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10 years 3 months ago #26609 by TR1492
Savvy - I know what you are feeling. Tomorrow is 6 months since my dad died from bladder cancer and all the emotions are rushing back. It is amazing how quickly this disease can change everything. In mid-November, we believed that he was cancer free and he died 6 weeks later.

As my father was going, we had lots of talks and you will be surprised about what your mother deems important. My main concern was the fact that he would not get to see his grandson grow-up (he is only 18 months now), but his thoughts were only of my sister and of me. To make sure we were ok - to make sure he had done his job, to know how proud of us he was, how much he loved us. I asked my father if he would help me - if he would take a very special job - to watch over my son as he grew up and I truly believe he is doing that.

These kind of talks can give both of you peace.

Your life will never be the same - I can guarantee you that - but keep in mind that your mom will always be with you.

T.R.

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10 years 3 months ago #26462 by Stephany
Savvy, I hear you....cancer sucks. And now you have to take some time for yourself and your mother. Time to hold her hand, and tell her how much you love her, and how much you're going to miss her. Tell her how much she means to you, even if it doesn't seem like she's listening. It will matter to both of you.

She may rally a little after her body starts to shake off the effects of the Alimta, and you may have a few weeks of time to spend together. Just because she's coming home to hospice doesn't mean that she's leaving you right now.

Here's a tip: set up a caring bridge website for family and friends, and let them all know about it. Then, you can post all the things you want people to know, they will get the news right away, and can send their wishes. They won't need to bother you with calls, and if there's something you need, (like space and peace), you can ask for it. You'll be surprised at how helpful it will be having a central gathering place for your family's information. Go to www.caringbridge.org, and set up a web page, put in whatever you want to share about your mom, and then send links to family. Whenever anyone asks, refer them to the site, and you can save your energy for yourself and your mom and dad.

Hospice will have some great information for you, once you get through the admission paperwork. Lean on them, and listen to their wisdom. Try to hear what they're saying, instead of what you want to hear. Really listen to your mom. You'll be glad you did.

from one who is eternally grateful for every moment we shared, even the hard moments at the end.

Stephany in Iowa

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10 years 3 months ago #26446 by spysir
for nothing left to loose, everyone gains freedom sooner or later. Sorry to hear the news but try to relax (yes I know how it is) and give love and recieve love. Remember there is no fault in your situation this is just life.
My Grandmother lived three years too long, my good friend JohnnyG just last month decided he would like to check out on a Thursday, that was all he wanted for some reason,on a Thursday and he got his last wish. They both still live in my mind as they always were and I am glad I was with them both as long as they wished.
You are not alone in your feelings.

John

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10 years 3 months ago - 10 years 3 months ago #26445 by jqharmon
Hello all,
it's been a long, lonely week in the hospital. We've spoken to the doctors and they've basically told us we're at the end of the rope. Her blood counts dropped like crazy after a single dose of the Alimta and she had positive blood and urine cultures. it seems we've dodged that bullet for now, but it made it clear she can't tolerate more chemo at the moment, if ever.
So the doctors are telling us we're at the end of the line. We're going on hospice. Home to die.
five weeks ago I was driving home to see my mom through a colon surgery not related at all to her cancer, and was hoping to get to a wedding dress fitting and then back to school the next week. Today I'm going home with her on hospice and posting my wedding dress on ebay. What the hell just happened?

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10 years 3 months ago #26387 by Julie
Savvy I know how aggravating it is to keep having to go to the hospital. My husband kept having pneumonia.
My understanding from hospice is they follow the medicare guidelines which are palliative care only no treatment. This is why we deferred Hospice for a month and a half. My husband wanted to continue to get the Epogen to keep his red blood cell count up. Hospice called that treatment and his hematologist said it was symptom management. I had to get that straighten out before he could start. We used a home health agency to do the blood draws and the Epogen shots. Chemo would be regarded as treatment I suppose unless someone stated it was for pain relief.

It is not selfish to ask your Mother what she wants to tell you. You can ask it would give her something to focus on. If she is uncomfortable with the idea you can defer it. She may want to instruct you and your Dad on the financial situation. About the only thing you can do for your Dad is to be there. This is a heartbreaking event and there is no way around it. This is something he will have to face himself. I can't say that anyone made the loss any easier and they had there own feelings of loss also. The best thing was we did not have any conflict about medical care or the arrangements for donating his body to medical research, or the Memorial Service. I have heard stories from family and friends about quarrels with family members and those have to be minimized.
What we do when we know a loved one is dying is anticipatory grief. You and your family are going through this and it is like being in a crisis. Slow down, keep things simple.

I can't predict how your Dad will do. He may develop the ability to take care of himself. Many people do. I had to learn how to live as a single person. After being a team for 48 years it is not easy but I am doing it.
Julie

Volunteer Coordinator
ABLSC

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10 years 3 months ago #26384 by jqharmon
It turns out that she has a huge pleural effusion on the other lung now and we're waiting for them to drain it. another complication. Every time I think I've got her home to heal a bit and get back on her feet to enjoy what's left of her time, we're back in the hospital. It's so frustrating.
We spoke briefly about hospice. My two sisters were in today. I was able to take time off of school so I've assumed primary caregiver role, while my twin went back to school 3 hours away and my older sister back to work an hour away. They came in today to 'celebrate' father's day for my dad. He's working full time.
We're going to have to talk to hospice, and if they require she not be on the chemo we'll have to consider it. I keep thinking of what she'll want at her funeral, what we'll do for my father, where all their money is and what to do about their house, all these thoughts. She is the main financial planner in the household.
I can't believe I'm facing my mother's death at 24 years old. Do you think it would be selfish to ask her to write down things she wants me to know about raising my own children? I don't have any but I always thought that we'd experience that together and she'd help me through that.
Do the spouses out there who have lost someone have ANY advice on what loved ones did that made it easier? My dad is very quiet, reserved person who believes in God and doesn't question Him, but is still so heartbroken. He always relied very heavily on my mom for everything from financial guidance to picking out his shirts and ties for work. What do I do for him?

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