I got into it today with a woman on one of my groups. The discussion was about whether it's better to be realistic about what's going on with a brain tumor patient, or to just go on and pretend that everything is fine. The talk moved to the subject of hope, and I posted this:
"I don't think that your realism is a "character flaw" at all. You are trying to hold onto what's true, what's real. To hold onto false hope is not doing him any favors.
"And I think that being prepared emotionally does help after he passes. The death brings lots of changes and lots of things to do. Having to feel the shock of 'oh no, you mean the chemo didn't WORK?' is something that you just don't need.
"Plus, being prepared is more than just an emotional thing. People who refuse to see the inevitability may postpone bringing in Hospice or outside household help. I wish that we had had more time with Hospice. As it was, we got just 4 weeks, which wasn't even enough time to get to know anyone. Hospice means free drugs, free wheelchair, free hospital bed, counseling, help.
"If the family thinks that everything's fine, then they may postpone coming to visit, thinking that there is an indefinite period when they can visit. If you keep thinking that there will be a miracle, then you're left with having to explain to family why he 'suddenly' died, why 'no one told us he was that sick.'
"Of course no one who has 'faith' is going to hear my saying, 'but it isn't real.' They are going to go on believing what they believe, and that's fine. It still doesn't make it real, but it's fine. I've decided to just stay out of those MRI threads."
Another woman posted back. Here is part of what she posted:
"As usual not everyone is going to agree on certain subjects. I chose to have 'faith' and believe in God.
...
"If you just give up, how does this make the person you say you 'love' feel? They need hope until the end!!!!"
And here's my response to her:
"[quote]If you just give up, how does this make the person you say you "love" feel?[/quote]
"Don't even be suggesting that I didn't love my husband or show my love for my husband! I have my own beliefs, which Michael and I shared. And my beliefs don't make me any less loving than you are, with your beliefs.
"I guess it's a question of how you define hope.
"Of course we had hope. We had hope that today would be a good day. We had hope that we would laugh, have good food, and enjoy each other. We had hope that we would be able to see our family and friends, and that he would feel good. We had hope that Michael's quality of life would remain, that he could continue to do the things that he loved to do.
"When he became unable to do those things, I did whatever I could to keep him comfortable. We talked about the here and the now. And we talked about our past. I brought out our photo albums from the 25 years we were married. We laughed, we cried, and we hugged.
"Give up? I'm not sure what you mean by that, but anyone who knows me knows that I did not give up treating my dear husband with love and dignity. We stopped going to doctors for treatment, when we all determined that the chance of its helping was remote and the chance of its causing him discomfort was definite.
"I believe that every family makes this decision when it is right for them. No one's going to live forever. There comes a time when chasing cures will just cause more angst and misery. We found joy -- real joy -- in giving thanks for the good life that we had.
"Yes.. you're entitled to your opinion, but if your opinion is that I'm less loving than you are, I take issue."
Thursday, December 27, 2007
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Oh, Janee, I know steam was coming from your ears as you dealt with that woman. Maybe she didn't mean to insinuate what she did, because I'd guess she is under tremendous pressure from all this, too. BUT having observed you and Michael together after his illness set in, I've never seen two people whose love for one another was more apparent. You were both realistic about the situation.
ReplyDeleteAs a physician, Michael probably witnessed people who put themselves through Lord-knows-what medical torment without regard for quality of being.
Maybe it's time for you to bow out of your support group. You don't need that aggravation. You and Michael did a splendid job of preparing for his passing with grace and dignity. If that isn't the ultimate form of true love, I'm not sure what is.
Love,
Lynell
Hi Janee,
ReplyDeleteI never knew you or Michael personally, however I have read your blogs right from the start. I recall telling my husband about you one evening and how much you inspire me. I told him how I could feel the depth of your and Michael's devotion to one another throughout his illness. Even though you never wrote the words, I got the impression that in some way Michael helped you prepare for your life without him. I was extremely touched by that thought.
