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14 years 9 months ago #26381 by savvy66394
Replied by savvy66394 on topic new here
Thank you all for your replies.\\,
your words are so kind. We are on the way to the hospital as she has another pleural effusion on the other lung now. My father is crying non-stop. I think he's slowly coming to terms with things. will keep you updated.

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14 years 9 months ago #26379 by spysir
Replied by spysir on topic new here
Savvy,

I just sent you a PM with contact info should you desire, I live in TN and have had some dealings with Hospice throughout the years please feel free to call or email day or night. Caregivers need support too. I too am sorry to hear about your Mother.

The Hospitals here sometimes (but not always) ask if I have a "living will" heck NO - I have an advanced directive, 10+ pages of legaliese and nothing else will do. I grew up in a family which openly acknowledged death is a part of life (The meaning of Life is the time spent between birth and death) and have been the person who sat with several friends untill their end and while is doesnt feel a natural, happy, or even nesisarily good thing at the time I am happy that I (someone) was there for them doing what could be done for their quality of life.

Also someone noted this post "may" be in the wrong spot to recieve maximum
responces/help and it may get moved however for the record I personally have no problem with where it is posted as long as you find some amount of support.

John Blount

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14 years 9 months ago #26373 by Julie
Replied by Julie on topic new here
Savvy, I just read your posts. I can appreciate the anguish your family is feeling. My husband had metastatic bladder cancer. From the time we found out that the cancer had gone into his ureters and renal pelvis on both sides until he died was about 20 months. I was going to write about all the setbacks but you don't need to ready anymore tales of how everyone does the right thing and still the Cancer prevails.

It takes time for this type of news to sink in. There is no right or wrong way to live with cancer. When my husband first was diagnosed with Bladder Cancer we decided to borrow a phrase from the AIDS patients. We are living with cancer. Don't focus on OMG I'm dying.
Help your Mother figure out how she want to live from now on. What trade off does she want between alertness and the effects of narcotics for pain. Pain management is a big issue. Plus the constipation that morphine causes is intolerable for some so it may take some time to get the right pain medications and what to do to stay ahead of the constipation.
I don't know that Dick ever got ready to die. Mostly he used distraction such as playing games on his DS Lite or iPhone.

Feeding was a big issue for me. I would get frantic when Dick wouldn't eat or take his medications. I learned that the cancer can cause some issues with nausea. I had to learn to not get so wound up as it just made everything harder.

Take a deep breath, take several, and slow down. You don't have to make all the decisions at once.
You don't mention how many people in your immediate family. is your Dad around, do you have siblings? Is everything being asked of you because you are in med school. In this instance you are a daughter in need of support not a med student. You can also ask for a social worker from the cancer center and they can help you sort out a lot of these issues. I did a lot of talking with the social worker at the hospital in preparation for the interview with hospice. I needed to be clear about what they could and would do. I had always thought we would use Hospice early in the process and it turned out he was with hospice for a month and a half. They helped provide services to us in the home. They also had a respite facility for brief breaks and and a hospice facility for people who were not able to have care at home. So there is a range of services. They had a volunteer who came and sat with my husband several times while i got away for an hour or two. We got a lot of support from the nurse and a health aide who came in and gave him a bath.
It is wearing to try and do it all. Don't expect it of yourself.
Please keep posting, asking question, and let us know what is going on. You may also want to join the chat on Sunday evening at 8 p.m. Eastern Daylight time. It lasts about an hour and people will listen. Julie

Volunteer Coordinator
ABLSC

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14 years 9 months ago #26372 by Stephany
Replied by Stephany on topic new here
And that's one thing that hospice can help with....the planning, the discussion. The quiet peace that can come with being able to talk about it openly.

Either way, think of it as a gift that you can give your mother.....the ability to talk openly about her wishes, and her feelings. A gift that your whole family can share.

And you don't have to do it alone. They will help.

And we can help, here at the site. Keep on writing, and asking questions, and listening to what the writers have to say. My husband was only 61 when he died. Julie's husband was not much older. And they were on their retirement journey.

We can't take away the pain, but we can listen. Let us help with that. And try to sleep. Remember, asking for help is a good step.

All of the time I was trying to write this, I was chatting on the private chat room with another cancer widow. That kind of experience is so valuable, and you'll find lots of experience here. Not for dying, but for living well.

Stephany in Iowa

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14 years 9 months ago #26371 by savvy66394
Replied by savvy66394 on topic new here
I just don't know how to do it. How do you get ready for her to die??? i can't do it. I can't admit that she's not going to see me become a doctor, won't see her grandchildren, and probably won't see me get married.
I think she's praying and believing the Alimta will work still. But even if it does I don't know how long it will buy us.
She's only 64 years old. How do you come to terms with the fact that she's dying? How is that possible? And how do I sit my family down to get them to realize this? no one wants to face that. We all just desperately want one day away from cancer, not to get into that conversation. I can't do it.

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14 years 9 months ago #26370 by Patricia
Replied by Patricia on topic new here
Sawy..Vanderbilt is an excellent bladder cancer facility and i know the
alimta is a last ditch try. But if she is refusing liquids and foods and the hearing of voices probably means the kidneys are not doing their job either at this point. She's probably going to have to be admitted to hydrate her. I would definately let the doctor know what is going on at this time.
I'm not sure how all Hospice works. I know here in Ohio it strictly palliative care.
Pat

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