Topic: Dad now under hospice care- a chronology of what we experience

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

Re: Dad now under hospice care- a chronology of what we experience

Rank,
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?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Dad now under hospice care- a chronology of what we experience

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Dad now under hospice care- a chronology of what we experience

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.
God Bless,
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Dad now under hospice care- a chronology of what we experience

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 family

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dad now under hospice care- a chronology of what we experience

Dearest Rank,
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.
Fondly,
Barbara

Re: Dad now under hospice care- a chronology of what we experience

Rank,

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.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Dad now under hospice care- a chronology of what we experience

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.

Re: Dad now under hospice care- a chronology of what we experience

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.

Re: Dad now under hospice care- a chronology of what we experience

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.

Re: Dad now under hospice care- a chronology of what we experience

Hello - 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.

Re: Dad now under hospice care- a chronology of what we experience

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, Mary

Re: Dad now under hospice care- a chronology of what we experience

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.

Re: Dad now under hospice care- a chronology of what we experience

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Dad now under hospice care- a chronology of what we experience

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.

Re: Dad now under hospice care- a chronology of what we experience

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

Re: Dad now under hospice care- a chronology of what we experience

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.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dad now under hospice care- a chronology of what we experience

RANK....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

Re: Dad now under hospice care- a chronology of what we experience

Carolyn
So very well said...what I was trying to say!  Your last few sentences said everything.

Jean

Re: Dad now under hospice care- a chronology of what we experience

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.
Karen

Wishing all God's blessings!

Re: Dad now under hospice care- a chronology of what we experience

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Dad now under hospice care- a chronology of what we experience

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

Re: Dad now under hospice care- a chronology of what we experience

My thoughts and prayers are with you.  My mother is in a Hospice facility and wants to go home - but is is unsafe for her as she is so weak and is now bedridden.  It is so hard to see the ones that protected and loved us slip away and not be able to ask for their guidance as we are trying to do the best we can for them.   May tomorrow be a little better for both of our parents.

Re: Dad now under hospice care- a chronology of what we experience

Dad was discharged from the hospital yesterday and came home with 24 hr hospice care.  He's extremely weak, but still eating and drinking.  He sleeps most the time.  It's 5:30 pm and the last time he urinated was 2am this morning and it was only a little bit.  The hospice nurse that his body is not able to break down what it's taking in.  Soon he will stop eating and drinking.  His speach is slurred during the little bit of time he's awake and he doesn't feel like talking. 
Yesterday his blood pressure was going down (still within the low normal range) and his sugar was going up.

Will keep you posted.

Re: Dad now under hospice care- a chronology of what we experience

Dad passed away Tuesday October 7th.  We are all so very sad right now.  The viewing and rosary is tomorrow with the mass and funeral on Saturday.  My mother is in so much grief that I can't even describe.  I will write about his final days later when it's less painful.  Again my hope is that in describing Dad's final days someone else will know what to expect.  I know that was something that was important to my mom and myself. That fear of the unknown....

God bless all and I so hope and pray that a cure is found soon.  I hate this disease.