Advice please

kamts
kamts Member Posts: 3
edited March 2014 in Caregivers #1
It seems that time is moving too fast and in the wrong direction. But who can tell GOD what to do. I have been told to prepare for the end which is suppose to be somewhere in the coming 18 months timeline - and that is where I need advice. I am feeling well now and want to plan my exit well before I start losing control. Is there a service or council that will assign someone to help me all the way through the last minutes. What a relief it would be to know that my family can get some help along the way and not have to do the "heavy lifting".

But what a wonderful day today is.

many thanks

Greg

Comments

  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #2
    Hospice
    Hospice is there for both the patient and the family. Losing a loved one is never a good time, but they do help. You are a very thoughtful and generous person to think of those you will leave behind. I am sorry you are having to deal with this. Please remember that only God really knows when our time will come. Doctors can make educated guesses, but they don't really know. If you are feeling well enough now, enjoy the now. Make memories with your friends and family. I lost my husband to colon cancer after a six year battle. The thing that made that easier for me and our family was that he never stopped living until the very end. Even the day before he passed away he was joking with us. He held court from his bed. He slept a lot, but when he was awake he laughed and encourage us. He knew that he would be greatly missed, but he went out in style. I have many good memories that help me everyday. He told the pastor that he wanted gospel music and storytelling for his memorial service. He told me he wanted Daffy Duck (long story) on his grave stone. I don't know if he was kidding or not, but Daffy is set in stone now. I am not going to tell you that it was all laughter and fun. It wasn't; we cried together, too. There were days of pain and total fatigue. There was and is great grief. You can't get away from that. You can try to make each moment count. You can tell your family how much you love them and give them an opportunity to tell you how much they love you. You can still make memories with those you love. We all have expiration dates. You just happen to know that yours may be sooner rather than later. All we can do is the best we can. God will do His part. It is up to you to do yours. Take care, Fay
  • PattyNC
    PattyNC Member Posts: 65
    #3
    Let Hospice help
    Greg, I agree about hospice. Also, I agree that it is really in God's hands. Doctor's can't fully know his plan for you. My brother got head & neck cancer in 2006. The UPS man made a delivery right while I was talking on the phone long distance to the doctor and heard me ask about prognosis and stage, etc. He waited until I hung up and said, "just FYI -- my wife had cancer 12 years ago and they told her she had 6 months to a year so sometimes they miss the mark." I repeat his words, not to give false hope, but to emphasize that life is a gift and a mystery for all of us. You're in my prayers. God Bless.
  • kamts
    kamts Member Posts: 3
    #4
    grandmafay said:

    Hospice
    Hospice is there for both the patient and the family. Losing a loved one is never a good time, but they do help. You are a very thoughtful and generous person to think of those you will leave behind. I am sorry you are having to deal with this. Please remember that only God really knows when our time will come. Doctors can make educated guesses, but they don't really know. If you are feeling well enough now, enjoy the now. Make memories with your friends and family. I lost my husband to colon cancer after a six year battle. The thing that made that easier for me and our family was that he never stopped living until the very end. Even the day before he passed away he was joking with us. He held court from his bed. He slept a lot, but when he was awake he laughed and encourage us. He knew that he would be greatly missed, but he went out in style. I have many good memories that help me everyday. He told the pastor that he wanted gospel music and storytelling for his memorial service. He told me he wanted Daffy Duck (long story) on his grave stone. I don't know if he was kidding or not, but Daffy is set in stone now. I am not going to tell you that it was all laughter and fun. It wasn't; we cried together, too. There were days of pain and total fatigue. There was and is great grief. You can't get away from that. You can try to make each moment count. You can tell your family how much you love them and give them an opportunity to tell you how much they love you. You can still make memories with those you love. We all have expiration dates. You just happen to know that yours may be sooner rather than later. All we can do is the best we can. God will do His part. It is up to you to do yours. Take care, Fay

    Hospice
    Fay

    A wonderful reply - thanks

    We contacted hospice care here - they of course will help along the way. However - they said if I want help with planning and council this far in advance that I would need to secure that service myself.