When Michael passed away, I felt that I had known him too. I know you miss him terribly. At times I can sense it in your writings but most of all, I find your writing upbeat and inspiring under the circumstances.
My husband and I have been together for 34 years and thankfully both of us are still healthy. I cannot imagine life without him but if either of us were to become terminally ill, I would want to be prepared and deal with the reality and live every last day together just as I have perceived that you and Michael have.
I watched my father suffer through endless bouts of various treatments, none of them really helped ;they seemed to make him even more ill. His last weeks were spent in a coma. My mother still believed that he would wake up and be fine with the result that it became too late for hospice and his last few days alive were torturous for those of us watching him cling on to life. I remember being very angry when he died. I was angry for 3 years afterwards.I was angry at my Mother for not facing reality even right at the end and I was angry at my father for leaving me without saying gooodbye.
Thank you for being an inspiration in so many ways, Janee. As for the forum, well I am sure you inspire many others on there too.
Dianne
Hi Sister Mine,
ReplyDeleteI just got home from having my fourth chemotherapy infusion. You know how sick I get, as you have witnessed it. Hope, yes I have hope, I hope that this time the chemo will work. I hope that the side effects won't be as bad, I pray and thank God for every good day I have, but at some time, I am going to choose quality of life over quantity. I know that scares our last living brother, but it is a personal choice.
You know how I loved Jim, but when he was diagnosed with pancreatic cancer, we chose to hope that the three surgeries would work, we said our prayers, but in the end, we had to call in Hospice and end the useless surgeries.
I know how you and Michael loved eachother, I agree with one of the postings that Michael tried to help you get through the year with the strength to deal with what was to come. I know what a loving, great job you did in taking care of him with dignity. The whole family saw it through the last month of Michaels life, and we love you for what you did.
Hope, prayer, belief, angels, and faith in God to heal, all this is good and well for as long as it is possible, but realism is important too. At some time it becomes evident that none of the above is going to work, and one must face the fact with as much bravery as possible. Continue to pray, it doesn't hurt, but do what must be done for the future. Do it with love and to give your loved one dignity in the last weeks. It becomes evident at some point that there is nothing left medically to be done. The doctors will give you that information. Then, do what you can to make your loved one's live and yours easier in a really difficult time.
I was angry when Jim died. Was I angry that he left me? NO! He didn't choose to get cancer and die. Was I angry? YES! I was angry with God, because I couldn't see that he would take such a good man and leave some really EVIL people healthy to murder, rape, steal, etc.
I agree that you ought to give up that brain cancer forum. Those people don't want your advice, even thought you write so well and have so much to say. They just need someone to vent their own anger and frustration on, and you don't need that. You are moving on, and are facing your own mourning. I belive that you are doing it well, and will come through this with your own dignity and happiness.
Well, I've got to get something to eat.
Love you, and be well.
Me
The world is full of people who can only see themselves and the way they do things as correct, especially if they are dealing with a loved one with cancer. This woman clearly is one of them. Don't let her stamp you.
ReplyDeleteI thought about you and Michael very, very often and was always amazed at how you two were dealing with the situation. I had hope that he would live a happy life for a long while after his diagnosis.....Although it wasn't as long as I had hoped for...I am very sure he was happy and loved.
Aloha and hugs,
Heidi Lisa
I know you took great care of Michael, and no one could or would ever disagree with that....
ReplyDeleteMaybe you left something out, but I am just not seeing how what the other woman said applied to you at all.
I certainly never felt that you gave up on Michael...and I'm pretty sure Michael would never say that you at anytime gave him up.
I sure am sorry you had such a hard time with the other woman's opinion, but from what you wrote it does not quite sound like she was criticizing you, even though I'm sure that is how it felt.
It does sound as if the other woman is having a harder time accepting things than you are.
You are a very strong and resilient woman, and your love of Michael is without end.