Bob is losing the battle - help me cope!

bsrules · December 2004

Hello Everyone! I was going to post last night but I was in a very bad place and couldn't deal. I am doing a little better today. We went to the Dr.'s Tuesday and we got the answers that we needed to hear. We didn't like them but reality is knocking on our door and we had to open it unfortunately. His Dr. was very good with Bob and he helped him through the news a lot which I was very grateful for. I on the other hand held on until I was alone and then I lost it. The Dr. told him that he could be wrong as he proved him wrong before but the fact of the matter is that he has less then 10% of his liver working now and that he in giving him 1 month maybe 2. We are not giving up as he is tring to get the juicing down but he barely drinks anything anymore. He is so filled with fluid. His Jawndess went from 1.70 to 5 in 2 weeks. His liver emziemes are about 1500 now. He is really tring but he can bearly walk anymore. He is sleeping almost all the time now. I have tried to get him to talk to someone but he refuses.

I am so lost right now. I hold it together until my mind akes over and then I am a wreck!!! It is all I can do to get up in the morning and go to work at 5:00am knowing that my day isn't going to get any better. I can't wait till I get back home at 10:00am to see him. He is still sleeping and I can't imagin what life would be like without him!!!! I am so afraid of being alone!!!! I know that I shouldn't think that way but that is all I can think about right now.

He hasn't given up and neither have I!!!! I just am beside myself as to what to think.

I'm sorry that I am so depressing I don't want anyone to give up hope as that is what this is all about. It is just very hard for me to have hope right now. I see him going down hill so fast and he still tries to do things and it takes all he has just to get there. I help him around the yard when I can get him outside and get him set up with what he wants to do and he tries but can't complete it and that frustrates him to the point that he quites and doesn't try anything else for days. I want him to try but I don't want him to hurt himself to the point that he will end up in the hospital which he doesn't want.

Thanksgiving wasw ok. It was Great spending it with Bob but I had a very hard time with My step daughter and her mom. They took me aside and out and out blamed me for the shape that Bob is in now. They said that I wasn't taking care of him well enough to fight this. I thought that I was going to blow a gasget!!! I have to deal with that and then get the news from the Dr. on Tues. and all I am doig now is doubting myself and everything that I try to do.

I am sorry for bouncing around like a yoyo I am just not all there right now.

Please pray for Bob that if this is God's wish that he can go with dignity!!! I just don't know what to think anymore.

You all seem to help me when I need it the most!!! I am just rambleing forgive me!!!

Love and Prayers to ALL!!!!

Sue

shmurciakova · December 2004

Hi There! I am very sorry to hear about your husbands deteriorating condition. I know you probably don't remember me as I do not post on here all that often, but I can give you this small bit of advise from someone who has certainly considered the thought of what would happen to my husband if something were to take a turn for the worst with me. Foremost, I would be very reassured to know that he would be alright on his own. If your husband has had any of the same thoughts and feelings that I have had, he probably feels very guilty for putting you through all of this, even though clearly it is not his fault. I always feel like my husband got a "dud" when he married me, because only a couple of months after our wedding I was diagnosed. I am doing well now and God willing I will continue to. What I am trying to say is that I am sure it would be a great relief to him to know that you are strong and can get along with or without him. It is OK to be afraid and sad, but I am sure it would help him greatly if you could buck up and somehow convey to him that YOU are going to be alright no matter what. I do not know if he has exhaused all of his surgical possibilities or not, but you do not know what is going to happen, miracles do happen as I am sure you know. I know it is difficult, but please try to focus on how he is feeling. Put yourself aside for now and focus on him and what his impressions of your reactions are. You know? I hope I am not coming off too harsh, but that is what I would want if I were in your husbands position.
I wish you all the best, I really do. Please let everyone know what happens, because I am sure you have some others here who know your story better than I do!
Forget about his ex-wife and daughter too! What the hell do they think you were supposed to be doing? You are not God, you are not a doctor? Ask them what they would have done, better yet, ignore them and forget about them and yourself and focus on your husband. If I were you I would ask your boss for some time off too.
Peace to you and your family, Susan.