    I have heard of a service where someone walks with you thru the letter writings - the planning - sort of another mind thinking things out and putting all of the "mess in a box". Not to mention the bedside "coaching" with things start to get scary.

    Wish I would have thought about this more - could have been a career move for me? Spent most of my life chasing bad guys and solving murders. Still good though.
  • kamts
    kamts Member Posts: 3
    #5
    PattyNC said:

    Let Hospice help
    Greg, I agree about hospice. Also, I agree that it is really in God's hands. Doctor's can't fully know his plan for you. My brother got head & neck cancer in 2006. The UPS man made a delivery right while I was talking on the phone long distance to the doctor and heard me ask about prognosis and stage, etc. He waited until I hung up and said, "just FYI -- my wife had cancer 12 years ago and they told her she had 6 months to a year so sometimes they miss the mark." I repeat his words, not to give false hope, but to emphasize that life is a gift and a mystery for all of us. You're in my prayers. God Bless.

    Let hospice help
    Thanks

    My mind is still working and it thinks I am still young. Rode a local rodeo a few weeks ago like I have done so many times before - only my body feels the difference.
    I guess we put up the good fight until we are too tired. I just don't want to "force the hand" so to speak and loose a large share of the remaining "quality of life". Watched my friend go into the hospital with a 50/50 chance - came out but with with the bad end of the 50%. Spent the remainder of time wishing he had not wasted those good months.
    But then you read about all of those who come out of the other side good as new.
    There I go thinking again. I have another cutting of hay I look forward to bringing in. Funny how I hated that chore for 30 years.
  • zinniemay
    zinniemay Member Posts: 522
    #6
    No answer
    I see coments on here all the time, but I have no answer, My husband is the one with cancer. I can see the worry you are going though and I know no amount of words will change that. 18 months is a lone time to plan. I don't know how they can just say that. What happens if it is 24 months? I think you could just tell the ones you love a little at a time what you would like done. I would decide to try to find what things you really need to do and do them. You can contact a funeral home and they will do pre planning. Or the use to do that.
    But 18 months I just keep thinking live . Who knows what will be. Paln what you feel you need to write it down. In some states a hand writen will is legal?
    I will try you that when my mother passed away (she had colon cancer). I did the planning I took care of it all. So She let me do this for her. I had a hard time but I did it. That was a proud thing for me. It showed me she had faith in me, it was not a heavy job. It was hard but I I did it. I promised her I would take care of her. and you know what I DID IT. So what I draw strenght from is that I could do this one last thing for my mom.
    I know this is not much help in your question, but I want you to know that trust the ones you love. Tell them what you need and want. Let them do these things for you.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
    kamts said:

    Hospice
    Fay

    A wonderful reply - thanks

    We contacted hospice care here - they of course will help along the way. However - they said if I want help with planning and council this far in advance that I would need to secure that service myself.

    I have heard of a service where someone walks with you thru the letter writings - the planning - sort of another mind thinking things out and putting all of the "mess in a box". Not to mention the bedside "coaching" with things start to get scary.

    Wish I would have thought about this more - could have been a career move for me? Spent most of my life chasing bad guys and solving murders. Still good though.

    Planning
    Life can sure throw us a few curves, huh? It sounds like you might have been in law enforcement. My husband started out as a police officer and then spent 30 years as a game warden. I remember when he was first dx I kept thinking, "This can't be right. We were suppose to grow old together." We did have a trust and an advanced directive. We made sure that they were in order. That gave us both some feeling of security. I know Doug's greatest concern was leaving me. I tried to assure him that I was a strong independent woman and that I would be alright. I am. I'm grieving, but I am ok. Your family will grieve, too. As I told my husband, if he had been an s o b it would be a lot easier. I wish I could offer you more help. Just take it one step at a time. You will find your way. Fay

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