Dad now under hospice care- a chronology of what we experience
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RANK,
As I read the progression of your dad’s illness, it makes me sad, as I feel my dad is headed down the same road. He will leave the hospital within the next couple of days and will go to a nursing facility. We still hope he can gain enough strength to go home, but it is unlikely.
I will pray for both our dads.
Jan
Carolyn,
Your last sentences meant a lot to me also. “Love can always be communicated thru silence. This disease does NOT take that away from us. Peace to your heart.” I went through a lot of what Rank is now experiencing before my husband past away. It has now been a month & I still feel that a lot was taken away from me in the end with so much being left unsaid & undone. Your words are a comfort to me & my family at this very sad time in our lives. In the end all we could do is be there for him & make sure that he was comfortable & not in pain.
Rank,
You will need all the support & strength you can get to be strong for yourself, your Dad & your family. This site & the people here can help. No one but us who have or are experiencing the pain & effects of this disease can really know what it is like. we are all here for you. You will be in my thoughts & prayers.
Darla
Racheal,
My thoughts and prayers are with you and your family at this horrible time. Know that your Dad truly loves you all. Hopefully the “experts” will find a medication to help him have more peace and give you the time to verbally commuicate what he already knows…how much he is loved.
KarenRANK….I am very sorry to read that your Dad is going thru such a terrible ordeal from this disease. This poor man, who was once so strong and independent, must feel such emotional pain not being able to do what he used to do. At times my brother would get delusional and say crazy things and we would get worried that he might not snap out of it……but he always did. The doctors said many things could have caused his delusions (the medicine, lack of oxygen to brain, not wanting to accept what was happening, etc.) He doesn’t get them anymore since he is now at home under Hospice care. Just know that whatever your dad says, he really loves you and your mom. Just sit by his side and write down your thoughts to share with him at a better time. Love can always be communicated thru silence. This disease does NOT take that away from us. Peace to your heart. Carolyn
Rank…have you had a chance to talk to the physician, or the nurse in charge? Or, the social worker at the hospital? You might also want to contact Hospice beforehand while your Dad is still in the Hospital. Someone, just might come up with something to make your Dad more comfortable.
Please, stay in touch.
Sending tons of good wishes your way.Rank
I have been thinking so often of you and your family since you posted yesterday. It must just be heartbreaking to see him like that. And just when you want so much to spend loving and meaningful time with him in his last days. I once read a study about what symptoms patients have that families find the most difficult to deal with, and it is confusion and agitation. Just when you so much want to talk with him and to let him know how much you love him…and he is only agitated and angry. He is not himself…he is not the dad that you know and love. But he still is…we cannot know what he is really understanding and he may well still understand that those around him love and care for him. I think, despite everything, all you can really do is be with him and your mom, and after he is gone you will know that you did do all you could. I so hope that they can find a medication that can help him to feel at peace. I have no answers…I just hope you can all find peace in his last days.Know that my thoughts are with you and your family. I think you have all been so strong during this difficult situation.
Jean
Dad continues to be in a confused and agitated state. He’s in the hospital and has been refusing to take medicines. Mom has to stay away because he starts asking her to get his shoes and clothes…again trying to leave. Doesn’t seem that anyone knows what to do for him. Our hope is that they can find the right medication to give him some peace. Then we want to take him home and plan on having 24 hr hospice care. His urine is dark and his stool is white and he’s itching all over. His abdomen is swollen. I was not able to visit with him today because I was afraid that he would be mad and angry with me. I makes me sad not to be able to help him right now.
I hear he’s still eating a little (much less than he used to). We’ll keep praying and see what tomorrow brings.
Hi Rank,
I’m so sorry to hear what you and your family are going through right now. I’ve never been in the situation that you have, but it sounds like you are doing the very best to comfort your dad and to be there for your dad.
I just want to tell you that you, your dad and your mum are in my thoughts and prayers right now.
Gavin
Hi all, thank you for your continued thoughts. Today was a rough day. Dad did not sleep last night. He layed there with his eyes open looking around. Mom would ask him a question and he would answer but that is all. As the day progressed he got more and more confused. He was asking questions and saying things that did not make sense. At about 7pm he started asking mom to get the phone so that he could make the phone call so they could leave. He wanted mom to pack their things so that they could leave. Not sure where he thought he was going. When mom didn’t get the phone he just got agitated and angry. Mom got scared with the way he started behaving fearful that she would not be able to control him. So I called 911. That was another fiasco. They finaly convinced him to allow them to take him to the hospital. This was after 3 policemen and 3-4 EMT men all in the room. They have him in ER right now and the blood work shows high liver enzyme count and high ammonia. They want to start him on an IV but he’s refusing treatment. Hospice says that they will move him to a “resped” (?) facility tomorrow. Which is a nursing home for a maximum of 5 days. I do not believe that this facility is appropriate for my parents.
I’ll keep you posted. I need to find out more about how the mental state is affected by the high liver enzyme and ammonia.
Thank you for all your input. I read them daily.
Carolyn, I pray for peace for you and your family. My father has not complained to much about pain. Only the weakness and tiredness.
Rank.
