Choosing Hospice

just4Brooks
just4Brooks Member Posts: 980 Member
edited March 2014 in Colorectal Cancer #1
As some of you know I wave worked hospice for many years and even owned one. I'm hearing many telling people not to give up the fight. Dont give up hope. This is what I have told many people over the years to help them to understand what hospice is.

People who choose hospice are not giving up hope, they are in fact redefining it. Though there may no longer be a possibility of curing their illness, they redirect their hope into mending and restoring relationships, spending quality time with those they love, and finding peace and comfort.

Choosing hospice doesn't mean choosing death, it means choosing to live life to the fullest. Usually once someone has chosen hospice, they have been through a lot already. Multiple hospital admissions, chemotherapy and radiation, and invasive tests and treatments can leave patients feeling sick and tired. By choosing hospice, they have decided to focus on the quality of their lives rather than on the quantity.

I've seen many people who have chosen hospice use their time, once consumed by doctors appointments and hospital stays, to take family vacations, travel to places they've always wanted to see, and enjoy the company of loved ones at home. These aren't people who have given up hope or given up on life. These are people who are living life to the fullest.


Brooks
«13

Comments

  • KFen725
    KFen725 Member Posts: 108 Member
    Thank you for posting this!
    Brooks,

    I 100% agree with you. My mom was in hospice's wonderful care at the end of her life (dx Stage IV CC June '09 and died March '10) and contrary to us feeling depressed when we brought in hospice, it was a HUGE relief and tremendous stress off of everyone's shoulders knowing that suddenly we had 24/7 immediate access to a wonderful team of nurses & doctors who could take care of any comfort need.

    Instead of taking mom to the ER, Dr's office or hospital for every new symptom that came up, we could get immediate assistance from hospice to make sure mom felt secure and comfortable. If anything, I wish we would have brought in hospice earlier, because she actually ended up only being under their watch for 12 days before dying.

    Anyway, I agree - hospice is not "giving up". It is focusing on ENJOYING the rest of your time on earth instead of traipsing around in discomfort from Dr to Dr and hospital to hospital. There is something to be said for just being in your own home with your family and your own blankets and pillows. I cherish that we were able to have mom in her own home until she passed.

    Thanks,
    Kelly
  • taraHK
    taraHK Member Posts: 1,952 Member
    Appreciation
    I really appreciate this message - thank you. There is a lot of talk on our board about "don't give up the fight". And I am sympathetic to that (I may have even participated! I certainly like thinking of myself as a dragon warrior, etc.). But I think it is important for us to value and appreciate all of the decisions which our 'brothers and sisters' make -- and to recognize that "there is a time for everything". I really like your portrayal of hospice as having the possibility of being a positive thing -- not to be perceived as a 'failure' or a lack of any other option.

    I've actually been wanting to raise this general topic for some time and I am glad you did so.

    Tara
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Hospice
    Thanks Brooks and it is so timely. After a very bad weekend ( *things* ALWAYS happen on the weekends! ) my Mom will be asking to be placed on hospice care today.

    My Dad has been on Hospice care for 2 years and it has been wonderful to have him at home rather than a nursing home.He is actually thriving. He looks better today than he did 2 yrs ago when they gave him only a few weeks to live.

    Much thanks and blessings to all hospice workers.

    -Pat
  • Aud
    Aud Member Posts: 479 Member
    thank you
    thank you, Brooks, for posting this.
    Audrey
  • taraHK said:

    Appreciation
    I really appreciate this message - thank you. There is a lot of talk on our board about "don't give up the fight". And I am sympathetic to that (I may have even participated! I certainly like thinking of myself as a dragon warrior, etc.). But I think it is important for us to value and appreciate all of the decisions which our 'brothers and sisters' make -- and to recognize that "there is a time for everything". I really like your portrayal of hospice as having the possibility of being a positive thing -- not to be perceived as a 'failure' or a lack of any other option.

    I've actually been wanting to raise this general topic for some time and I am glad you did so.

    Tara

    This comment has been removed by the Moderator
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Thanks
    Thanks for posting this. My mom was under hospice care for a while before her death and know that they were so good for her and my dad. Glad you explained it.

    Kim
  • John23
    John23 Member Posts: 2,122 Member
    Hospice ?


    Let me understand this.....

    When Western Medicine finally tells me that there's nothing more
    -they- can do; nothing more -they- can offer me to save me from dying,
    I should choose to die as quietly and nicely as possible, rather than
    turn to some other way....any other way.... to fight the cancer?

    I should forget trying -any- alternative, just toss in the towel and make
    my family and friends happy - happy to be able to see me happy and
    care-free until the day I die?

    I simply cannot accept that concept.

    The "Hospice Care" consists of anti-depressants and pain-killers.

    I have had family and friends in Hospice. They seemed so content
    that death was going to be so comforting. They refused to consider
    any attempt to remain alive, and instead they actually welcomed death.

