A week ago today...

ritawaite13
ritawaite13 Member Posts: 236
in Esophageal Cancer #1
One week ago today, my husband passed away from EC after just a 15 week illness. This past Saturday, we held a Celebration of Greg's Life. We held it at a VFW Club where Greg had been the Commander 20 years ago. Our two adult children read a beautiful and humorous eulogy and we invited friends from the various aspects of Greg's life to share a story about him. Our 9 year old Grandson also talked about his Papa. About 450 friends and relatives came and it was absolutely wonderful. Near the end of the program, just after the prayer, we had a slide show of our lives, starting with the dating years and ending with the photo I've used as our profile picture here. While the slide show was being shown, a friend sang Remember When by Allan Jackson - a meaningful song to us. My husband was a giver and in that regard, we donated his body to the University of Minnesota Medical School for research. This also was a huge cost saver because they take care of the cremation process too. We will get his remains back in about 18 months so we have time to decide what we want to do.
I have some advice for those of you who are the caregivers and who's patients are nearing the end. Give them the drugs!! At first, I (we) thought that it would be best to keep him aware of what was going on so we could communicate. This was a big mistake. When someone is nearing the end, they can suffer from what is called Terminal Anxiety. Greg had this really bad and he wanted to wander around all night long. Because he'd also had a stroke, he was quite unsteady so when he was up, so was I. Also for the final 3 days of his life, he became very agitated and combative which was completely out of character for him. He also had hallucinations which were very frightening to watch. When the hospice nurse came at 5 AM on the day before he died, she laid out a schedule for drugs including oxcodone scheduled every four hours and I could give more every hour if I noticed his brow furrowing because this is an indication he's in pain. We also doubled his fentanyl patch and gave him atavan and halidol for anxiety and hallucinations. He mostly slept for the last 24 hours of his life which was a blessing. He was at home and I was right next to him when he died very peacefully. In looking back, we should have been giving more drugs during the last week of life. That would have kept him comforable and been much easier on me. I appologize if this sounds a little too factual but I know most of you don't want anything sugar coated so I've tried to lay it out the best I can.
Lee and Chantal & Eric and Michele, I know you are getting closer to dealing with this and I am praying that things go well for you all.
Hugs, Rita

Comments

  • cher76
    cher76 Member Posts: 292
    #2
    Rita,
    It sounds like you had
    Rita,
    It sounds like you had a wonderful celebration for Greg. To have so many friends and relatives join you speaks to what a great person Greg must have been. Remember When is one of our favorite songs as well; I can't hardly listen to it anymore without breaking down in tears.
    Rickie also has been experiencing terminal anxiety and was prescribed atavan yesterday. Last night was the first real sleep I have had in almost a week. We also upped his fentanyl patch to 150 mg and are taking the dilaudid more.
    Take care of yourself now.
    Cheryl
  • jojoshort
    jojoshort Member Posts: 230 Member
    #3
    Beautiful
    What a beautiful sending off you gave your Greg. How comforting it is to have this memory with you.
    Yes, I agree: Keep the patient as comfortable and as anxiety-free as possible. Atavan is wonderful for anxiety and also for relaxing the breathing. The big guns of pain control, oxycontin and dilaudid and morphine, can and should be used to allow the patient the dignity of a peaceful passing.
    Steve was using a fair amount of drugs during his last weeks. It was amazing to me how he could still be lucid, funny and engaged with all that flowing through his system, but indeed he was. We joke that he was a trained professional, being a child of the 60's and early 70's..
    May you find peace in your days. It gets easier as time goes on, but don't hesitate to call and find support when you are needing it. People want to do something for you, and you should let them.
    Warm regards,
    Jo-Ann
  • chemosmoker
    chemosmoker Member Posts: 501
    #4
    YOU are a SPECIAL person too!!
    Rita,
    I am So glad you are still sharing and giving of yourself to the others still here suffering. It takes a very selfless person to do what you are doing. I applaud your character, it speaks volumes to me and others about how wonderful a wife and caregiver you were to Greg up until the end.
    Please don;t continue to beat yourself up for trying to have Greg present; I think that is more human and humane than you realize, and quite normal. I would want to be present with Michelle too and we could make that mistake too, but thanks to you now, we will probably avoid that fate. Thank to you.

    Greg's celebration show just how many peoples lives he touched and what a special person he was and will always be remembered as. Thank you for sharing that with us all. Again, shows your giving side that you cannot hide!

