CB and your family are now going through this heartbreaking time. I agree with what others above have said about your Mother's death and how you feel now about hospice. It's very difficult being a caregiver, and as you have noted, you can be haunted about not doing the right thing. Your love and care and intent are what's really important though, especially right now, and you have demonstrated how big your love is many times on the board. You are doing the very best that you can in a very difficult situation. It will not be perfect, we are human, which is why we give thanks for love. Please let folks help you, under your direction, because one person cannot do it all. We all need one another. I'm glad that CB is able to be present for you and your sons right now.

Holding you all close in my heart, Leslie

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

Dear Carolyn,
My prayers are with you and your family. GOD will guide you.
Peace and Blessings,
Karen

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