Hospice coming to our home
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Amy….I am so sorry. Know that we are all here. Sitting, understanding, all extending a cyber arm to wrap around you…
said a prayer for your Mom.Marjo
Amy,
You are being so strong. We are all here for you on this path. Please never feel alone when you have so many ears to listen and shoulders to lean on.I hope that your mother continues down her path free from pain and with her family around her.
Kris
Oh, sweet Amy, I am sending you hugs and prayers for your strength. You are such a good, loving daughter. Your mother must be so proud to know you are with her during these long, intense hours.
May you find some peace during this most sacred time, as you prepare your beloved mom for her next journey.
Jolene
Im thinking of you Amy,and knowing how you feel.It becomes a bit of a surreal sort of time and we get bursts of adrenalin to get us through.You are going so well holding it all together and I am glad you have good,supportive nurses and family with you
JanetWhat a nice thing for the nurse to say. And that shows you that you helped ease your mom along this awful journey. Our hearts and prayers are going out to you and you family.
Hi everyone,
Me again. Have had a very difficulte last few days, as many of you understand. Mom has gone down so quickly. She is so jaundice. Her eyes are glowing and leaking. He is sleeping probably 23.5 hours of the day. The other 30 minutes a day are when people (like me) are talking to her. She has no muscle strength and can’t walk at all. Thank God that Gary is able to work from home so that he can help me. My brothers have really stepped up to the plate. One of my brothers has been spending the nights with us. It is so comforting to have him here. The nurse came Tuesday and said that Mom only has a few hours/days. I spend most of my time sitting in a chair by her bed watching her breathing wondering which one will be the last. I am thankful that she isn’t uncomfortable. She is aggitated, but not uncomfortable. As I think back, I see symptoms of this coming on, but man it sure seems like this stage came on so quickly. I know how hard she wanted to hold on to see Max, but that just isn’t possible. Maddy is really struggling. She seems so afraid of Mom, which I totally understand. When I watch her sleeping her face looks like she is already gone. My heart is breaking. Of course I know that there is no turning back from this, but I wonder how I will feel when she is gone. Some part of my brain thinks, she is still alive, could she possibly come back? I KNOW that isn’t possible, and I know that sounds crazy, but I just can’t believe that she will be gone. My mom and I have never lived apart. My heart already aches because she is gone.
I called the oncologist and talked with her and talked with the hospice nurse about many of my questions. They were very helpful. They both were able to reassure me that unfortuantly this is the path that cancer takes sometimes, and that I am doing and have done all that I could to help her. The nurse asked me if I had ever thought about being a nurse because I have that special touch that has helped mom. While I told her that she was crazy, and that I could never be a nurse it did make me feel better
.I am so thankful for all of you here. My heart breaks for all of us that we are taking this journey together, but it sure is comforting to know that you all understand.
Please keep us in your prayers. Amy
Dear Amy,
Lainy’s advice is what I also would say to you. I think at this point, your mother’s wishes and keeping her as comfortable & pain free as possilble is what is most important. That and spending as much quality time with her as you can. This cancer is so unpredictable and no one knows what it will do next. All you can do is the best you can do with the circumstances you are given. Then know that you have done your best. There is no right or wrong. Only what you feel in your heart. Take care Amy and know that we are all here for you to help, comfort & support you during this stress filled time.
Love & Hugs,
DarlaNow I understand, Amy. You have done all you could, do not look back as no one has been able to figure out this crazy cancer. Everything, everyone is so different how would anyone know exactly what to do? Most of us live on our gut feelings, not very scientific is it? You did the best anyone could and the most important thing is to be at your mother’s side as you have been. Sometimes this CC monster shows no mercy. Make her as comfortable as you can and share good memories with her. If mom is at the end of her battle I believe the hospice nurse can explain things from that point to you. Not sure what would be accomplished by going to the doctor with questions now but you need to do what ever it takes to make you comfortable. How can anyone be selfish who has been a care giver to a CC patient? Unheard of. You have choices tomorrow. Take mom or not. Go yourself or not. I believe we know when our final days are ahead and perhaps mom feels this also and just wants to let it be. Again, you have to do what you are comfortable doing and listen to your heart and gut and any decision you make will be the right one.
P.S. I used to tell my kids when they had a big decision to make to make a list of pros and cons and see which one out weighs the other. It actually works.Louise, I have heard about Vista Home Care, and they were one of our choices. We went with Clarian Hospice. My grandma was with them a few years ago, and they were fantastic for her. Johnson County is VERY close to us. What a small world. I didn’t realize that you were from Indiana. Her regular nurse is coming tomorrow, I will talk to her also.