    I am sorry for your loss and can't imagine mornings like this where I have to contend with pain and getting on top of it each morning for one more blessed day of being able to be Eric. YOU on the other had have to wake up and go on without your Greg, and still fave all the day to day grind and pains without your other half and helpmate and soul-mate.
    Just KNOW from me he IS in Heaven watching down over you. You are so loved. Thank you for posting and sharing the drug issues and Greg's beautiful ceremony. It means a lot to me.

    I love you and think about you as more than a friend.
    God bless and hold you through this hard time.

    Eric
  • mruble
    mruble Member Posts: 174
    #5
    Rita, I've thought about you
    Rita,
    I've thought about you and your family frequently this past week and have continued to pray that you have strength and calm. It sounds like the service for Greg was wonderful. I'm guessing, too, that before Greg's passing many people were able to share with him how he'd touched their lives - one of the few blessings of cancer, II suppose. And he continues to give even now. But clearly Greg was not the only giver in your family. Even in your grief you continue to read and post to this forum, helping light the path for those of us coming after you. And for that I thank you, friend.
    Mary
    Stage IV caregiver
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • Donna70
    Donna70 Member Posts: 852 Member
    #7
    unknown said:

    This comment has been removed by the Moderator

    Rita thank you
    Dear Rita,
    I want to thank you for sharing with us the beautiful service for Greg and your love for him surely shines thru. I also want to thank you for sharing what happens at the end. I have mentioned more than once that there is no reason for a person at the end to have to have unrelenting pain. As Sherri mentions above, you can have both, the last talk and relief from pain. In this day and age it would be barbaric to have a person in pain and agitated. Sometimes, it is better to have them go to sleep and hold their hands and you can speak to them, often they can hear you but cannot respond. That is better than memories of struggling and pain filled moments. Thank you in your mourning to point the way for so many others who have to follow this path. We all will go down that road ourselves eventually. take care and thoughts and prayers are coming for you.
    Donna70
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    Thank You
    Hello Rita and family
    May I first say that I am sending you my deepest sympathies on your recent loss. Thank you for sharing your experience. Thank you for your knowledgeable advice. I was a caregiver for my dad. He passed in March 2010 after a 16 month battle with EC. I agree, now, with you about giving the pain meds. My dad was given morphine. He experienced all of the same kinds of side effects. Mom and I were so worried, we should have just let him go, not stop giving them to him. My dad slept for two whole days before he passed. We feel he had to prepare for his new journey. May Greg and my dad, Ray now finally be able to R I P without cancer!! God bless you and your family at this most difficult time. Give yourselves lots of time to grieve. We are going on two years and just starting to be able to accept his passing. Keep in touch.
    Tina in Va
  • paul61
    paul61 Member Posts: 1,391 Member
    #9
    A string of special moments
    Rita,

    It sounds like the celebration of Greg's life was very special for a wonderful special person. I am glad his friends got to say goodbye in a meaningful way.

    I think you give great advice about insuring that enough medication is given to make someone comfortable at the end of their journey. I think in many cases medical professionals are hesitant to provide enough medication because they are concerned about over prescribing. With the medications we have today there is no reason for someone to be in pain.

    I am so glad you were able to make him comfortable at home.


    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • BMGky
    BMGky Member Posts: 621
    #10
    What a wonderful tribute!
    What a wonderful tribute! It seems EC attacks just the nicest of people. I hope you are comforted by the prayers and well wishes of this EC family.

    I appreciate your frankness. In some instances one may think they don't want to hear what needs to be heard. But it is so important you do learn such information. You were very thoughtful in thinking of others in your advices. I know it will be helpful to those who read the EC postings.

    Deepest condolences. BMGky
  • jim2011
    jim2011 Member Posts: 115
    #11
    small world
    Last Friday, while having lunch with my dad and a bunch of other relatives in New Brighton I overheard my sister (Sue E. & Kevin) talking about your husband and that they were intending on going to the memorial service at the VFW. I am so sorry for your loss and wish you and your family the best. This horrible cancer took the life of our mother 10 years ago and now I am fighting it inside of me as hard as possible. I will be one year from diagnosis this Saturday and plan to celebrate and raise a toast to those that have gone before.
    Jim
  • Gatoraid
    Gatoraid Member Posts: 66
    #12
    Thinking of You
    I've followed your blogs here about Greg's progress was very sad to hear that he has passed. I'm glad that the two of you had a long life together and I am sure that now Greg finds himself in a far better place and that you will join him there when your time comes.

    Please stay positive and remember the good times you had together.

    I wish you the best going forward.

    Jim

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