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Facing the End

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Viewing 8 posts - 1 through 8 (of 8 total)
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  • #20605
    DarlinGin
    Member

    Its been a long time since I last posted on these boards. This morning I’ve been searching for info/support on the web to answer the “What comes next?”

    My husband has been through all the currently available treatments …each has only left him worse off than when we started. Now the doctors have stopped everything and said it is time for him to do whatever is most important before he dies. Health wise I just want to know what we should be expecting at this point. The docs says he will probably die just by catching a cold. Between then and now, what will be happening?

    Can anyone out there share their own experiences?

    Virginia

    #20606
    SandyB
    Member

    Please know that there are a lot of good people here, who are praying for you and wishing you both peace and comfort.

    I have already gone down this road, and tell you that the most important thing for you both to do now, is share time, innermost thoughts, and know that you have done everything you can and now it is up to the Lord.

    Take each physical symptom that develops and do the best you can to deal with it. Everyone is different in this disease at every stage, so I don’t think anyone is going to be able to advise you on what will come next. Work with your Dr.s to keep comfort as your prime concern.

    Focus on sharing memories of all the good times you have had and the gratefullness to God that you were led to each other.

    Again, please know that you will be in the thoughts and prayers of all of us.

    Regards,
    Sandy

    #20607
    Birgit
    Member

    Virginia,
    Try to stay positive and most importantly reallistic. I agree with Sandy share time and live life to fullest with dignity. It can suck when tied to an IV for blood product 2-3 days out of every 7. Unfortunately with no immune system left, a simple pricked finger can lead to a lethal infection. So try to keep the environment clean, check for any breaks in skin and treat them vigorously with cleaning, and whatever ointments or antibiotics the docs prescribe. If you make sure he wears a mask in public and carry wipes like GermX to clean hands, car doorhandles and such. And if people come to visit have them wear a mask. The weather is getting better every day, smile lots and hold hands. I’ll pray for you too.
    Birgit

    #20608
    DarlinGin
    Member

    ROTFLOL Oh Brigit Only we could laugh about this. They way you described living is what we’ve had to do non stop since last October! Bill’s blood counts never recovered from chemo. I swear I should have bought stock in GermX/Purell because I’m making those companies rich. smile I’m a fiend about keeping the house germ free…especially since Bill is diabetic as well and 4 times a day must prick his finger and give himself shots. No breaks in the skin or pinpricks would go unnoticed. LOL Bill’s highest platelet count in the past 2 years was 57,000. Tiniest little thing and he bleeds everywhere. Not good in a home with all white carpets!

    Weather is weird here in Alaska today…14 inches of snow and its still snowing!

    Sandy – I guess that’s the hardest part for me. We and Bill’s doctor’s are not a team…never have been. She likes to just say “this is what we are doing…” and gets annoyed by questions or hesitations about following and does not like to explain anything. That works for Bill because he doesn’t want to know…it does NOT for me. I cope better when I have a grasp of what to expect. We’ve driven each other absolutely bats for seven years. I literally had to lose my temper and scream at her to even get her to allow quality of life issues to be part of the plan. She would NEVER be MY doctor.

    #20609
    Russ P.
    Member

    Dear Virginia,
    My heart goes out to you and your husband. I have AML after a bout with MDS and know that time is short. However it is my faith that keeps me positive knowing that because of God’s love through His Son, I will dwell in the house of the Lord forever. After reading many posts there is no doubt that each case is different but one constant is that this disease is very difficult for the caregivers. Knowing that I pray for you both that love will be foremost for family and friends. Blessings,
    Russ

    #20610
    Alice S
    Participant

    Dear Virginia
    Just returned after visiting my mother, had to sit with her and help her bath, had to watch as she struggled to eat a few forkfuls of food. It’s not easy, happened before, she bounced back, but every time she is smaller, weaker and more frail – she is only 64. A strong healthy woman, broken by this condition in a period of 3,5 years. I see my Dad and how he is suffering in silence. It’s not easy, but we live each day as it comes, some days are good others we’d rather forget. Somedays we caregivers feel we can conquer the world and the next we want to run and hide and return when it’s all over, but we can’t.
    Faith in whatever it is that we believe, God, Buddha it doesn’t matter but it helps. I know that althought Mom is not afraid of death, there are moments when fear grips her and she wishes it was all behind her, but another day dawns and we carry on. My only wish is that the time she has left is as problem free as possible with the end being peaceful and filled with love and family and no fear.
    Prayers, hugs to you all, Virginia next snowball you make do it for me, after living in Sweden for six years I miss the winter and beautiful crisp sparkling snow.
    Alice

    #20611
    Sandi1
    Member

    Hi,

    My father felt his doctors were giving up on him two months before he passed away and he said so.
    But we never gave up on him. He was moved to Calvary Hospital so that he could continue to recieve the care he required until his final day. Honestly, we were with him daily and took him out to the courtyard for dinner in his wheelchair. Insisted that he watch the news, monitored his intake of medications, massaged him when he needed it, and kept him engaged in conversation as we could. The last day we were together, we talked, fed him his last meal and kissed him good-bye as usual. The next morning, he passed. And we miss him dearly. So I say, take each day as a gift and live it as well as can be. I miss my dad dearly but know that he died in peace.

    God Bless.

    -Sandi

    #20612
    cherylm
    Member

    Hi,

    I’m with Sandi, don’t ever give in or give up on your husband. When my dad din’t have much left, we too spent evry minute with him. We shared our feelings for each other and reminiced about the family times we shared. We were always one of those strange familes who actually liked each other and enjoyed being together as often as we could. My dad died knowing how much he was loved and we know how much he loved us. Just savour each and every minute of every day and never let anything go unspoken. Prayers to you both.

    Cheryl Mirro

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