~As Caregivers~When Do We Stop Pushing??

[Believe51]

I would appreciate thoughts on this subject from anyone; from a caregivers point of view OR from a patients point of view....

When do we stop pushing? I always feel like I am demanding so much. I firmly believe that I will know when to be less demanding but will I? Our deal is "I will push you forward until Ed says "STOP". I made him promise not to say stop until he really meant it. When I get that word I know I will.

Until then I know it is not that time. I have feelings of guilt for pushing him so hard.

Eat this, get ready for the doctors, we need this test, take this medicine, try to get some rest, but it is good for you....the requests go on!

Opinions??>>Believe51

[Mary Anne in TX]

Oh, Marie, what you do is so hard. Where is that fine line? Who knows? We're all so different. Gary tried to get me to stop and that just made me work harder to get through the stuff! But if it was him, I know I'd be doing what you are doing. I don't know what is enough and what is too much.
When we love someone, doing everything we can to extend their life doesn't even seem like enough.
I'll just send you bundles of love and tremendous belief in your love's ability to know when!
You are simply the best! Luv U, ma

[Believe51]

Sometimes I feel so selfish!>>Believe51

[BonnieR]

Oh, Marie, it is not selfish to love someone so much.

[schoolteacher]

Marie,

You love Ed, and he is very lucky to have you.

Amelia

[chrisy]

Marie, this is such a hard question, and no you are not selfish. Both you and Ed are greedy for life and for the time you have together. Who wouldn't want more, and when do you stop wanting more is a tough question.

I love the way you and Ed have discussed this, and that you are so strong for him. I don't know how I would feel about that question when the time comes, but right now my opinion is that you keep pushing until Ed says stop.

With that, one caveat is that Ed must know that he has your permission to do so (even if it's only when he's sure). It seems your love for each other and your openness about the fight you are in has put you in that space already.

love you
chris

[tricia keegan]

Marie, I would'nt worry and would leave this to Ed, it has to be his decision as I'm sure you'll agree.
As a cancer survivor, I would only want my family to stop when Ii actually say so very clearly
I get the impression Ed will be sure to let you know when enough is enough!

[eric]

Marie,
When I worry if I'm "being there" for Caryn I find the best thing is to ask her. My feeling is that it's a win, win. By asking you'll:
- reinforce to him how much you want to be there for him which should make him feel good
- you'll find out what you're doing well and what you can do better, which can only help
and
- you'll stress less because you'll be more clear.
Hope this helps a bit.
Eric

[Bill]

Hi Marie! Nobody in their right mind would ever think of you as being selfish. You are the exact opposite. You are self-less. You only want the best for Ed. You are doing all that you can to help him, and he knows it. I'm sure that if he ever feels that you become "over-bearing", he'll let you know. Until then, trust your innate care-giving instincts. You're an awesome person and doing your best in a situation that would crumble many. You are strong, Marie, and you are giving your strength to Ed. You hang in there girl. We love you and we're here whenever you need us. Love, Bill

[WomanofSteel]

Marie, you are not selfish. I can't blame you for wanting to have more time with the man you love. I am sure he wants more time with you too. I had a uncle who had pancreatic cancer. He was my fav uncle and when it came time for him, I knew. I was laying there with him in bed and I told him not to worry about us to do what he needed to, to let go. It was hard, but I knew at the time it was the right thing to do. I am sure he is waiting patiently for when I am ready, but I am not giving up without a fight and you shouldn't either.

[Debbie L.]

Marie, I send love and good thoughts and of course I'm wishing that you weren't in a position to ask this question. And as everyone else has said so well - you are not being selfish - you are a wonderful and loving caregiver and Ed is a lucky man.

That said, I agree with Eric. Ask Ed. I don't think this is a one-time question. It's good to keep communication open. It's a reasonable part of a discussion about treatment changes, or a separate discussion when the moment seems right. Maybe Ed has something he'd like to say on this hard topic, or maybe not. But if he does, he may be holding back because he's afraid he'll upset you. And if he does have something to say, of course you want to know that. So ask. Avoiding hard topics doesn't make the hard topic go away, alas. Gentle discussion doesn't make them go away either, but it does bring closeness and clarity to those in the discussion.

In a way, in asking this question and telling Ed your fears (being selfish, grief, etc), you are giving him a gift. A gift of being able to offer support to YOU, who certainly needs and deserves support just as much as he does.

I'm not saying this conversation will be easy. But it will be healing.

Now I'm going to talk about hospice - but I'm not implying that it's time for you and Ed to call hospice - I'm just pointing out one of their strengths. I actually wish that they could talk to all of us, at the very beginning of a cancer diagnosis - not because we're all going to die (although of course, we ALL are dying), but because we all are going to have fears about death and to get them out in the open and realize that talking about them makes things better, not worse - that's something everyone can benefit from.

To me, comfort with the whole topic of death and dying is one of the strengths of hospice. I've talked to so many people who said that hospice helped them with physical care and making their loved one comfortable and that was good - but what was MOST important about hospice was that they had a way of opening up the topic of dying to casual conversation. They acknowledged that elephant in the room (that one, there, under the sofa table). And they did it in such a comforting and matter-of-fact way that all involved felt able to talk about things that had been foremost in their minds, but hidden from each other, before hospice entered the picture.

Ask Ed.

