Dana Intro
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Hi Catherine,
You’re right. The message from your Dad’s ONC about driving was awesome. Glad that he has radiation and chemo behind him. Hope his treatment gives him relief.
My father’s dr said they would talk about driving when his blood pressure was more consistent and he regained some strength. We go back again this Wednesday, and once again, my father is threatening to change doctors because he wants to drive. Although he has multiple people who will take him anywhere, he simply wants to know that he can drive if he so chooses.
Thank you for sharing. It’s a comfort to get input from others in the same situation.
Hi,
I thought Lainy had another day of vacation so just sent you an email. Dad finished his brain radiation and chemo 4 weeks ago and his question to the doctor was when will he be allowed to drive. It obviously is very important to them and a part of who they are. I probably would have just told Dad that his driving days were over, but his ONC handled it so beautifully and said it would be at least 8 weeks until he got his strength back enough to start getting back into normal routines (never gave a yes or no to driving). Dad was a police officer in New York City, so he can be challenging at time too.love and hugs-
Catherine
Thanks to each of you for taking time to respond. We do have Hospice coming weekly, and my father is getting better at accepting a few things they offer. It’s not nearly enough, but every baby step helps.
His paracentesis was Thursday, and 7.5 liters of fluid were removed. He still have more than that remaining in his extremities. I noticed that much of the excess fluid has moved to his stomach to replace what was removed.
Today, I purchased a power lift recliner as an early Father’s Day present. I wasn’t sure if he would accept it, but he did. After playing with the controls, he seemed to really like it. It is so helpful to feel like he has a comfortable chair from which he can rise. It’s especially important that he not strain to stand because he has little control of his bowels now.
His confusion continues to come and go within the same conversation. After removing the fluid, his pain has decreased for the last few days. Removing the fluid is one of the best things we’ve done. I’m hoping to talk him into pain meds when the pain returns, but I don’t know if I can. His girlfriend is against pain medication — I’m not sure why. So it’s a struggle to get him to take anything.
We go back to his doctor this week. He insists that he will change doctors if he isn’t allowed to drive (says the man who can’t rise by himself). His doctor has stood firm. Hospice and I have stood firm on the not driving edict. He wouldn’t allow me to attend his last appointment because he thought I may be the reason that he can’t drive. He’s simply too weak and confused to drive, but he doesn’t recognize it.
Hospice says he’s one of their most difficult patients. So, I make sure I’m there to ensure that they aren’t kicked out. They feel that it is sure willpower keeping him alive. Maybe so. Right now, I take each day as it comes.
Dear Daughter, welcome to our remarkable family but so very sorry to hear about your Father and his journey. As Catherine wrote I do have a list of Signs the end is near and would send it to you if you send me an email.
My husband saw his whole family as he was in his passage. He would extend his arms and wave them toward him and envelop them in a bear hug, give a kiss. The only words he uttered for hours were “Oh, Mom”. It was awesome and I felt privileged to be a part of this phenomenon.
With all these things that I consider awesome I feel compelled to say a few things that you may find helpful to help your Father. When a Cancer patient is in pain it must be put under control or it gets many times worse and becomes uncontrollable. I feel on this subject that it is of utmost importance to get the pain under control. You would be helping you both by getting Hospice involved and they can tell your Father that he needs to get the pain under control.
Wishing you the very best, and please keep us up to date on how he is feeling.Dear Dayghter,
I am also sorry to hear that your dad’s health is deteriorating and I understand how difficult it is for loved ones to know the end of life is near but not know the timing or what they will experience. We recently lost my aunt to a different cancer. Her body was showing definite signs of shutting down yet she lingered in and out of consciousness and had varying energy levels for four weeks! It was very stressful on her daughters. Even when patients are not lucid, I believe they can feel our presence in the room and holding hands and talking to them, even with no response, brings them comfort. I have heard many reports of dying pTients experiencing visits from deceased loved ones days or hours before they pass. A week before she passed, my aunt reported several visits from her husband and mom. This brought her great comfort. I’m sure not everyone experiences this – probably ties into individual belief systems, I hope this is helpful.
DebbieDear Daughter,
I am very sorry to hear of your Dad’s condition. It is so hard to watch people we love suffer. I know Lainy often sends members information on signs to watch for that indicate the end is near. Since she is on vacation, please let me know if you would like me to send them to you in a private message or email. I had to search a bit, but finally found them in my email.
And, I agree with Shellina that you should try to get all the help you need to make him comfortable and pain free.
Take care,
CatherineIt sounds to me like he could be very close. His bilirubin must be very high since they were not successful in inserting a sent. The fluid is likely ascites. The confusion is likely caused by a high ammonia level which is due to his liver function. My husband passed two years ago. He also chose no treatment. Your dad is very brave to do this without pain meds. I hope you can get hospice in to help. Not only will they help him, they can help you too. Good luck and God bless you and your father.
Hi DaughterW
I too had inoperable/terminal Bile Duct Cancer diagnosed with a relatively short lifespan prognosis (3 months) However here I am almost 2 years later.
My approach is to be as positive as possible, keep busy and avoid any negatives. I have a website/blog that you may find of value – http://www.jacktiley.com –
Best wishes from GoonerJack
My father was diagnosed in mid February with 3 weeks to two months to live. He’s still alive 3 1/2 months later. Jaundiced since mid January with no treatment, he has grown weaker and sicker each week.
We had a biopsy to confirm that it was bile duct cancer and to insert an internal stent. The stent was unsuccessful due to the spread of the cancer. Seven doctors recommended comfort measures only, no treatment.
My father continues to grow weaker. He can no longer get to an upright position with help. Yet, he refused to give up. He won’t accept staying in bed or a lift chair. He is in significant pain, but he won’t take strong pain pills. While I hate to leave him in pain, I have to accept that it’s his choice. I have told him that I will call Hospice to get stronger meds whenever he wants.
He’s gaining about 10 lbs. of fluid each week. He’s becoming more confused. He rarely eats more than a half of a sandwich a day. Does anyone know how to pinpoint the end or the beginning of he end? I don’t know how long this continues, I keep jumping to do whatever so he doesn’t injure himself.
One day when I leave him, I think he can’t last another week. The very next night when I leave him, I think he can make it another 2 to 3 months. I don’t know how to predict a lifespan. Do you have experience to share?
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