fedester · December 2004

hi sue,
sorry to hear about bob's condition. you have done more than alot of caregivers would have done,
you have always been there for bob and he knows that. you have done and will continue to do everything possible to help him. do not doubt what you are doing or have done, what have your in-laws done?? it's easy when you don't have to walk the walk like you and bob have done.
stay the course
stay positive
keep the faith
all the best
bruce

2bhealed · December 2004

((((SUE))))))

Hi honey,

This is where it can get confusing. This is where I was praying for God to take my sister one day and praying she would have another day with her baby. I walked around with so much guilt....was I praying enough...was I praying for the 'right' things. Was I being selfless or selfish?

Then my sister reminded me that this was her death and she got to call the shots. No matter how hard that was to hear it was what I needed to hear. So if he does not want to talk to anyone now I guess that you just need to respect that...as hard as that is for us to stand by and watch feeling helpless.

No one wants to talk death. But knowing me I would want to. I would want to discuss things and be assured that my hubby and kids would be ok.

But my sister didn't want to talk about it with me OR she was protecting me and really wanted to talk about it but thought I wouldn't want to....

Given the chance to do it again I would have rustled up the courage to approach the subject and see how she responded and if she shut down or opened up.

Talking about this doesn't mean anyone has given up. It's reality. We will all go through it eventually.

I second Susan's question: can you take some time off work for now?

Please do not allow the throughtless, cruel actions of the ex and daughter to stick to you. You do NOT need to be carrying that load!! It's not yours to carry anyway. But unfortunately they have decided that they will make you the target. I will pray their arrows are deflected from your heart.

Oh honey, my heart goes out to you both. I am glad you feel welcome to come here and share. We all need an outlet. I surely needed one and didn't have one.

Keep us posted no matter what. We're in it with you for the long haul.

peace, emily who feels your pain

nanuk · December 2004

Sue: I don't know where you are, but most areas have hospice organizations, and they are there to give both the patient and the caregiver help and support. Give them a call and explain your situation..if they are any thing like our hospice group here, you will recieve a lot of empathetic and caring help. best wishes, Bud

ron50 · December 2004

Dear Sue,
I would have been proud and honoured to have had you as my friend and caregiver, what Bob faces now we will all face sooner or later,he has fought very hard to stay with you and you have fought just as hard to keep him with you. All our lives we are taught how to live ,nobody ever tells us how we should go about dying. What you have done for Bob is priceless you are unselfishly sharing his passing and in doing so you will gain a legacy of allthe times you have spent togeather memories are not all good but they are all yours. I can only wish for peace for the both of you and life without pain ,my thoughts are with you ,have courage lady life will get better,Ron.

jsabol · December 2004

Hi Sue,
I'm sorry for you both right now; when my dad got this sick, I alternated between sadness and anxiety about every minute; feeling raw and overwhelmed and working to get a grip.
I heartily endorse Bud's suggestion...ask your doc to recommend and refer you to an at home hospice. My dad called his workers his "angels". These folks choose to work to help folks face their last months, as you said, with dignity and plenty of support. They help the family think straight and face all the little things that just add up and get so overwhelming. Please don't face this alone. Talk with Bob about giving it a try.
You are both in my prayers. Judy

alihamilton · December 2004

Hi Sue,

As I read your post and cried at your pain and fear, I realized how attached we become to our friends on this board. I am so sorry that you and Bob are going through such despair but no-one, absolutely no-one, could have done more than you have to care for Bob and make sure he got the best treatment available. Your step daughter and her mother are maybe feeling guilt for some reason but it was so cruel of them to speak to you like that.

I agree that time off from work is definitely what you need right now. Not only to spend precious time with Bob, but also to look after yourself. It is all too much for you and would be for any of us. Take this time just for you and Bob.

