Discussion Board Forums Supportive, Palliative & Hospice Care Dad now under hospice care- a chronology of what we experience

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    Rachel, your experience with your Dad was very much like my husbands. Just reading it was like re-living it all over again. It is very hard, but I keep thinking that he is better now, pain free and most of all cancer free. After nearly 11 weeks my children just asked the other day for details about how thier Dad died. I wish I could explain the rattle to them, but at the same time I don’t want to scare them. I wish none of us had to go through this, as it is so hard, but I keep hoping and praying for a cure also so others don’t have to experience this pain. Stay strong and know that there are others out here with the same pain. – Colleen


    Rachel, I’m so sorry about your Dad. Thank you so much for posting your journal entries. I’m sure they will be helpful to many people. None of you will be okay for a long time. It’s so hard to lose our loved ones, but I know you will make it. Continue to post as you’re able. Take care.



    Finally getting the courage to write about his last days. I hope this helps someone else out there….
    Dad passed away at 8:30pm this evening. He was surrounded by his love of 60 yrs and 3 of his 4 children. The last couple of days have been extremely diffiult. I will come back to write about our hospice experience but for now let me tell you how it went for dad

    By Friday 10/3, he was sleeping most of the day. He was able to get up once to sit on the recliner with the help of hospice and my mom and then he didn’t move the rest of the time till he went to bed. He continues to take in fluid and eat very little. His urine output is almost none. He went 16 hrs without one yet he’s drinking plenty of fluids.

    By Saturday 10/4 he stayed in bed the entire day. He slept most of the day. He ate almost nothing but was still drinking his fluids. However his ouput was nothing. I believe he finally did 500 cc but that was for a period of over 18 hrs. He occasionally opened his eyes and tried talking but his speech was not understandable which frustrated him. When he did say something it was about something no one could understand. We had a priest visit to pray and do last rites and dad was telling the priest something about a baptism in a large church with 500-600 people. He then opened his eyes to me and started talking about Assisi in Italy where St Francis resides. Told me that it would only be $5 more so why not go. He slept on and off then later started getting restless. Through the night he became anxious, agitated and extremely restless. They had him on very small doses of Ativan.
    That night he started jerking movements and uncontrollable hand movements. The jerking movements were like when you first start to go to sleep an you have an involuntary jold in your leg which startles you awake. He had these movements the entire night. Even tried pulling at his shirt to take it off. He would also go through periods of moving his hands like he was picking or rubbing his shoulder, neck face or shirt. That really was a bad night. During one of those startling jolts his jolted his legs off the bed and tied moving his upper body. Thank goodness they caught him and straightened him up and put the bars up on the hospital bed.

    Sunday 10/5 he was still restless and his breathing became labor. He could not comprehend things around him. A couple of times when the football game was on he would watch the TV and even call a play (the play wasn’t happening but at least he comprehended that he was watching a football game. His condition became increasing worse. He could not comprehend when was being asked. He continued with the restlessness.

    Monday 10/6 he continued with the restlessnes and became almost non responsive. By the afternoon he started the “death rattle”. That carred through the night and never went away. He was being treated with Ativan, oxycotin and something to remove the secretions in his mouth. He slept the night better than he had been sleeping. Still has not gotten out of bed. His urine output was a mere 200 cc. And he had at least 3 sodas, water and a boost milkshake.

    Tuesday 10/7 the death rattle was very loud the BP varied from normal to low 84/60, his pulse rate about 120 beats/min. After listening to his “rattle” you get used to the cadence or rhythm of his breathing. You could talk to him and know his could hear even though his eyes were closed because he would squeeze your hand to answer. The hospice nurse didn’t believe us when we told her something had changed. This was during shift change and no sooner than the nurses shift that his blood pressure only had one number…the high number. The nurse told us that this is what happens. It was within 30 mins and dad was gone. We left him alone with mom so that she could talk to him and have her time. It was a very emotional time. Dad had 3 of his kids with him and holding him. We told him over and over how much we loved him and that it was ok for him to go. ….that we would all be ok.

    Now after not quite 2 months…I suppose we’re ok but it still very hard. It doesn’t seem real that he’s gone. Today would have been mom and dad’s 49th wedding anniversary. We had a mass in his honor today. We all miss him especially mom. She’s yet to be alone. Someone has been staying with her since dad passed. The holiday season is going to be incredibly hard.

    I continue to pray for a cure….


    I was so sorry to hear about your dad. It sounds as if he was very loved and that is a great tribute to him. I hope he was able to find some peace as time went by and that you were all able to be there with him.
    Sending thoughts and wishes for strength and peace to you and your mom.



    Rank— May your dad rest in Peace and God give you and your family the strenght to deal with this time of grief.
    God Bless,


    I am so very sorry for your loss. Your experience through this incredibly hard time has been of tremendous help for those of us who have loved ones headed down the same path – with and without hospice care. My dad just began hospice care at his nursing facility, and I thank you for sharing your experiences and helping us know what to expect.

    My thoughts and prayers are with you and your loved ones.


    Dear Rachel and Family,
    So very sorry on the loss you are experiencing. I pray your pain lessens everyday as you remember all the joy your Dad brought thoughout his lifetime. Prayers of comfort….


    Dear Rachel, I’m so sorry. You and your Mom hold on to each other and you’ll feel your Dad’s love. I pray for strength and comfort for you both.



    Very sorry to hear of your dad’s passing. How lucky he was to have you and your family ease this last journey. He has only left the room and remains in your hearts and memories forever. Your family is in our thoughts and prayers.



    I am so sorry to hear of your Dad’s passing. Know that he is now in a better place & is no longer suffering or in pain. I console myself with the thought that although our loved ones are no longer here physically, they will be in our hearts forever. Just remember that no matter what this disease has taken from us, it has also made us stronger. I know how much pain & grief your mother must be experiencing as I am doing the same. You & your family are in my thoughts & prayers during these trying days. All we can do now is go on & try to make a difference in the fight against this terrible disease. I know that is what Jim would want me to do & I am sure your Father would want that too. We can help & support each other & get the word out so that more becomes know about CC. Please post when you are able. We are all here for you.

    In Knowledge & Numbers There Is Strength.

    God Bless You & Your Family,



    I am sooooo very sorry for your loss. You and your family are in my prayers. I lost my dad 2 months ago to CC. His story is so eerily similar to your father’s story, that while I tried to write to you earlier, I just seemed to break down from the memory of his last week.
    I am currently enroute with my mom to my dad’s hometown in PA. While there, we plan to participate at mass at the historical church my dad belonged to until he moved away. I will light two candles…one for my dad, and one for yours. God ease the pain in your heart.


    Dear RANK,
    I am so sorry to hear of your dad’s passing, and the pain and grief you and your family are going through. My heartfelt sympathy to you and yours.
    -Joyce M


    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.


    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.


    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.

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