    I was no longer talking to those I knew for years, I was talking to drugged
    versions of those that were once human and alive, and who once had such
    a strong will to live, that nothing would stop them.... all gone.

    They were gone long before their death. And I'm not too sure they
    would have been so complacent, had it not been for the amount
    of drugs administered to "help them cope" with their "condition".

    Listen.......

    Make certain there is -absolutely- no hope left, before committing
    to death's door; There are always option that haven't been tried,
    and death should be the very, very last option, because there
    are no more options after that.

    We weren't born to quit.

    Just as that blade of grass can grow between the cracks of a very
    busy highway, we were given the power to live. We were given the
    ability to use our common sense and intuition to discern right from
    wrong, all to help us survive.

    Instead, so many forego that inner ability, and put all their trust
    into other's opinions, including the timing of their death. Why?

    The will to survive should not be quelled by drugs or physicians,
    it should not be dimmed......... ever.


    John.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Personal Choice
    People should be allowed to chose what they want to do, especially in times of ill health. I agree with you, choosing hospice is not choosing death, it's more about how one wants to live THEIR life. It's no one else's business. It has nothing to do with the form of treatment one may or may not have received prior to their choice of seeking hospice care.
    Thanks for posting this Brooks
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    John23 said:

    Hospice ?


    Let me understand this.....

    When Western Medicine finally tells me that there's nothing more
    -they- can do; nothing more -they- can offer me to save me from dying,
    I should choose to die as quietly and nicely as possible, rather than
    turn to some other way....any other way.... to fight the cancer?

    I should forget trying -any- alternative, just toss in the towel and make
    my family and friends happy - happy to be able to see me happy and
    care-free until the day I die?

    I simply cannot accept that concept.

    The "Hospice Care" consists of anti-depressants and pain-killers.

    I have had family and friends in Hospice. They seemed so content
    that death was going to be so comforting. They refused to consider
    any attempt to remain alive, and instead they actually welcomed death.

    I was no longer talking to those I knew for years, I was talking to drugged
    versions of those that were once human and alive, and who once had such
    a strong will to live, that nothing would stop them.... all gone.

    They were gone long before their death. And I'm not too sure they
    would have been so complacent, had it not been for the amount
    of drugs administered to "help them cope" with their "condition".

    Listen.......

    Make certain there is -absolutely- no hope left, before committing
    to death's door; There are always option that haven't been tried,
    and death should be the very, very last option, because there
    are no more options after that.

    We weren't born to quit.

    Just as that blade of grass can grow between the cracks of a very
    busy highway, we were given the power to live. We were given the
    ability to use our common sense and intuition to discern right from
    wrong, all to help us survive.

    Instead, so many forego that inner ability, and put all their trust
    into other's opinions, including the timing of their death. Why?

    The will to survive should not be quelled by drugs or physicians,
    it should not be dimmed......... ever.


    John.

    John, that really stung
    Hey John, I actually agree with you a lot of the time but this time you hit a sore spot and it hurt. So I'm yelling "Ouch". You said <"The "Hospice Care" consists of anti-depressants and pain-killers."> and that is just not always the case.Hospice is designed for quality, at home care for those who are very ill.Take my 82 yr old Dad for instance. He has had 5 Cerebral Amyloid Angiopathy Strokes, has been on Hospice 2 years, and is living at home clean, happy, and content as he ever could be anywhere else. He takes Synthroid, Nexium, & Colace daily. NO antidepressants OR pain killers.

    Now, my Mom is getting ready to go on Hospice Care. She is 81 yrs old, has advanced, aggressive lung, throat, & bone cancer and it is possibly in her brain now. She weighs 100 lbs and is not a candidate for any healing treatment ( Western or otherwise ). Dam John, she is too frail to even get her into the car to take her out hunting any other alternative.Please PM me if you have a better solution.

    And, your concept of how Hospice works is a little off, IMO. I worked with Hospice patients for 2 years and what you wrote just does NOT ring a bell with what I witnessed.

    Ok...I said my "OUCH". I don't like being presented as someone who just wants to dope up my loved ones and make them go to la-la land until they die.I want my parents to live...yes I do...and I am making sure that each and every day that they do live is comfortable and happy days for them.

    -Pat
  • John23
    John23 Member Posts: 2,122 Member
    Jaylo969 said:

    John, that really stung
    Hey John, I actually agree with you a lot of the time but this time you hit a sore spot and it hurt. So I'm yelling "Ouch". You said <"The "Hospice Care" consists of anti-depressants and pain-killers."> and that is just not always the case.Hospice is designed for quality, at home care for those who are very ill.Take my 82 yr old Dad for instance. He has had 5 Cerebral Amyloid Angiopathy Strokes, has been on Hospice 2 years, and is living at home clean, happy, and content as he ever could be anywhere else. He takes Synthroid, Nexium, & Colace daily. NO antidepressants OR pain killers.

