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Posted 5/20/2013 2:14 PM (GMT 0)
shakehead My Dad is in the final phase. He has been taking Zytiga for the last three months.

It is not working. He has had prostate cancer for 18 years.

At first they removed the prostate and he went through radiation. He did the Casodex and lupron and now he is taking Zytiga,xgeva and lupron.

The Zytiga has prolonged the agony basically and thats about it.

In November 2011 he had an artificial sphincter put in to control incontinence. It did not work.

We all feel that was the beginning of the end for him. Since then he had many, many problems. Up until that point he was doing well. He was just tired of having the incontinence problem.

He had that removed in December of 2012 and since then has basically been sitting in his recliner. Now he is mostly sleeping and when he is awake he has times he is coherent and times he makes no sense at all. I have searched the internet to find someone who has gone through this stage of cancer and it is hard to find.

I just want to know if anyone is there now. Or does anyone know of a forum where I can go to talk about this stage? I am sure this place probably isn't the right one. Good luck to anyone who is suffering with this cancer. It is a real terrible ordeal to say the least.

Posted 5/20/2013 2:26 PM (GMT 0)
My heart hurts for you and all that have to endure this. May peace be with you all.
Posted 5/20/2013 2:32 PM (GMT 0)
I went through this with my dad, who passed away from prostate cancer. My recommendation is to seek assistance from a hospice program. If you don't know of one, your local hospital can make a referral. Hospice focuses on paliative care -- that is, not curing disease, but making the patient more comfortable. They have great expertise, and it is a shame that many times they are called in too late. My dad was very grateful for hospice, and that we "gave him permission" to stop fighting. It was the last (and hardest) gift we gave him. Best wishes, Medved
Posted 5/20/2013 2:42 PM (GMT 0)
First I glad you found us. Second - sorry you need to be here.
I watched my mother died from pancreatic cancer and know how hard it is to watch someone slip away.

What you're describing is typical end stage. Sorry to be so blunt. As the body shuts down the mind begins to drift away from life. His your dad taking pain meds? This can also cause some of what your describing.

You should connect with a hospice program. Your hospital or doctor should be able to recommend one. Most people think of hospice for the cancer patient but they also help support the patient's family. I found the support from my mother's hospice to be invaluable during her last few months.

It's not the kind of thing you'd find on-line very easily. You won't find many people talking about this in their blogs as it is a very painful process to watch.

If you want, you can send me a private email (click on the email link on this entry).

My thoughts and prayers are with you and your father during this difficult time.
Peace to you and yours,
Andrew
Posted 5/20/2013 3:13 PM (GMT 0)
My heart goes out to you as I was in the same position with my Dad.

Talk to his Doctors about the various pain medications and have them on hand when/if needed.

Consider bringing in hospice.

I'm sorry for what he's gone through and for you as well.

Take care of yourself.

Posted 5/20/2013 3:20 PM (GMT 0)
I just wanted to simply say that it grieves me to hear your father's story. . . I too will weigh in on bringing in hospice.

Thoughts and prayers for all of your family.

Peace. . . .
Posted 5/20/2013 4:00 PM (GMT 0)
Thanks for all the replies. I have asked him if he would accept Hospice care but he has said No, he wants to get better. He even told the Oncologist this last week. He wants to continue with the Chemo drugs and not give up. It makes it almost impossible to watch him go through all this. We all know he is dying but he is not going to give up at all. He won't even allow a home health care nurse to come in. He wants and expects my brother and I and his girlfriend to take care of him. That means he requires a Hoyer Lift to lift him out of his chair/bed/commode etc. He can no longer walk. We know that there will be a time when he is unable to tell us what he wants and at that point we can do something but for now we have to sufferer watching him suffer. And yes he is taking Norco pain pills every four hours.
Posted 5/20/2013 4:11 PM (GMT 0)
Please know my thoughts are with you and I am so sorry your family, especially your father is facing such a horrible situation.
Medveds comments reminded me of my mom. She suffered brain and lung cancer. She lapsed into a coma but kept lingering for days. During one visit I whispered in her ear how much I loved her and that it was okay to let go. I cannot even describe the look on her face as I told her goodbye. For someone who was supposed to be in a coma it was obvious she heard every word because she was crying. She did "let go" a day later.
Posted 5/20/2013 4:14 PM (GMT 0)
so sorry.

hospice care made the departure of my grandfather easier in that they were able to control his pain and gently guide him through. He didn't die of PCa although he had it.
Posted 5/20/2013 4:16 PM (GMT 0)
How old is your Dad? What was his last PSA number?
Posted 5/20/2013 4:30 PM (GMT 0)
You might want to call the Hospice director and discuss the situation with him/her. They have probably dealt with similar situations. Maybe they could offer someone to come in "to help control the pain" -- without your dad having to abandon his goal of a cure. Tough spot.
Posted 5/20/2013 4:55 PM (GMT 0)
My Dad will be 84 next Tuesday. His last PSA was 254
Posted 5/20/2013 5:55 PM (GMT 0)
Being a caregiver for a person in your dad's situation isn't easy. At some point you have to take care of yourself and get some support for you. The hospice people and/or your doctor should be able to provide resources for you - even if you dad refuses their care.

Hang in there. We're here all the time.
Andrew
Posted 5/20/2013 6:06 PM (GMT 0)
CIN2013,
Your mentioning the Hoyer lift brought back painful memories of my father and mother's dying -- my heart goes out to you. I guess he will know when he is ready. I think medved is giving good advice about talking to a hospice director -- he/she may have some insights in how best to handle the situation. I remember especially the helpful services of a family therapist and social workers at Cornell Hospital and a rabbi at Calvary Hospital.