Love,
Debbie Laxague

[Vi Schorpp]

My husband will be gone 3 years in April. He reached a point where he said enough is enough. Up to that point he had more procedures and tests that I care to remember. He died of brain cancer. He wanted to continue fighting, but was just "tired." Quality of life was not good, and he said he didn't have the energy any more. He knew he wouldn't "disappoint" me because we talked about him making a decision when he was ready. We made one final appointment with his pc physician, and this doctor knew it would be the last time he saw him based upon his vitals and such, and just proceeded to tell him what a wonderful man he was, what strength he fought with, etc. He hugged my husband and it was very touching. This doctor was the "general" amongst all the various doctors my husband had been seeing. What an absolute gift this man was. As we left, he recommended, as Debbie mentioned, that we get in touch with hospice.

I was familiar with hospice and we had a meeting on March 29th, the day before my husband's birthday. We didn't know how long my husband had, but he wanted to be AT HOME. Hospice was awesome, helpful, and a gift to me and my family. They did as much, or as little, as needed. My husband didn't survive very long, and he died on April 9th.

Believe it or not, there are lighthearted moments even as death nears. It can't be all solemn and heartbreak. For instance, my husband was married once before, but had no children. I invited his ex-wife who lives in our village to come over and visit Cliff as he had entered hospice care. She was grateful and visited a few times with our blessings. Nothing is all good or all bad -- they shared a history and needed to say goodbye. After one visit I came in the room and my sister said "Cliff, who's holding your hand?" My husband looked at me and said, "my wife." I said "which one?" and he laughed and squeezed my hand.

Thanks to hospice and my family, my husband died knowing that he was very much loved and was going to be very much missed. If my mother-in-law was living she couldn't have taken better care of him than the care he received from all of us, and from hospice. What more can any of us ask for?

[Believe51]

I so appreciate these posts concerning this topic. Although we are open about all aspects of this journey and talk constantly about it, somehow these feelings are tough to shake. I do know one thing, he is tired but will fight for every second he can obtain.

Having a reoccurence certainly brings these feelings to the surface once more. It is like we live in two worlds, the 'reality' world and the world that 'believes'. I share time between these worlds and would never want it to be different. We also try to deal with what is right in front of us, 'the what is'. The 'what if' days are gone for now and hopefully forever, I try to replace those thoughts with 'what could be'. Some day Ed 'could be' NED. It supplies me with the hope to go on another day. And if he never dances with NED, well, I have not wasted time thinking about 'what if'.

So Sweeties, 'what is' happens to be a reoccurence that we will fight with another chemo regime. He is tired but looking forward to chemo to allow him to petition for more time. During this most stressful time I must remember that I need to face the reality that things may happen. It is a hard reality but reality just the same.

Thankfully we have our burial plot planned and the Sourwood tree we planted behind our stone. Our goal is to watch this tree grow together as long as possible. How is that for a pact? Glad that topic is over because I cannot even explain how difficult that was. Within getting diagnosed it took 2 months to settle that situation. Ed will die at home surrounded by his loving family and our cat, Mookie. He is also getting buried with our first cats remains. We are being buried a few spots away from James' Woods brother and other close friends and family. When they go to visit them they can slide down a few to visit us too....aww, how cute!!

For now he will trudge forward with the same zest as he has always had. A little beat up, very tired, and in dire need for chemo to start again. Chemo for Ed is like childbirth to me, you forget the pain and issues until you are doing it again.....but you would do it again in a heartbeat. Well, atleast for now.>>Believe51

PS: I do not have the fortitude to pick up any brochures or written information for Hospice. Even in the beginning when I knew I might need them then. I will, but now not. Thank you all from the bottom of my heart, it has helped me to be able to cope much better.

[Jean]

Marie,
Maybe you have read the story of "The Gift of the Maji"
When I read your post I thought of that story.
The plot of the story is about a couple who are very much in love with each other, but are facing hard times, the wife wants to buy her husband a gold chain for his pocket watch that was given to him by his father.
In order to do this she has her long hair cut and sold to make a wig. At the same time the husband sells his watch to buy his wife a beautiful set of tortoise shell combs for her long beautiful hair. Each is disappointed to find the gift they chose rendered useless, but they are pleased with the gift they received, becasue it represents their love for one another.

You and Ed represent to me this story in that your gift of love for each other is wise. The Magi were wise men who brought gifts to the baby in the manger. You and Ed are also wise and both of you through your love will make wise choices at the correct time.

Fondly,
Jean

[Sherryg683]

Marie, I have thought about this so often, from the other perspective though. If it got to the point where it was obvious that nothing was working and I only had limited time, I would want my family to tell me that they love me, are going to miss me but will be OK. I don't want my kids and husband to suffer. I read somewhere that "dying is easy, it's the living that's hell". I know the hardest part of where I am is knowing what it will do to my children. That being said, I am also resolved to fight this with every breath I have. If at some point it gets to much, I will tell them and hope they do the above. As far as your question..ask Ed how he is feeling. If he still has fight in him, then you keep being the wonderful woman that you are. Having someone like you there to help fight for him gives him more will and strength to fight, you keep him going. If that day comes where there's no longer any fight left, I would say, just be there for him, tell him you love him, will miss him with all your heart but will be OK and that you will be together again someday...sherryg