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How do I do this

donnare
Posts: 266
Joined: Jun 2009

So I know my husband is dying, I'm shocked by how fast this seems to have come. He was so healthy for the past three years, handled the chemo so well, I told myself I wasn't hoping for a cure, but obviously I was hoping for something of that nature. He doesn't want anymore treatment, not that there is anything left anyway. His bilibrubin levels are too high for any clinical trials, and standard care chemo stopped working months ago. My daughter wanted to know how long he had, so the doctor asked him how long he felt he had. He said he thought til about January and she agreed it was probably an accurate time frame.

I am upset by how crazy I feel. It is not like I didn't know this would come at some point, but I am devastated, scared, angy and completely out of it. I don't want to see or talk to anyone, and I cannot imagine ever being okay again. My heart is broken and will never heal.

I have no clue how to do this, no clue how to accept that he will be gone. No clue how I will ever be okay again. Hospice is coming out tomorrow, I have to start thinking about wills, and power of attorney, and all this other crap that I have been putting off, and all I want to do is climb under the covers and stay there until I can face the world again if there will ever be a time like that. It would be great if I never had to leave my house again, but I will probably have to sell it and move anyway. My life, the life we planned so carefully and worked so hard for, is disappearing right before my eyes, cause I feel like without him there is no life for me. Just loneliness.

It is not fair, he's only 55. He is being robbed of everything he worked so hard for - seeing his youngest graduate from college, walking his daughters down the aisle, seeing his grandchildren, enjoying his retirement after working his tail off for years for his family and planning for their future.

He is so weak, and so tired, and his liver is failing, and there is nothing I can do to help, to make it better, to make it stop, to fix it. I am completely helpless, and I am becoming paralyzed by the pain, fear, and loneliness ahead of me. I cannot imagine that I will ever be okay again.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I wept when I read your post. I am so sorry for what you are going through. I had and have those exact same feelings though my situation is different...I lost my 29 year old son (only 25 when diagnosed) to brain cancer on October 15th. It will be four weeks on Monday. I too was shocked at how fast the end came--he had handled chemo well and it had worked so good for two years...until the recurrence in July of 2011. It was all downhill after that.

I realized when my son died that I had not given up hope that he would make it. That maybe, just maybe, there might be a miracle for David and he would beat brain cancer. I can't believe how shocked I was when he died. I thought I had known and understood that he was going to die but I was very wrong.

We fought so hard and I feel the same way as you do..that nothing I did could stop it or fix it or make it better. I have never felt so helpless in my entire life.

People tell me that it takes time and I'll feel better eventually but right now I just can't believe it. My heart and my life have a huge hole in it and I don't think I will ever recover.

I wish I could help you. I wish it so much. Please know that you are not alone, that others feel and understand your pain. I will be thinking about you and praying for strength for you to face your desperate situation. Please post again and let us know how you are doing.

love, blessings, strength and peace to you,
Cindy in Salem, OR

grandmafay's picture
grandmafay
Posts: 1617
Joined: Aug 2009

I relate to so much you are writing. I lost my husband to colon cancer three years ago following a six year battle. When he was first dx with stage 4, I remember hearing over and over in my head that we were not going to grow old together. I accepted in my head that we were just buying time, but my heart wished for a different ending. When hospice became a reality, I though I was ready, but I wasn't. I've decided that we are never really ready to lose a loved one. He survived longer that anyone expected, but shorter than I wanted. We had been married for 42 years. He was 63. I, too, wondered how I would go on without him. I knew, though, that I had no choice. I have two sons and daughters-in-law and four beautiful granddaughters. After three years, the pain has mellowed. I am still grieving, maybe I always will be. Somehow, we do find the strength to continue. My husband had a very strong faith and he faced cancer and death with courage and a sense of humor. I knew I had to do the same. You will, too. I know the fear and feeling of helplessness. You have already begun to grieve. Try to live in the now. He is still with you. You can still hold his hand and tell him you love him. Don't sacrifice that. Believe it or not some of my best memories come from our last month together. We went to Yosemite just days before he passed. He was in a wheel chair, but he got to look at that amazing scenery once more and stay in the Ahwanee Hotel, one of the last things on his bucket list. Hang in there. Remember that we are here. If you need to talk PM me and we can share phone numbers. This time is so hard for everyone. Hugs, Fay

dianelynn41's picture
dianelynn41
Posts: 71
Joined: Jan 2011

I'm in the same boat you are. Roby had some radiation treatments a few weeks, hoping to shrink tumor just for some comfort. Well one morning woke up and there was loose stool that had started draining from where rectum use to be and where tumor has been protruding for months. Well he spent 3 days in the hospital last week, hoping to have surgery to repair a fistila that had developed between small intestine and bladder (already a fistila in bladder) well they couldn't do anything for him. Said it was a "terminal event", said an infection would set in at some point that we couldn't get rid of. The surgeon said this would happen sooner than later. He said if it were him he'd stop chemo and go home and get on hospice, well he's not Roby.