In the meanwhile, I hope you are taking care of yourself. The impact on us as caregivers can be horrendous. I remember my world shrinking as I cared for my parents, and the stress of waking up to each morning's fresh hell.

- Allen
Posted 5/20/2013 11:41 PM (GMT 0)
CIN2013, My dad died of prostate cancer at the age of 89.During the last few weeks he was wearing diapers all the time. He was taking a lot of pain killers and mostly sleeping. His body shot down and would not eat. It was painful to watch him go. I'll pray for him and your family.
Posted 5/21/2013 12:14 AM (GMT 0)
Thanks everyone. I really appreciate all your comments.
Posted 5/21/2013 12:19 AM (GMT 0)
Ed C.'s description is very accurate...Your organs shut down..You stop eating and drinking. You can prolong the agony with IV fluids but Hospice will discourage that..A catheter makes things much easier for care-givers....It's a very difficult thing to watch, to be a part of..NOW is the time for those long talks with your Dad....
Posted 5/21/2013 12:21 AM (GMT 0)
Cin --- will be thinking of you...if we can be of any help, please don't hesitate to ask...
Posted 5/21/2013 1:32 AM (GMT 0)
Cin2013,
I'm sorry you are in a situation where your loved one is not ready to let go when his body is telling him its' time. My husband enter in home hospice 3 weeks ago, and I can not tell you what a difference it had made for both of us.
You really need to have the conversation with him that you a not able to care for him at home alone, not that you don't wish you could, but you just can't . Bring in hospice and let them speak to him, maybe that will change his mine. They can explain that he can leave hospice should he get better, and re enter when it's necessary again.
I pray he listens, it's hard enough on the caregivers but even harder when the patient is in denial. Prayers surround you and your family. Hospice has been a blessing and my husband feels better now than he has in 2 years through all the treatments
Posted 5/21/2013 6:14 AM (GMT 0)
Cin,

A good friend of mine had to insist that his family let him go to hospice with terminal cancer. He recognised the load he was on them. The last time I saw him, they all told me he was in coma, a half dozen talking about him in various tones as I came in, but he whispered that I should tell them to leave him to die in peace.

Hospice isn't something you can decide unless things are at the end, but maybe he could be helped to understand that he would have better continuous care, while the family deals with the life that he lived his life to give them. 

Posted 5/21/2013 10:22 AM (GMT 0)
So sorry for your dad and you. Hospice assistance is a strong option. You need advice on palliative measures.
Truth be told we are all whistling past the graveyard with the presence of this disease on any level. We hate it and we fear it but we learn from it. One day soon this villain will tip it's hand and we will crush it. Until that day we offer each other sympathy, information and support. Collectively we are a strong patient.

Jim
Posted 5/21/2013 11:12 AM (GMT 0)
After caring for my mother-in-law for many years, I am working on a book for family care givers.  In it I'm putting websites that can help with some of the issues you mention (and others that you are dealing with or will be in the near future).  You might find some of them helpful.  These discussions and decisions can be emotionally very difficult.  Feel free to contact me if I can be of assistance.  You and your family will be in my prayers.  cares&source=web&cd=1&sqi=2&ved=0CB4QFjAA&url=http%3A%2F %2F www.nfcacares.org%2F &ei=OM09T67oAsWhtwfv9YW2BQ&usg=AFQjCNHz4DtNbmvQKmQMtt4308YyaOrXhg"> Websites Dedicated to Caregivers http://www.nfcacares.org http://www.caregiver.org/caregiver/jsp/home.jsp http://www.caregiving.com   Medicare explained for caregivers http://www.medicare.gov/caregivers/   Advance Directives, DNRs, Living Wills, MOST / POLST / POST http://www.goodmedicinesf.com/ http://www.agingwithdignity.org/five-wishes.php http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/advance-directives-and-do-not-resuscitate-orders.html http://www.caringinfo.org/i4a/pages/index.cfm?pageid=32899 http://www.putitinwriting.org/putitinwriting_app/index.jspp http://liv-will1.uslivingwillregistry.com/individuals.html http://www.nolo.com/legal-encyclopedia/do-not-resuscitate-orders.html http://en.wikipedia.org/wiki/Physician_Orders_for_Life-Sustaining_Treatment http://www.rocketlawyer.com/article/most-post-molst-and-polst-documents.rl   Hospice http://www.hospicefoundation.org/   Organ Donation, Whole Body Donation to Science, Funeral Planning http://www.agingwithdignity.org/five-wishes.php http://organdonor.gov/index.html http://www.med.ufl.edu/anatbd/usprograms.html http://www.anatomicgift.com/ http://www.funeralplan.com/funeralplan/alternative/donate.html http://ag.ca.gov/consumers/pdf/CELW.pdf
Posted 5/21/2013 12:35 PM (GMT 0)
CIN2013,
You may find some help with the forum below whose members are all battling hormone refractive disease. HRPCA (hormone refractive prostate cancer) members are at all stages so perhaps there may be a little more specialized information there. I am sorry that your father's battle is so tough but he must be a tenacious son of a gun.
My best wishes,
Bill

www.hrpca.org/booklettoc.htm
Posted 5/21/2013 2:19 PM (GMT 0)
call hospice. even if your dad won't allow hospice to help him they can help you and your family.

 so sorry about your situation.

Posted 5/21/2013 4:48 PM (GMT 0)
I'd recommend, as others have, that you use Hospice.  My brother died from cancer, and Hospice was so helpful at the end.  You are in my thoughts and prayers.
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