~This Sounds So Terrible Of Me, Please Forgive Me

Believe51 · 08-26-2009, 09:56 PM

This will be short because I do not want to get myself going since I have remained pretty focused and grounded lately.....

I wish that this man would either overcome this...........or that he is spared and taken quickly.

I cannot take much more of seeing him like this and I really think it is because he does not want to leave me. Never did make it to the OncoMan on Tuesday, rescheduled. I'm telling you that my feelings will not change even if his brain is miraculously clean. He cannot and should not be living like this.

There I said it and I only said it because you have known me for 2 1/2 years and my thousands of posts have proven the love I have for this man. I love him with everything I have and do not want to see him leave. Please God, let it be me now that is the only one hurting. Gotta go before tears fall.>>Believe51

PS: Although I have always been an independant woman, I am scared shitless to move on without him. (Oops, first bad word too but I'm going to leave it there...smiling)

Patty F · 08-26-2009, 10:08 PM

Marie
Your post breaks my heart. You are not a terrible person for loving the mighty oak so much that you do NOT want to see him suffer. I really think this journey is much harder on the care giver than the person with the cancer. All the care giver can do is love the other person. They feel helpless.
Marie please know that your posts inspire so many of us. The raw emotions that you share with us is priceless. Please know that BOTH of you remain in my prayers. Tonight I am saying a special prayer that you both will have peace and comfort during this time.

Believe51 · 08-26-2009, 10:32 PM

I want to add that seeing him like this is not fair to me either damn it!! I want to move on with my life, with or without him, this is not his fault and I place no blame. My quality of life is borderline sucking right now! I did not mind all the sacrifices, giving up the motorcycle or the Cadillac (wah-smiling), I could live without the romance and the copious amounts of sleep he does, I could live without the normalcy and through the difficulties, I did not mind losing sleep or having my body, my face take a beating aging me for what seems like 10 years. I am tired My friend, in my heart I cannot live seeing him like this anymore. I am not losing my fight, but I am tired.

I did not want to write either post because I am not giving up....but I mean it.....either overcome or be taken quickly. This is about him and always has been but now it is also about me.

Thanks Patty, I am thankful that I can inspire as I bare my soul, I want this journey to keep giving back. You will never really know just what a private person I am in life outside of bc even though I have many friends in my world. I do not let many people inside very deep but felt that this journey was ours as well as yours. I am glad that our journey can and always will help others, I know your journeys have done the same for us. Ooooo, leaving before the tears fall.>>Marie

sarah · 08-26-2009, 11:44 PM

I can feel your anguish and hurt for the mighty oak and your anger at this horrible disease. I hope there are some sisters living near enough to you to come and visit you and give you some big hugs. I give you a big cyber one. No one can be brave and strong 24/7. You need other shoulders to lean on and to take a breather. Perhaps go to a spa and be pampered for a day. Go to the beach and yell into the wind. Go to the gym and exercise until you are dead tired.
If you want to write to me privately, you can. My heart is so sad for you. Cry and scream and let go. Tomorrow is another day.
hugs and love
sarah

michka · 08-27-2009, 12:30 AM

Oh Marie! Don't say "forgive me". What you are living is so difficult and exhausting. We all know how much you love Ed so you are entitled to express the way You feel. Please reach out for help around you. Don't stay alone. Try to choose just one of your friends, relatives. I know, it's not easy when you are exhausted and so afraid of what is in front of you. I wish I could do something to help you and not just write on this computer like an idiot with tears in my eyes. Michka

Lori R · 08-27-2009, 04:30 AM

Dear, Dear, Sweet Loving Marie,
Please do not apologize for expressing the realities a caregiver faces in supporting a loved one through an arduous journey. As always you are an inspiration and your honesty in regards to this difficult challenge continues to humble me.

OH Marie, Mighty Oak is so fortunate to have somone that loves him as much as you do. And also someone who has had the strength of character to slug it out day after day.

I wish so much that we could help carry the baggage for this journey, even for a moment to give you some respite. I encourage you to seek out sources of respite locally. Maybe some of the other care givers on the board can offer up some real world coping strategies.

You are an AMAZING person and we are all honored to know you.