So with all the drainage and everything he's been through he's sleeping alot and stays in bed all the time. Says he doesn't feel bad just tired.

The home health care nurse will here tomorrow and we will talk hospice (maybe). Roby is really resistant to having hospice. I told him if he doesn't want them we won't do it, just keep on doing our best on our own.

But Roby wants to hang on till at least the end of the year, the kids and grandkids are all coming for Christmas. He has 3 daughters, 3 son n laws and 7 grandkids. We didn't have any of our own.

I'm at a loss of how to do this. I don't know what to expect and I'm scared I'll make wrong decisions. I just want to take him and hide from cancer for awhile. I'm already missing "my" Roby, he's not been the same for awhile. Just breaks my heart, can't imagine what life will be like without him.

It's taken me days to write this because I don't want to admit what is happening.

5417
Posts: 2
Joined: Nov 2011

I have to tell you mine is the same sad story. But hospice cam take away so much of our fears. We have had hospice for about a month and they have been such a resource for me. I think the scariest is thinking about how it will end. But I am assured they will be with us and they will know. That is a comfort to me.

We have been married 42 years and he is my life, he is my everything. Nothing will make losing him easier. I just don't want him to suffer.

DH did not want Hospice either, was very offended when it was brought up. But I can tell you he is very happy with them.

grandmafay's picture
grandmafay
Posts: 1617
Joined: Aug 2009

I was where some you are now about three years ago. At first, hospice feels like you are giving up, but it really isn't. It is an acceptance that you have reached a point where you need help dealing with what you know is coming. You can also remind your husband that you don't have to stay on hospice if you decide it is not right for you. I really appreciated the 24/7 phone number. I called it several times, mainly to confirm what I was thinking or doing was right. Also, hospice is really the experts on pain control. Ours was very responsive to our needs, too. We live in a rural area over an hour from any large city. I called for a hospital bed on Saturday morning and within two hours it was here and set up. All the medications and oxygen were delivered to our door. Other services were available, too.

Now the other part, the fear. Yes, I remember that. We were married for a little over 42 years (twice as long as we were single), and as one neighbor said we even liked each other, too. We had both retired, and cancer was not in our plans. We were supposed to grow old together. Contemplating a world without him was almost unthinkable. Losing him was my greatest fear. My emotions during the six years my husband fought cancer were on that roller coaster we all know. When my greatest fear,happened, I somehow was able to cope. That doesn't mean that I didn't grieve. It has been over three years, and I am still grieving. My grief has mellowed, and the pain has lessened. But it is still there. After he was first dx, we made sure our affairs were in order. During the last few months, we,talked about the things I would need to do. He even told me what he wanted on his grave marker. He had a great sense of humor and may have been kidding, but Daffy Duck is now set in stone.

I don't know if any of this helps. I'm not sure there is anything that can help. My only real advice, for what it is worth, is to tell him how much you love him, hold his hand, and cherish whatever time you have left. My thoughts are with you. Fay

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hello and welcome to you your husband and your family. I was a caregiver for my dad, Ray. He passed from esophageal/liver cancer in March 2010. Wow..almost 3 years ago! I love to still come here, to keep in
touch, and to help others like yourselves. I know you have heard this before, but you are not alone. We are here for you always. You can lean on us. Lean on God. Let Go and Let God. It is a horrible, horrible disease for sure. You and your husband have done the best you could. If this is the end, then it is. You need to call on hospice. Hospice is absolutely wonderful. They will help all of you accept this part of his journey. Hospice will make it easier for all of you. Let your husband make the decisions now. Leave it up to him. Whatever he decides. Keep in touch. We will be here looking for you! And many many thanks to Fay...she and I met here 3 years ago! She is a wonderful person!
Tina in Va