Stay with us as you walk through this difficult time. We love you.

shubunkin · December 2004

(((((hugs))))) words can not say how sorry I am you are having to go through this. I know how horrible it can be watching someone you love sooo much pass before your eyes. My mom died almost 3 years ago from colon cancer. I was her primary caretaker. I was there before the sun came up and well after it went down. It was physically and mentally draining and took every ounce of my soul to hold it together. She was and is still my best friend. We never did get hospice care for her and I think it would had really helped me out mentally if anything if we would had. I remember all the wonderful times we had but I also remember the horrible situations we found ourselves in during her sickness and it seems at night when I am laying there those are the images that pop into my mind. From her falling to the ground and not being able to get up because she had so much fluid she could not bend her limbs to me changing her ostomy bag and giving her baths. She was quite the trooper but when she had enough that was it, and she was gone that day. As long as Bob is willing and fighting that's wonderful. He will know when he has had enough. Like Emily said, there were days I did not want her to go, but there were days I prayed for the good Lord to take her. I never thought I could live without my mom but I have and it has made me a stronger and much more compassionate person. May God be with you and Bob. Danielle

littlejulie · December 2004

Sue,
I am SO sorry you have to go through this. I am even more sorry that Bob has to go through this. Sue - you did and are doing everything you possibly can. Gulit is a natural part of this. My thoughts and prayers are with you both and please take care of yourself. Scream when you have to, cry when you want to and love him as much as you can.

julie

StacyGleaso · December 2004

Sue,

I am sitting here crying as I'm writing this because I have several emotions playing right now.

First of all, you have been the best caregiver you could have been for Bob. I feel anger towards your step daughter and her mother, and would really like their addresses as I feel I need to take a little road trip to teach them a thing or two about life, and where they fit in it. They have NO RIGHT whatsoever commenting on how you have handled the situation. They have NO RIGHT to make you feel like you should have/could have done anything different or better. You are amazing, THEY are not.

Secondly, I can't say anything magical to take away your feelings of despair...I really wish I could. Cherish every minute of every day. Unfortunately, it took something like this for all of us to take that advice. Whatever the outcome, may you all find peace and comfort.

Stacy

Btrcup · December 2004

Sue, I am so sorry to hear what you are going through. You and Bob will be in our prayers. Please take care of yourself too! If you need a break, take a walk. Try not to drive yourself crazy. I know this is easier said than done, but please keep yourself healthy!

As for your step-daughter & her mother, excuse my language, but B@#CHES! How dare they blame you! Being a Jersey girl myself, I would have had to smack them!!

Linda (Baltimore)

Lisa Rose · December 2004

Btrcup said:
Sue, I am so sorry to hear what you are going through. You and Bob will be in our prayers. Please take care of yourself too! If you need a break, take a walk. Try not to drive yourself crazy. I know this is easier said than done, but please keep yourself healthy!

As for your step-daughter & her mother, excuse my language, but B@#CHES! How dare they blame you! Being a Jersey girl myself, I would have had to smack them!!

Linda (Baltimore)

Sue & Bob,
Your both in my Thoughts & Prayers at this very difficult time.

Lisa

Moesimo · December 2004

Sue, You are doing a great job taking care of your husband. do not listen to anyone telling you otherwise. Please get hospice involved. They are wonderful. Also cherish all your happy memories with your husband. I will continue to pray for you and your husband.
Maureen

deneenb · December 2004

Sue,

I am so sorry that you are going through this right now. As for the step-daughter and her mother, some people find it very easy and somewhat comforting to pass judgement on others. Particularly when they are feeling guilt. You have done a wonderful job. You have been supportive and strong and faithful. You pushed Bob when you felt it was for his own good(going to car shows) and you backed off when you felt it was warranted. You've been there for him, and with him every step of the way. You did research and asked questions and sought out additional opinions and advice. Sue, don't ever question anything you have done with regard to helping Bob. You have done more than many others in your shoes would have ever done.

Nobody knows for sure what is going to happen next. Spend as much time with Bob as you can right now and let him know that you are here for him and that you have not given up hope. My thoughts and prayers are with you both.

Best Wishes,
Deneen

juliababy · December 2004

I am so very very very deeply sorry. I will keep you both in my prayers.

