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Thread: Suggestions as your loved one nears the end

  1. #1
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    Suggestions as your loved one nears the end

    I have been spending some time reading this forum today and thought, for many, it might be the time to pen some suggestions through my own recent experience. Many of you have followed hubby's long 13 month journey - passed on July 28th...if not just read my posts to understand the journey - I won't do a recap.

    Jon was admitted to the hospital on July 10th, one year to the day from being diagnosed, first trip to the hospital other than 3 X to ER of our 13 month journey. By the 15th he wanted OUT and to go home. They had done a "code blue" earlier in the day because he could not catch a breath and was turning blue but yet he wanted OUT. I was so unprepared and ill-equipped to take care of a 'patient' in the home but knew home is where he wanted to be...I was SCARED but knew he was too. We came home with a cane and oxygen tank turned to 100% - you have be extremely cautious turning oxygen so high for people with COPD....the brain will eventually think it no longer has to breath and will stop, so if there's COPD in the picture make certain you talk through with a respiratory specialist before you get your loved one home.

    Turn your house into a hospital - good cane, walker, wheelchair, porta potty, sheet, turning sheets, urinal, towels/washcloths, a common place for all meds, make charts to monitor times of med intake and if you are taking vitals, and above all - have a baby monitor, maybe two - the monitor will become your undying friend during this time - they give you some flexibility to move around your home. Continue to stay as positive as you can, encourage food and liquid intake, but don't force. Talk a lot, laugh when you find something with humor (even if you don't), and if you haven't before now - ask what they want for their funeral....they are ready to give some input and I think they appreciate being asked.

    You are going to need all the strength you can muster so make sure you get your sleep, eat, and take your own meds. Once you have accepted that this is not going to end well - get the best hospice available. Let the screwed up politicians say want they want about funding or not funding Medicare but Medicare pays ALL the BILLS for HOSPICE!!! Hospice is not there to heal but they are there to make your loved one as comfortable as possible. From my experience and what I have read - when you have reached this point PC moves quickly and comfort is what we, as loving caregivers, can give freely. Remember hospice is there for you too so take every advantage of support and advice that they have to offer.

    Remember that the last bodily function to leave us is our hearing so make sure you talk, talk, and talk some more....you will be surprised - when the pulse rate is so weak some good soft conversation and the pulse rate returns to normal and a slight smile can be seen....you are being heard. My son, from CA, called one night to talk to Jon and I said, "he can't talk" and was told, "but I can. please prop the phone up to his ear". The son talked for over 30 minutes and I know Jon heard every word being said....

    Don't be afraid to get your loved one out of the hospital and bring them home where they belong.....you will be at peace believe me - you will find peace knowing they are where they want to be. As difficult as it might seem; it is the right thing to do. I hope this helps just one person's journey....it helped me find peace to write it down
    Last edited by marykins; 08-06-2012 at 06:39 PM. Reason: spelling

  2. #2
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    Wow, this is powerful. My stomach was dropping as I read this. Death has always been something that happened to other people. Not my family. Grandparents, someone who knows someone, but now it is something my immediate family (dad) may have to deal with in the not so distant future. It is so incredibly difficult.

    We are at the beginning of this journey, and I have high hopes that folfirinox will bring some good quality time with my dad to my family. I try not to think anything but positive thoughts and think about those that have survived for extended periods with this dreadful disease.

  3. #3
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    You are absolutely right! In most cases this is not our journey but a journey we have chosen to take with someone we love dearly. Thank you for putting it in writing! Hugs to you at the end of the journey. I hope you plan to stick around, it seems you have a lot to offer to others on this journey!
    Spouse/Caregiver of 56 yr old male
    Diagnosed Primary CNS Lymphoma 2/2011
    HDMTX Chemo- 8 cycles
    HDMTX Maintenance Chemo- 11 cycles
    Complications: clots, kidney issues, slow clearance of
    chemo, dermatitis
    11/2013 Recurring clots in lungs/legs
    Scan 12-27-13 all clear
    Scan 3-13 all clear
    Next scan in October, done and all clear!
    Went early for scanxiety in Aug 2014, all clear!
    Scan Feb 2015, all clear!

  4. #4
    Super Moderator Top User DebbieC's Avatar
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    Mary,

    Thank you so much for sharing this! I know that writing this might have been difficult in some ways, but so many people will appreciate the time you took to write this. Because of that, I would like to stick it to the top of the forum for a while so it doesn't just disappear down the line. If you object, just let me know and I will un-stick it.

