February 15, 2009 at 12:10 am #26227carol58Participant
To all my dear friends, there’s just no words to express my gratitude. You’re always willing to listen and support or just let me cry and rant. Thank you all so much. If I didn’t have you to turn to, I’d be more of a wreck than I am.
Tanoland, I’m so sorry. I know you miss your sweet sister terribly. Lainy, Darla, Jan, Marion, Karen, Joyce C., JoAnn, Pauline, and our precious Jeff G. thank you for your kind words of wisdom and strength. What a blessing that Charlie continues to be pain free.
I close my eyes and imagine Charlie, Jeff and Rob walking down a golden path together on a beautiful spring day heading to the arms of our Dear Savior. What courageous wonderful men they all are!
CarolFebruary 14, 2009 at 10:30 pm #26226lainyParticipant
WE LOVE YOU, JEFF!!!!February 14, 2009 at 9:28 pm #26225jeffgMember
Dear Carol, I had a bunch of things to say but I’m not. I feel the shell growing around me as well. Like you said, it’s God’s time. It’s like we have said all we can, have Faith and understand and now wait. To debilatated to do anything and it’s like time is sitting still but we know it is not. It’s a lonely little place. Bless you guys!
Love and Faith,
Jeff G.February 14, 2009 at 10:02 am #26224paulineMember
Dear Carol and Karen,
My heart breaks to read your posts as I remember my darling Anthony suffering from such terrible pain and confusion in those last few awful weeks of his life. I am crying now as I picture him – so brave, still cracking the occasional joke, hugging me and fighting all the way.
All I can say to you both is that this is such a precious time that you will re live over and over again in the future. Here is my advice:
1. Try to get some help so that you can sleep and be at your best for him.
2. Make those resonsible for his care aware of every pain and problem he has and don’t let up until he is as comfortable as possible.
3. Think of all the things you want to say to him and say them.
4. Spend every moment you can with him and make beautiful moments to treasure for ever.
Take care both of you!
PaulineFebruary 14, 2009 at 4:35 am #26223joannMember
My father died Feb. 8th after a year long battle with CC. I was able to help my parents by staying with them for the last 2 months of his life. I know the emotions you are feeling. And I want to tell you that they are real and a valuable part of the healing process. I watched my father go from a vibrant, healthy, go-getter to a frustrated, angry bed-ridden man. Frustrated and angry at a disease that we had little opportunity or know how to fight. He so wanted to live to be one of the first to try the Kanzius treatment. He wanted to live and fought with every thing he had to stay here.
That said, when the pain and suffering get to be too much, it was easier to let him go. As painful as it was — and is–the time comes when letting him go was right. You and your family will know, just as we did. Being the caregiver is such a blessing and a curse. It makes all of the disease real and “in your face”–but, you know that you have provided all the love, care and support that you can–and that brings a great sense of peace.
Take care of yourself too… and call on your family and friends to tend to all the other things that life asks of you. jkFebruary 14, 2009 at 2:11 am #26222jcleggMember
Carol and Karen,
My heart breaks as I read these postings. This “pre-grief” is exactly what I went through with Butch just a short time ago. I pray that God will give you all strength to bear up, and comfort you in your sorrow. We will pray for a cure for this monster, and, in the meantime, write whenever and whatever you like – we will be here for yu.
Joyce C.February 13, 2009 at 12:34 pm #26221karenParticipant
I can totally empathize with you. I too am watching my husband and best friend waste away. The other day he stood up and his pants just fell to the floor, mind you they were buttoned and belted. He has terrible pain, but no tumors can be found to treat. He has had three rounds of Cyberknife treatment (all in different areas) and I sometimes wonder if the pain is nerve damage from the extreme radiation. We are going to a new pain management doctor today as the last one could not help the pain to subside. The weight is just melting off of him. He does eat and drink Ensure, but he is loosing weight. He sleeps most of the time…I used to think it was the pain meds, but I think he has no stamina left.
We left our home in New Jersey in December to have a 5 month mini retirement in Florida knowing that we were not going to be able to enjoy each others company when retirement age will actually be reached. December was good…we went boating and riding dual sport bikes and watching the waters of the Gulf together, but I could see the fatigue. January and February to date have been so painful for him. This is a very heartbreaking process to watch. I pray constantly that his pain goes away.