I’m sorry you are going through so much and your mother too. It is so hard to watch your loved ones be so sick. High bilirubin does cause chills. Whenever Tom gets those I always suspect that whats going on. I hope they can make your Dad comfortable. I can’t really imagine how hard it is to have him be so distant from all of you but everyone handles things differently and it is just his way. None of us know how we will react when our time cames. I know he knows you all love him and he appreciates all of your care. Hopefully the meds will help him. Take care of yourself and your Mom.
Carolyn,
I hope they can get your brothers pain under control. It’s hard to believe this cancer can be so aggressive! I hope he gets his wish and makes it long enough for the election. Take care of yourself. We all have to try and stay positive with our loved ones and it can be very hard!! My thoughts and prayers are with you and your brother. Take care, MaryHello – After reading all of your stories, I am just amazed at your courage and strength in dealing with the tremendous sadness caused by this monsterous disease. My brother was dx with CC in 3/08….had his liver resected in July 08….and this cancer has already returned to his pancreas and small bowel, heading for his lungs. Hospice will come on Thursday and he has been given 3 to 5 weeks. His hope is to make it to the elections so he will know who our next president will be. He can’t eat anything and is getting so thin……just wasting away before our eyes and nothing we can do. I hope I can share your courage, but right now I just can’t stop crying. He is only 66 and a great guy. I hope that he will not suffer a lot of pain……..my heart is breaking for him and for everyone who suffers from cholangiocarcinoma. Seven months ago I never heard of this disease….now I can pronounce it, spell it, and hate it.
Hi all, Thanks so much for your inputs and well wishes. I learn so much from all of you. I did’t know that a high bilirubin count would produce chills. Perhaps that explains the chills dad is having.
Dad continues to weaken. He sometimes gets up and movs to the recliner or goes to the bathroom but more often he lays in bed and mom brings the hospital urine cup for him so that he doesn’t have to get out of bed.
We find that he wakens several times during the night with the urge to urinate and then only urinates very little. He’s still agitated and doesn’t want anyone talking to him or talking around him. It makes it very difficult for the family. We so much want to talk with him and hold his hand and tell him how much we love him but he just doesn’t want to be bothered.
Mom’s given him a couple of ativans today to help with the anxiety but we’re not sure it’s working. He complained of pain a little today and she gave him Tramadol. Since he won’t talk and doesn’t like to be asked questions we can’t really determine if he is in pain. We’re not quite sure how clear his mind is because he refuses to talk. This saddens us so much. I wish so much that we could spend these last days with him loving him and him imparting his wisdom and advice before he dies. I’m so sad that I can’t talk with him because he just doesn’t want to be bothered. He won’t open his eyes long enough for us to see if his eyes are yellow from jaundice.
Hospice came by today but she had a hard time with him too. Hospice delivered a hospital bed today. We’ll see how he does with it tonight. We have a wonderful oncologist who provides his home and cell number to his patients to call him any time we want. So I called Dr B today and told him of dad’s current symptoms. He says that it sounds like the disease is progressing rapidly, particularly now that we’ve stopped all treatments. Dr believes that the liver/bile duct may be obstructed so the stents much not be working. He said that once that starts happening the liver will stop functioning and that he will go into a coma until he passes.
Mom is so sad. They have their 49th wedding anniversary in November. And they’ve been together close to 60 yrs. She so much wishes to be able to talk with him and let them comfort each other. She doesn’t want to remember him so angry because he especially takes it out on her. She has not left his side since Nov 2007 when this all started. She has slept in hospital waiting rooms, ICU, hospital rooms, lobbies you name it but she could not bear to leave him alone afraid that he could get neglected. Now she’s just afraid that he would pass and she not be there.
Sorry this is so long…I feel like a rambling. I just hope that someone out there can learn something from what we’re going through.
God bless you all. This group is such an inspiration.
Rank,
My heart goes out to you. We as a family were there just one month ago – seems like years in some ways. Our dad also was too weak to lie in the bed properly, and had terrible right-sided pain and back pain, so could only lie on his left side across the bed. Be very watchful, as your dad gets weaker but still tries to get up and go to the bathroom, etc. We found Dad on the floor one night, he had been there for an hour and was too weak to call for help. That’s when we decided he needed someone to stay up and awake all night for him, and also a hospital bed. He hated the idea of going in that bed, but thankfully, only had to spend 24 hours in it before he passed. We did give him some morphine drops and haldol as needed, recommended by hospice for agitation. He was very restless that last 12 hours, but couldn’t get up at all because of very low blood pressure. He also stopped communicating verbally about 10 hours before he died, but at last we found a way to communicate with him and he made known his last wishes – for quiet, calm, and low light in his room. Then when the stage was set, he simply slipped away. We were all there, surrounding him with love, and he passed peacefully with all his children in the room at his side.rank; as a professional caregiver i’ve experienced the end of life with many a soul. You are wise to keep him alert; but use caution when deciding about painkillers. i have seen patients given far too little per family instruction. Please do not let your loved one suffer for the sake of a last goodbye . A peaceful passing restores the souls of all. God bless you as you travel this rocky road…this, too, shall pass.
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