Lots of Love.....Lori

Believe51 · 08-27-2009, 05:36 AM

Just me being me. I really want to take care of this all myself but I have called hospice for further guidance and will speak to OncoMan at some point in the next day or so. I told them to call me and let me know if there was any change with the brain that was bad and needed Decadron, I have 2 and 4 mg here already. I also called and left two other messages. This is a sure fire way for me to get calls of this nature......no calls, this is good for the moment. I will know for sure about the results if they are good. If things have improved for even an iota of good news....I am blasting those great results from Ixempra and miracles.

Meanwhile I remain lost and broken. I used to think that I was selfish wanting him to stay around no matter what....and now I feel selfish seeing him like this. I cannot express. So far too weak for meds and too medicated to enjoy more than an hour here and there. Sometimes I subliminally send messages for him to consume more liquids. When he needs to use the bathroom, it is on the other side of the house and he tends to stay up longer....Sssssh, our secret Sisters. Love you all.>>Marie

Hopeful · 08-27-2009, 07:10 AM

Marie,

My heart breaks for you both. You are not a bad person for feeling the way you do, and your feelings are not a betrayal of Ed. No forgiveness necessary.

You are both in my thoughts.

Hopeful

Debbie L. · 08-27-2009, 07:34 AM

Marie, you express yourself so well - the truth of what you're saying goes right to our hearts. What you're feeling seems normal, right, and loving to me.

I've heard it said that one of the "good" things about advanced cancer is that it often does get to the point that we know with absolute certainty that the bad moments are overriding the good and that it's time to die. I don't know if it's all that "good" - because the loss is hard, whether it's from being hit by the bus out of the blue or it comes slowly and by the end is welcomed. It's just hard no matter what. But your feelings of wanting an end to the poor quality of life that you both are enduring are perfectly normal and not something to apologize for.

And you've not only expressed your thoughts to others who understand and support you, but you've called in local help (you're doing good!). I don't have any personal experience with hospice but I do know that I've never heard anyone say that they wished they hadn't had their help. They can help in small practical ways and they help carry the burdens and ease the fears.

Please keep us posted, as you and Ed are in everyone's thoughts and heart, especially now during this hard time.

Love,
Debbie Laxague

Yorkiegirl · 08-27-2009, 07:58 AM

Oh Marie my heart breaks for you. I do understand what you feel. I went thru with my 16 years ago.

I am glad that you called Hsopice, they will certainly be a big help to you and to Ed.

Your not giving up on him, but there does come a time when enough is enough and if it at that point just hold onto him and love him. I know it's hard, but he shouldn't have to live this way and neither should you. Again I say this not giving up, but wanting what is best for him.

Many prayer's going out to you and Ed.

MJo · 08-27-2009, 08:44 AM

I hear exhaustion. I am so glad you called hospice. You need hospice. They help the caregiver. I can only send you a cyber hug, since I'm on the east coast.

chrisy · 08-27-2009, 10:18 AM

Marie,
I think it's unanimous on the "forget about asking forgiveness". Your openness is a gift and of course you are forgiven if that's what you want, but I am overwhelmed with gratitude to you for trusting us with your heart even as it is breaking.

Everyone has spoken here with such wisdom - and I have very little to add. I'm glad you are reaching out to hospice - I also have never heard anyone regret making this move, only wishing they had done it sooner.

You wrote
I cannot take much more of seeing him like this and I really think it is because he does not want to leave me.

Marie, this could be true. You've told us before of your promises to each other to keep fighting, and also of the permission you have given Ed to decide when it is enough. I hear you whispering that this moment may be approaching. Ed may feel that as well, but really, who would EVER want to leave you?

Letting go is not the same as giving up...we know you have love for Ed that can and has moved mountains, that you are so proud of him and how hard he has fought and never given up...and that if he decides it is time to let go it will be ok.

Praying for you constantly...
Chris

Diane H · 08-27-2009, 10:44 AM

Dear Marie, My tongue is tied, the amount of suffering you and Ed are having to endure is daunting and beyond what anyone should have to take. I can only send my prayers out that you both find comfort, release and peace, in whatever way that happens.
I am so sorry,
My love to you~

Diane

Mary Jo · 08-27-2009, 11:19 AM

Dear Sweet Marie....I can add nothing to what the others have said to you.

Marie, we know you....we know you are a loving, kind soul who would do anything for Ed and you have....you've done EVERYTHING!

I'm so sorry you are having to endure this suffering along with Ed. I can only pray that the "end" will be quick and peaceful for you both.