Thanks, Amy
Amy,
Typically, when hospice is involved, they have access to all the medical records from the referring doctor, and they will answer all the questions from all the family in terms you can understand. If you don’t understand, just keep telling them so, and they will keep trying. At least, that was the case for both of my parents. Are you by any chance working with Vista Home Care? They worked with my Mom (Carolyn Klotz) in Johnson County, IN, which isn’t far from you. Wish I knew what else to say that might help, but you already know that this is unpredictable stuff. At least, you have my sympathy and prayers.
LouiseLainy,
Mom’s oncologist has quite a few patients with cc. The surgeon who initially did Mom’s surgery recommended her. The surgeon was from John Hopkins, and dealt with cc a lot. We feel quite sure about her experience and knowledge about cc. She just knows that Mom doesn’t want to have any more aggressive treatment. She doesn’t want chemo or radiation. Both of them have had worse side effects for her than the cancer itself. She recommended hospice to us quite a while ago, since this disease is so unpredictable.
I wish that I had been more knowledgable about the whole process with cancer before this started, so that I would know what to watch for. Although I think cancer has a mind of its own. I know that everyone is different.
When Mom was released from the hospital last week the head oncologist for the cancer ward told me that with her symptoms and disease progression that she probably only has a few weeks left. I have been so hesitant to write that, because I don’t want to believe it. Although now as I see her deteoriating, I believe that he was right. I asked them not to tell Mom though because I didn’t want to break her spirit. I was too emotional at the time to ask him a lot of questions, because he caught me off guard. I wish that I would have been a little more on my toes, but it is too late now.
I guess that my main conern is wondering if it is really important for me to get answers now? We know that Mom is probably at the end of her battle with this horrible disease. Am I just being selfish wanting her to go the dr so that I can get answers? Even if there is something, she won’t want to do treatment for it.
Whether we go see the oncologist tomorrow or I call her, I do hope to get a little help from her.
Amy
Dear Amy we have all been gently telling you that you are not receiving straight answers. There, I said it out loud. The biggest question to ask the Oncologist is how familiar he is with CC. That is the biggest. Then just say you need to know exactly what is going on and if he is unsure you want a second opinion immediately. I just hate to say this but at the rate it has been going your mom is slipping and you will have not known anything. Is there someone else who can help you with this so that you don’t have to face it alone? Make a list of questions starting with the experience of the doctor, take someone close to you and go for it head on. IF you would like to talk then send me a personal e mail and I will give you my phone number, or email me with yours. Maybe it would help more if you talked it out. Sending strong thoughts your way. You are not alone we are all here but you are the one who has to deal with the Oncologist. You are a good daughter and I know you want to get your mother the best care you can.
Dear Amy, thinking of you and your family. Sending you love and hugs and praying for your strength. We are all with you right now, holding you up.
Jolene
Thank you for all of your responses!
Could it be I am not getting a lot of answers because they don’t really know what is going on? I know that tumors in the liver/bile duct can’t be picked up on ct scans and so on. Could it be that her most recent radiation hurt her liver? Mom has been having a lot of pain on her right side for months now, maybe that was a sign that we didn’t catch. Mom doesn’t want to go to the oncologist tomorrow, she doesn’t feel up to it. Also, I am not sure that physically she can make it. If we don’t go, I guess that I could call the oncologist and talk to her about some more of my questions. I don’t think that Mom could go through any sort of procedure. She also doesn’t want to. I am not sure how much the hospice nurse knows about cc. I think that we have the experts here on this board! Thankfully they started her on oxycontin and she isn’t in pain. It seemed to do the trick. She will have to start morphine in a a couple of weeks because hospice said they don’t pay for oxycontin. The price went up 900% or something stupid like that. So, thankfully she is quite comfortable. Now that I think back she has been very uncomfortable for a few months, but we just kept hoping that the next day would be better. I just don’t want her to die and me have all of these unanswered questions, but is that selfish of me to think that way? Do I really need to be worried about what “exactly” is going on, or should I just be spending all of my energy focusing on spending this time with Mom? I keep thinking that this came on so quickly, but maybe it really didn’t. Let me just say it now, not that I haven’t said it a million times already… I HATE cancer!
Thanks for helping me,
Amy
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