AngKad42
Posts: 26
Joined: Jan 2011

I too, have joined a club no one wants to join; my husband is 42 and we have been married for 21 years. And now I have to watch him leave us; my kids are 20, 19 and 16 and all are still here at home. Last month when they sent my husband home from the hospital with the news that his chemo was no longer working and they couldn't do anything else for him, we sat the kids down and told them. My middle son,19 is deaf and it was very difficult for him to understand. He knew Dad was sick, knew he had cancer, but my husband had been fighting so hard for the last 2 years and was still up and able to do things even worked a little; to come home from the hospital(after going for a routine doctor visit and being told we would only have to have him in the hospital for the weekend because he needed blood and they wanted to do some scans.) we ended up being in the hospital for a week and when he came home, Dad couldn't walk and suddenly we have a hospital bed in the living room so it was confusing for him. It was very difficult setting the kids down and telling them that nothing else could be done for Dad, and he told them he was going to fight for as long as he could to stay here with us. And he has fought hard, while still being the same Dad/Tom that we all know and love. Joking with everyone, being his smart ass self and just telling us all how much he loves us. He has cried with us, apologized for putting us through this (like he choose to get melanoma?!?!) and told us all how he will still be with us and watch over us; but insisting he wasn't going anywhere anytime soon. He was eating, getting out of bed with help,(he has a severe case of lymphedema in his right leg and his groin area; they can't even put a catheter in) and then Monday night/Tuesday morning everything changed. He couldn't get out of bed even with my help; and just the look on his face was different. Today his nurse confirmed what I had suspected that he has brain mets. He is aware of things and can still talk to me but can not always find the right words he wants to say, which is frustrating for him. He has stopped eating, is sleeping a lot and because he can not stand up to use the bathroom, we have to roll him to change the bed linens and that is very,very painful for him. I knew that none of this was going to be easy, it gets harder everyday; but when he was first home, we could spend the day talking and watching movies together, cry together and I told him, when the time came, not to hold on because of us, we will never be ready for him to go, but it would come time he would be ready. We raged together about how unfair this was and no one should ever have to do this, no one deserves to go through this. Now, he sleeps most of the time, he doesn't really look like my big strong Tom, he joked a little today, but mostly he is kind of day dreaming and talking about things from the past, struggling to find the correct words, getting angry when he can't and sometimes he asks me where he is, what is happening, he even stated " I think I am sick, honey." Today, and when I cried in front of him, he got upset,even a little angry with me. Our families live fairly far and while everyone has visited in the past few weeks, no one was here the past couple of days, so I had to call his mom and his sister and tell them what was going on. His mom called his brother, who had just spent the weekend with us and Tom and him had a great time. He was very surprised to here how quickly Tom had changed and I am not sure he believes it. He told his mom that he thought Tom just needed to recover from the weekend. And at first I was hoping that it was that he was tired from the weekend. But the look on his face is different and I just can't explain that; he just doesn't look like my Tom.
I am sorry Donnare that you have to be a part of this club, I wish no one ever had to go through this. Cancer is an evil, nasty beast and the government needs to put more money and resources into a cure. No one deserves to get cancer and no one deserves to have to watch a person they love go through this. I learned a long time ago, as most of us have, that life isn't fair but this is insane and it's unbearable. I believe that we are supposed to learn from difficult times and that life or God is always teaching us things and that God never gives us more than we can handle; that belief is being tested because I don't know what I am supposed to learn from this and I have no idea how I will be able to go on without my best friend, my confidant, the one person in the world who accepted me for me, loved me unconditionally, and was always there when I needed him. What do you do when half of yourself is gone?!?!? I have no idea why God thinks I can handle loosing him because I really don't think I can. I mean I know I won't do anything to myself, my kids need me; but this pain of watching him leave me I know is just the beginning of the pain that will be there when he is gone.
I am sorry I have no words of wisdom to share, only to say you are not alone in this. And we can rant and scream and cry together. I don't know if knowing you are not alone will help any, maybe not right now, but maybe in a little while it might help knowing that there are others of us who understand your pain and are sharing in it. I have found that most people are more compassionate than I thought before all of this. I have had people I never met before, but who are part of this group and others who just tell me they are praying for us and that if I need anything to just call on them and I have vented to some of them and was embraced with love and understanding. So rant to us, cry with us and we love you and we understand you and where you are and maybe making this terrible journey together will help with our pain. I guess that's all I have to say for now. I love you and I will pray for you and your family and will be here if you should need me, and I share your pain and grief. Angie

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