You are with me in Spirit and my prayers ascend for you and Ed.

Love and endearing hugs,

Mary Jo

schoolteacher · 08-27-2009, 12:09 PM

Marie,

I am so sorry that you and the Mighty Oak have to experience this. My heart breaks for you. May God bring the both of you peace.

Amelia

janieR · 08-27-2009, 12:21 PM

Dear Marie,

I simply do not know what to say except my heart is breaking for you and Ed.

Unfortunately I do not know you personally, but from your posts since I joined I wished I did.

All I can say is I am thinking of you both and I so wish peace for you both. It is so unfair.

Love Janie

Karen Wheel · 08-27-2009, 12:33 PM

Marie -
Honestly you and Ed have been such an inspiration for me and I read all your posts and feel I know you. Thank you for feeling safe enough to share this with us here.... it is so good to get it out!

I hear you are so exhausted. Although, I don't know exactly how you feel as I am the one who is Her2, not the caregiver. However, sometimes, even in my short 6 months of this fight, (note mine has been nothing like your fight with Ed), but for my man, I feel has it harder for him, than me.... as he feels so helpless and sometimes doesn't know what to do or say.

Don't feel bad, don't ask for forgiveness... I think that not only is Ed doing all he can, but you are also the twin Oak here in this case.

This disease is so brutal and so senseless and there is no other way to deal with it but head on and you both have done that. Its normal to feel everything you are feeling and it is so great that you can share it here and your sisters (and brothers) can hold you up in love, positive power, energy and prayers.

Crying with you -and I've also said plenty of bad words, &@%^@#(#*!!! so! Now, you are not alone!

xo Karen

tricia keegan · 08-27-2009, 01:18 PM

Marie,

I think it's wonderful that you can be so honest and upfront about your feelings to us although of course my heart goes out to both of you suffering like this.
I think, just like there comes a time when a cancer patient calls a halt and knows they're tired, that applies also to a caregiver and these feelings are normal and honest and best spoken out loud.
Of course you're tired, you must be exhausted and simply down trodden by now! I think all of us with any compassion for what our caregivers go through acknowledge this as a fact.
You've both fought this so bravely together, and you have been a living walking Angel for Ed and many other's here on the board...but what about Marie??? Who's there to pick you up??
I really don't have any wonderful inspiring words of advice Marie, but simply wanted you to know I hear you and sympathize so much with both of you. xxx
Things have a way of not staying the same and working out, maybe not always to our liking but my wish is for you and Ed to find peace wherever that may lie

Hang in there, we're listening ....

StephN · 08-27-2009, 01:45 PM

Dearest Marie -
Thank you for baring your soul here. It is very well known that caregiving is ultimately hardest on the careGIVER. We call on all the strength and resolve we can muster and try to dole it out to last the duration of the need for the caregiving.

Most of the time, this stress results in some sort of breakdown in the caregiver. I can't describe how exhausted I was after more than nine months of seeing my father try to get better after a 7-way heart by-pass. I had my mom here to help as well. I crashed. My hair was falling out by the handfull like I was on chemo again.

Everyone has a heart full of love and mountains of good intentions to support their loved one through thick and thin. However, being human we become worn down. The emotional roller coaster is a killer. Hospice nurses and their staff are skilled at working with the family as they find them. They are there to bring expertise to your situation.

It is another step and can *seem* like giving up, but from personal experience, this step can open up a new way for you to regain some energy and focus where it does you and Ed the most good.

You are amazingly strong, but the suffering will take its toll. Draw what you can from all of us here and keep walking with us.

Lien · 08-27-2009, 02:06 PM

Dear Marie,
You are exhausted and you need help. I'm glad you contacted hospice. Watching someone you love so much suffer the way Ed is suffering now, is perhaps even harder than suffering yourself. And there's been more this year, the death of your MIL for instance. It's more than anyone could bear.

Perhaps you are right, perhaps Ed doesn't want to leave you. Have you talked about how you see your life after he's gone? Would it help him to know that you will be able to cope? Does he hate seeing you this way? Does he feel responsible for what's happening with you? Perhaps you can discuss these things.

I am sending you a great big hug, all the way from the Netherlands, Europe. And did you know that hugs grow, while travelling through the air? They become bigger, and warmer, and much huggier! I've added some waves of relaxation and healing energy for good measure.

We all love you, you know!

Love

Jacqueline