I am sorry for babbling on. I just want to let you know that I feel your pain as I do my own. You are not alone. I ask the Lord to give me the strength to take care of Rob and make his journey as easy as possible. I will pray this for you and your family as well.
Lord, please help man to find a cure for this and all cancers and until that can happen, please provide comfort to the suffering.
KarenFebruary 13, 2009 at 5:27 am #26220marionsModerator
Dear CarolFebruary 13, 2009 at 1:21 am #26219walkMember
I have been keeping up with you and Charlie on your blog. I wish I had some words of wisdom, or even comfort. I can tell from your blog posts that your family is surrounded by love and support.
Prayers and wishes,
JanFebruary 13, 2009 at 12:25 am #26218darlaParticipant
I think you are right, you are already grieving. I have discussed this with others where they had to deal with this horrible disease for any length of time & they felt that the grieving process started for them well before their loved one actually passed on.
My experience was so much the opposite of yours. My husband passed on within 7 weeks of when he first showed symptoms. He appeared to be normal & health until then except for a few aches & pains & a little fatigue, but at 62 you think that is just normal. We really thought they would find out what was wrong & fix it. Even after he was diagnoised, we thought we had atleast 6 months. He passed away 1 week later. For him that was good, as he only suffered for a short time, however, it has been over 5 months & I still can’t really believe this has happened to us. I am having a very hard time now with my grieving as I was not prepared at all for him to leave me so soon.
I don’t know that either situation is better than the other or easier to go through. It is so very hard no matter what. Losing a loved one to CC has got to be one of the worst experiences anyone can go through. I didn’t even know I would be losing him & thought we could handle what ever we had to face. Now I am facing life alone.
In some ways I am grateful that he did not suffer long & that I did not have to watch him deteriorate for many months or years, but then again I think we didn’t have the time to adjust to this & to say & do all the things we would have wanted to.
Unfortunately we aren’t given a choice in these matters. We just have to deal with what we are given. I am so sorry for what you & your family are going through, but believe me when I say that I do know how you are feeling & truely understand. Try to stay strong & to take time for you too, so you can be there for Charlie & the rest of your family.
I will keep you & your family in my thoughts & prayers. Remember we are all here for you when ever you need us.
Love & Hugs,
DarlaFebruary 12, 2009 at 11:46 pm #26217lainyParticipant
Dear Carol, I wish there was some magical potent I could send over to you. Perhaps along with the memories of what used to be and seeing what is now is the fact we are totally worn out care givers. We are no where at your point and some days I just want to have a pity party. Of course I don’t and it passes over. Maybe you need some relief like going somewhere quiet in the car and just letting loose. Wish I had some word of wisdom other than to tell you we are here for you to vent. Thinking of you and yours………………February 12, 2009 at 10:52 pm #26216tanolandMember
You expressed exactly how I felt watching my sister fade away. It was 11 months from the time she was diagnosed to the day she died and she was never the same person from that day on. She was not happy, no matter how hard we tried. Her entire personality was different. A vibrant, care free, loving beautiful person to a worried, sad, scared cancer patient. I am so sorry for you and your family. Absolutely the worst thing in the world to watch someone go through.February 12, 2009 at 10:41 pm #1997carol58Participant
Is there such a thing as pre-grief? I’m sure there’s a fancy name for it. There are so many things I’ve mourned the loss of – going out to eat, seeing a movie, walking together holding hands, intimacy, talking over the day, discussing our kids, sharing concerns, finances and the list goes on and on. Charlie is becoming a shell of his former self. Does that sound awful? Ben (our 17 year old) said it brings tears to his eyes every time he sees his Dad going down the hall with his walker. Charlie tried to tie Ben’s tie for Senior Day and couldn’t remember how to do it. He said, “I’m just withering away to nothing.” That was so sad. The deterioration of a loved one is a very hard thing to see. I went through it when I was 17 with my Mom’s cancer and this is worse still. What does it feel like for Charlie? Day in, day out, waiting to die. He’s not afraid. He’s ready to go. It’s just in God’s time and he could have days, weeks or months left. This has got to be one of the hardest trials to go through. Some days I just want to stay in bed and not get up. It’s painful in a physical gut wrenching sort of way. My heart breaks for everyone touched by this cancer. I’m so thankful for the life we’ve had and all our many blessings. Nevertheless, Charlie’s loving wife of almost 27 years and best friend is starting to crumble. It’s almost too much to comprehend that things can get a lot worse before it’s his time and how to handle it.
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