September 29, 2008 at 11:46 am #23113darlaParticipant
I agree with everything that has been said. I too was where you are now less than 1 month ago. One interesting note. My husband Jim did the same thing you mentioned the last time he was at home, falling across the bed sideways too weak to move without help. Everyone is different & this terrible cancer effects them all in different ways. Just be there for your Dad, Make sure he is comfortable & is not in pain. That is all you can do for him now. I spent the last week at the hospital with Jim & he died with his family by his side. One of our sons was holding his hand & looking into his eyes as he passed. He knew how much he was loved & that we were there for him. We all miss him so much, but know that he is in a better place & no longer suffering or in pain. He will be in our hearts forever. My thoughts & prayers are with your & your Dad. Stay strong.
DarlaSeptember 29, 2008 at 2:07 am #23116barbara6193Participant
I have been exactly where you are with my sweet Jacques, my heart aches for you. All I can say is to savor each and every minute and always remember to follow your heart. Hospice help is “good”, but the patient and family are the ones who know best. I was fortunate to spend 9 weeks by Jacques side, as did our grown children and their spouses. We are approaching the 1st year anniversary since Jacques was taken from us and we are all having a difficult time, but we talk about the last 9 weeks with our wonderful Jacques, and we all know that those were some of the toughest times but also some of the best times. We all were making memories right up until the end. The important thing to realize is that the Hospice staff does not actually know what they are dealing with when it come to cholangiocarcinoma patients, and yes they tend to want to put the patient in a “comatose” state. Your family and your Dad will know when the need for more meds is necessary to control the pain, don’t let anyone rob you of precious minutes. Keep your Dad comfortable and allow him to be his own voice and remember to be is voice if he is unable to.
With heartfelt pain from New Hamphire – you are in my thoughts.
BarbaraSeptember 29, 2008 at 12:51 am #23115marionsModerator
Watching the person you love die is never easy. But knowing that your Dad can live those last days in dignity and comfort and that you will be able to care compassionately for your him and within the circle of your family, will be a great solace to you
Many people use these days to take advantage of this time together. They may take turns with the patient, holding hands, talking to him/or her, or sit just quietly. This is a chance for many families and friends to express their love and appreciation for your Dad. You will know how to handle this as you are so carefully watching him and therefore, are able to get the signs as to what feels best to him.
You are doing everything you can Rank and my heart is with you and your entire familySeptember 29, 2008 at 12:18 am #23114jeffgMember
Rank , My prayers are coming your way. My nieghbor, three years ago was the way you described your Dad and it saddens the heart knowing you can’t really do much to help, except love him til the angels come. I pray his pain level stays tolerable, as it can be so bad for some.
JeffSeptember 28, 2008 at 9:09 pm #23112lainyParticipant
So sorry to hear what your family is now going through. How lucky your dad has been to have your for a caretaker and advocate. Its a tough job. I sincerely
hope that as you approach the end of this journey that your father has a peaceful road with all his loving family around him. Prayers are with you!September 28, 2008 at 9:05 pm #23111devoncatParticipant
Are you getting to spend time with your dad? I am very glad he is not in any pain…that is my real fear. How are the rest of your family coping?
KrisSeptember 28, 2008 at 6:23 pm #1593rankMember
I thought I would write what we experience now after treatment has stopped and Dad starts on home hospice care. I know for me I’ve searched this site for things to expect as the disease progresses. My hope is that this will provide at least our experience to someone else going through the final stages.
Dad went on hopice care Thursday 9/25. Hospice nurse, chaplain and social works have all been by. Our first impression of hospice is that they bombard you with all kinds of medications intended to control pain without first learning about the patient and his conditions. After lots of talking, they finally got it. Dad is not in a lot of pain and we do not want to put him in a “comatose” state by giving him pain medications. He has terrible reactions with opiates so anything with opiates is out of the question.
Dad symptoms are; severe weakness, severe fatigue, blood sugar (he’s diabetic) dropped down to a dangerous 50 this morning. Back up to 109 now. We’ve increased his dose of anti-depressant and giving him ativan as needed for anxiety. He just wants to be left alone. He gets really agitated and annoyed when you ask him questions regarding how he’s feeling.
His cancer has mets to lungs, small brain lesion and all over liver. His urine is now the color of “orange” gatorade and his stool is now a light grey in color. He has 3 stents so we wonder if they’ve stopped working. He color is a little jaundice. Today he has not gotten out of bed except once to have a BM. He has eaten a breakfast burrito and small hamburger.
After going to the bathroom he came out and fell back onto the bed and is laying sideways across the bed. He’s too weak to lay properly on the bed. He is currently using oxygen to help with his shortness of breath.
I’ll keep posting as things progress. I hope this helps someone out there wanting to know what could be expected. (Although I know everyone is different).
Thoughts and prayers to all patients, caregivers and their families
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