CSN Login
Members Online: 10

Bob is losing the battle - help me cope!

bsrules
Posts: 296
Joined: Mar 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's picture
shmurciakova
Posts: 910
Joined: Dec 2002

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
Posts: 736
Joined: Jul 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's picture
2bhealed
Posts: 2084
Joined: Dec 2001

((((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's picture
nanuk
Posts: 1363
Joined: Dec 2003

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's picture
ron50
Posts: 1280
Joined: Nov 2001

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's picture
jsabol
Posts: 1156
Joined: Dec 2003

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's picture
alihamilton
Posts: 344
Joined: Jan 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
Posts: 60
Joined: Aug 2003

(((((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's picture
littlejulie
Posts: 311
Joined: Mar 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's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

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's picture
Btrcup
Posts: 287
Joined: Jun 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's picture
Lisa Rose
Posts: 589
Joined: Mar 2003

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

Lisa

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

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
Posts: 130
Joined: Jun 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
Posts: 130
Joined: Sep 2004

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

Susana

scouty's picture
scouty
Posts: 1973
Joined: Apr 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
Posts: 185
Joined: Feb 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
Posts: 105
Joined: Apr 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

aspaysia's picture
aspaysia
Posts: 257
Joined: Nov 2003

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.

jana11
Posts: 708
Joined: May 2004

Sue, I am so sorry you have to go through all this. Bob is VERY lucky to have you; tough as it is. You are a caring and loving wife, just what Bob needs - to feel loved and cared for. Continue as you are... you are doing it all correct. I agree about hospice. It is a wonderful program to help Bob and his family (you). They have programs that can set up at the home, or at the hospital; if needed. Talk to his doctor about talking to a program. Don't be hesitant - it is such a good and supportive program.

One note about the ex-wife and step daughter: try not to feel ANY guilt. They are simply taking out there sadness and their own guilt out on you. They didn't offer to help, so they aren't really worried about your ability to care for Bob. They feel sad and angry about loosing him and unfortunately, released it in such a negative manner.

You are beautiful. You can't make the cancer go away. You can only be supportive and care for Bob - as you are doing. Ask the MD for help. Make sure Bob doesn't experience too much discomfort. And try to enjoy every moment you have with him. Come to us anytime you feel overwhelmed. GET SUPPORTS FOR YOU, SO YOU CAN SUPPORT HIM!!

You and Bob will remain in my thoughts and prayers. jana

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Dear Sue,
My heart is aching for you! I am so sorry that the family members are not being more supportive and I am so sorry that you ad Bob are facing this scary time with no help. I am thnking of you and Bob and praying for you and I wish there was something I could say or do to help. I am sending you hugs and all the good thoughts I can muster. Hang in there.
With Love and Peace,
Taunya

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Dear Sue---sweetie--there is absolutely nothing you can do that you have not already done. Your loving Bob knows that!
Maybe your stepdaughter and her mom know that and that's the reason for their remarks. Just maybe they are feeling a little guilty?
One day cancer may take my life and I know that Jen will do whatever it takes to make me feel comfortable. I know sincerely Sue that Bob's own thoughts even now are centred on your wellbeing and how you will continue to cope no matter what happens. Even though my time with Jen may be long or short I NEVER stop worrying about her future--that has got to be on Bob's mind--I would guess his love for you Sue is foremost in his mind!!!
On the other hand Sue---cancer sufferers know with absolutely no doubt that the carers position throughout this horrid disease is in a lot of ways tougher than sufferers fighting it. Sure--we endure surgery/chemo/tests/meds etc and all the pain thast goes with it--but you know Sue--the greatest pain for us is seeing our carers and loved ones being afraid and in total helplessness toward our situation. Bob knows this sweetie--Bob knows that you are suffering too!!
Remember Sue that no matter what happens--much of Bob's pain is knowing he is not able to help you endure yours just as you are unable to help him. Sure--you both try very hard--but there never seems to be enough words--but you both know that!
Just as there are no words Jen and I can say to help you--I mean REALLY help you.
but we keep trying Sue!!---all our love/ huggs and prayers, Ross and Jen

steved
Posts: 836
Joined: Apr 2004

Sue I have followed your difficult journey closely over recent months and have admired your strength through out it- you are a role model to so many of us here. My heart goes out to you at this time.
Prognosticating is so hard for docs and so inaccurate you never can say what will happen but there is often some reassurance taken by family and patients in knowing a time frame to work in.

It means it is really time to focus on quality- finding any way of improving Bob's enjoyment of the time left you have together. Put aside family difficulties - they can be dealt with later and will only sap energy that you will need to cope with the time to come. Use your energies constructively to spend time with Bob doing somehting that brings joy to you both- even in a phyically frail state there are often things you can do together- look at old photos, talk of good times etc.

Take some time for yourself too when you can. The next couple of months will be hard and you need to be as robust as you possibly can for it but you mustn't let yourself get overwhelmed or too tired as you will be of less use to Bob. take some to to re-energise yourself even if it doesn't feel like the right time to be focusing on yourself- it is still important.

Look for supports that are strong too- hospices and palliative carer teams often can provide valuable advise and phyical as well as emotional support. Use us as often as you need to as well- we are here to take your woes and fears when ever you need us. Use us to unburden yourself of those thoughts that will plague yo and those fears that eat away.

but most of all just be there for Bob- there is no magic answer to the best way to do this but use your instincts as you know him better than anyone. Let us now how it all goes and we will be thnking of you here in the Uk,

Steve.

livin
Posts: 319
Joined: Jan 2003

Iam sorry for you and your husbands bad news that was recieved. You are a strong loving caregiver and wife who has did everything in your power. I agree with everyone to check into Hospice. May the lord continue to be with you in your time of need. livin

andreae
Posts: 238
Joined: Sep 2003

Dear Sue,

I do anger well, so I will begin with that emotion. I don't know where those two get off, but you are a wonderful, devoted caregiver. Do not think otherwise! Perhaps they are projecting their own issues? Regardless, do not give their comments another thought. I hope that, despite the cruelty, you enjoyed some of the day.

I'm so sorry to hear about Bob's deterioration. I wish there was something that I could say or do... Please know that we are here for you. Know that you are in our thoughts and prayers. May you find comfort in the fact that there is ALWAYS hope. Sometimes, hope will change. You can hope for cure, you can hope for palliation, you can hope for less suffering... There is always hope. Enjoy your time together. Do let not let the doctor tell you that there is nothing he can do because there is always something that can be done to make Bob more comfortable. The love that you and Bob share is obvious. I believe that love can conquer all. May love and hope light your way.

Make sure that you look after yourself as well. Get the help and time off that you need

I am thinking of you and Bob.

Love,
Andrea

Edina77
Posts: 13
Joined: Oct 2004

Dear Sue,

My heart goes out to you and Bob...
I have no words that could explain how sorry I am for what you are going through.
I will keep you and Bob in my prayers.

Hugs
Edina.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network