    Thank you again!

    Debbie
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  5. #5
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    daughter12, I did not write this for anyone to give up on HOPE - hope and attitude, until the researchers discover a cure, is what the big "C" has such difficulty dealing with. Once you allow HOPE and ATTITUDE to waiver, for even a moment, big "C" finds a path to destroy. Our moment of letting our guard (hope and attitude) came when hubby's 48 yr. old daughter died, June 21, 2012. ALWAYS hope! ALWAYS have an attitude that is positive. God's speed to a good outcome....all on this forum live for GOOD news although we all realize that path is not easily found or followed. Good luck

  6. #6
    Super Moderator Top User DebbieC's Avatar
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    I don't see this as anyone giving up on hope, but for help to people who are facing this. Unfortunately, with cancer this is reality. I am not giving up hope that my father will be around for a considerable amount of time to come, but I also know that eventually, I will be faced with coping with his death. Until then, I will keep hope alive! And when the time comes, I will remember your words, Mary!
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  7. #7
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    The family, in lieu of flowers, is doing a mass donation to Johns Hopkins pancreatic cancer research. Looking for the forms for donation I found a book that may be of interest -
    Pancreatic Cancer: A Patient and His Doctor Balance Hope and Truth (A Johns Hopkins Press Health Book) [Paperback]
    Michael J. Lippe (Author), Dung T. Le (Author)


    http://www.amazon.com/gp/product/142...SIN=1421400626

    It was authored by a stage IV patient and the oncologist - side by side perspective in the battle.

  8. #8
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    Will share this with my children and sister who will care for me in the end. My sister and I took care of both parents at home for their end of life. We took turns being at bedside. It wasn't awful...a blessing. They did hear every word I am sure. It is odd to think I will be with them soon. Thanks for your heartfelt input.

  9. #9
    Thank you for sharing this. I had the honor of holding my husband's grandfather's hand as he passed away in November of 2011. I say honor, because it was. Now, he was an 87-year old man and did not have pancreatic cancer, but I was there with him at the end, talking to him, rubbing his arms and his head and just talking to him. My husband and his grandma had to leave the room for a bit and during that time I talked to Grandpa, shared with him what an amazing grandfather he had been to his three grandson's and the wonderful memories they have of him, and what a wonderful great-grandpa he was to my boys. I told him just how much he was loved, so very loved and that we would all miss him, but if he needed to go we would be with him and we loved him. He passed away 15 minutes after I said all of this. I believe he heard each word I said.

    I know when my dad's time comes from this dreadful disease, which I hope is much, much farther down the line, that I have the honor of being with him and holding his hand and sharing with him how loved he is.

    I love what your son said when he called and I love that he just talked to his dad for 30 minutes. This is such a blessing.

    Thanks again for sharing this.....

    Kaye
    Kaye
    www.honoringdad.blogspot.com

    Dad diagnosed pancreatic cancer October 2011
    chemo/radiation Oct-December 2011
    Whipple- January 2012
    Found out cancer spread- May 2012
    Stopping all treatment because it's not working- December 2012
    Discharged from hospice December 2013
    Cancer's Back- June 2015
    Hospice Care Again- June 2015
    Passed Away- October 26th, 2015

  10. #10
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    Maryland
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    Of course, so timely as we have started this week with hospice, what a relief not to have to go down to a doctors office again! I know my H is comforted by the fact that a nurse visits him each day and adjusts his meds to suit. We are seeing the decreased eating, longer periods of sleep, weight loss and turning inward. I am taking care of all those things that need to be done; funeral home, legal and financial stuff, bringing the kids home to be with their dad in his final journey. The Dr told us 1-3 months but I panicked this morning when I realized that was two weeks ago, time seems to be going to quickly. But his pain is managed, he is surrounded by all who love him (human and canine) he is understandably frightened but also at peace with his decision to cease treatment. Now we just do everything possible to make him comfortable, and wait.
    9/22/11 - Husband of 23 years diagnosed with Stage IV Pancreatic Cancer - asymptomatic
    10/11/11 - clinical trial @ Georgetown Hospital Oxaliplatin, Leucovorin, 5-FU and trial drug ABT-888
    2/1/12 - Gemzar and Xeloda
    3/19/12 - CT shows liver lesions shrunk 30% and CA19-9 down to 35!
    8/1/12 - All tumors have grown by 100%, stopping chemo - we will let it be.
    8/31/12 - A peaceful and pain-free death, we couldn't have asked for anything more

 

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