Susana

scouty · December 2004

Sue,

You are truly amazing. I can not imagine being able to post the message you did when you did. Your love and courage for Bob is so obvious and wonderful.

I agree with others on the board...contact hospice care, take some time off of work, and ignore the wicked witches. I will make the trip with Stacy if she needs it!!!!

Get as much quality time as you can with Bob and with God!!!!

My sincere admiration goes out to you!!!!!

Lisa P.

RunnerZ · December 2004

I don't post often, but am a 6 year survivor of colorectal cancer and also lost my mother to the disease when I was in college. You are doing everything that you can do, and I have followed your posts throughout the last several months. You have been an admirable advocate and friend to your husband and made sure that he got as much out of life as he possibly could over the last several months. This is such a hard time. I echo the advice to take care of yourself. Make sure that you eat, get out once in awhile, and have a friend to talk to. Everyone here is so supportive...I wish you and Bob peace and love.

grandma713 · December 2004

Sue, I am so sorry. I agree with Emily about this being Bob's decision on how he wants to do this. You just have to assure him that you are there for him just like you have been every step of the way. FORGET about the cruelty of those two women. You only have to answer to yourself, Bob and God and I know you have nothing to question yourself about. My best friend's husband passed away a year ago from kidney cancer. She was there for him every second and we tried to be there for her, to hold her up and to just reassure her. Each one of our lives is numbered by God, nothing we can do is going to add or Subtract one day from the time God has allowed us. Rest when you can, hug him, sit with him and just love him. And dont give up. We will be here for you as best we can through cyberspace. I hope you have a church family or at the very least the support of loving friends and family for you.
You are in my prayers.
Franny

Unknown · December 2004

Dear, dear ((((((Sue)))))). I am so very, very saddened by your post because I, like everyone else, realize that there are no words that can take away your pain and make things better. But I will agree that as harsh as it may be, it isn't about you, it's about Bob.

First, you have been his angel right here on earth and believe me when I say he knows the toll his illness has taken on you and how strong you have been for him. Continue to stay strong and let him know that you will always love him and be there for him and most importantly, will go on and be all right without him. That, for me too, would be the hardest thing to do because, quite frankly and honestly, I cannot picture my life without Bert either. But in a sense, it will never be without Bert because I know that he will always be with me, should the powers that be deem he goes before I do.

Secondly, pardon me but screw the ex and your step daughter. Let them just walk a mile in your shoes for one day and see if they can do any better. To me, they are either uncaring or very selfish not to realize that you have done an outstanding job, that you are only human and can do only so much, and that YOU need support too!!!! Please, please, please, ignore them and don't ever doubt yourself. In reading your posts, your love for Bob shines through and there is absolutely no doubt that there isn't anything you wouldn't do to help him.

Third, and finally, seek comfort in your prayers and from people who know will be supportive of you and not critical. God's will will be done, no matter what. It's the same for us all....just a questions of when and how. Pray to him for the strength that you need to get you through this very difficult time and try to get some time off from your job so that you can spend this precious time with the one that you love most and who means so much too you. I know it can be difficult, but as you said, you can't wait to get home to be with him, so if you can, be with him.

Bert and I will both keep you in our prayers and please let us know how you are holding up. Feel free to e-mail me, if you should feel the need.

God be with you both.

Great Big Hugs,
Monika

aspaysia · December 2004

It is obvious to everyone that you love your husband very much and would do anything for him. Please call the hospice and get some help so you can spend quality time with him. If he becomes bedridden you cannot do all that heavy lifting alone.
We got a nurse for my father when the time came and he fell in love with her. He didn't want us fussing over him but did everything she said. It gave the rest of the family some breathing room so we could take care of one another.
So your relatives are playing the blame game. Don't let them put you on the defensive.
You are not alone. We are all on your side having been there as patients and/or caregivers.
I will be eternally grateful to my sister for all she did for me when I was sick. We were always very close and I love her more than ever.
Courage, my friend. You and your husband are very brave.

Bob is losing the battle - help me cope!

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