    Now, my Mom is getting ready to go on Hospice Care. She is 81 yrs old, has advanced, aggressive lung, throat, & bone cancer and it is possibly in her brain now. She weighs 100 lbs and is not a candidate for any healing treatment ( Western or otherwise ). Dam John, she is too frail to even get her into the car to take her out hunting any other alternative.Please PM me if you have a better solution.

    And, your concept of how Hospice works is a little off, IMO. I worked with Hospice patients for 2 years and what you wrote just does NOT ring a bell with what I witnessed.

    Ok...I said my "OUCH". I don't like being presented as someone who just wants to dope up my loved ones and make them go to la-la land until they die.I want my parents to live...yes I do...and I am making sure that each and every day that they do live is comfortable and happy days for them.

    -Pat

    A touchy subject.


    Pat - (and others)

    I am truly sorry if I struck a raw nerve; it's not easy to convey
    a thought without managing to step on a toe.... Mea Culpa..

    But..... What both you and Phil are suggesting I implied, I did -not- say.

    What I -did- say, was this:

    "Make certain there is -absolutely- no hope left, before committing
    to death's door; There are always options that haven't been tried,
    and death should be the very, very last option, because there
    are no more options after that."


    There is a difference between hospice and home care, and
    "palliative care".

    Hospice is designed to make getting to the end of life as easy
    and pleasant as possible. Not just for the patient, but for the
    family and friends. They provide the needed anti-depressants
    and pain killers to eliminate the suffering that accompanies
    the dying process.

    I've had too, too many family and friends die in hospice, so
    it's a major BTDT for me. I set up telephone service in quite a
    few hospice facilities for dying patients, so I'm not unfamiliar
    with their operation, or practices.

    It's a needed service for those that absolutely need it, but my
    comment is aimed at those that might think they need it, but haven't
    explored any other possible remedy.

    I recently lost a friend in that manner. He insisted on using a local herbalist,
    and when the herbs failed.... rather than try chemo or radiation, he signed
    himself into hospice. He's gone; he went fast and he didn't care.

    I had spoken with him, and gave him print-outs of items from this forum
    that discussed the various new techniques available to get to the cancer
    he had. But within two weeks of hospice care, he was joking, laughing,
    and didn't want to have anything to do with trying anything else. It wasn't
    "him" anymore, that I talked to..... it was some very relaxed individual
    that was treating death as a planned vacation...

    That is what the drugs do; That is what hospice is intended to do:
    Make dying less horrific. That's reality, not an insult.

    And I should address Phil's comment:

    Re:
    "It has nothing to do with the form of treatment one may or may
    not have received prior to their choice of seeking hospice care."


    I don't know where you got that, Phil... I'm not trying to sell or market
    an alternative, I'm trying to get people to stay alive.

    It has all to do with knowing when to let go of failing treatments, regardless
    if that is TCM, chemo, juicing, etc... and when to try something different.

    Hospice does not attempt to save one from death, it helps one get
    to death's door in comfort. One should make -absolutely sure- they
    truly want to die, prior to signing into hospice. The medications
    used can lull one into a complacent state, losing all desire to continue
    living, and desiring instead, the perception of peace and comfort
    that death will bring.

    I don't know about anyone else, but I am going to do whatever I have to
    do; try any damned thing out there, and if it still all fails, they're going to have
    to take me kicking and screaming all the way to the crematorium.

    I hate cancer. I hate losing friends; ones that I can see, and all the ones
    here in cyberspace. I hate the overwhelming fear of dying that consumes
    one's ability to focus on their instincts and intuition that tells them to
    try something different; to continue to fight to stay alive.

    There's no way to "sugar-coat" hospice. It's not a Theme Park excursion,
    it is the final road out of this world.

    I want to see people living, and trying to live, in spite of cancer, and in
    spite of any disease. Hospice isn't the "end of the chapter", it's "the end".


    Damn it. I hate this. I hate cancer.


    John
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    John23 said:

    A touchy subject.


    Pat - (and others)

    I am truly sorry if I struck a raw nerve; it's not easy to convey
    a thought without managing to step on a toe.... Mea Culpa..

    But..... What both you and Phil are suggesting I implied, I did -not- say.

    What I -did- say, was this:

    "Make certain there is -absolutely- no hope left, before committing
    to death's door; There are always options that haven't been tried,
    and death should be the very, very last option, because there
    are no more options after that."


    There is a difference between hospice and home care, and
    "palliative care".

    Hospice is designed to make getting to the end of life as easy
    and pleasant as possible. Not just for the patient, but for the
    family and friends. They provide the needed anti-depressants
    and pain killers to eliminate the suffering that accompanies
    the dying process.

    I've had too, too many family and friends die in hospice, so
    it's a major BTDT for me. I set up telephone service in quite a
    few hospice facilities for dying patients, so I'm not unfamiliar
    with their operation, or practices.

    It's a needed service for those that absolutely need it, but my
    comment is aimed at those that might think they need it, but haven't
    explored any other possible remedy.

    I recently lost a friend in that manner. He insisted on using a local herbalist,
    and when the herbs failed.... rather than try chemo or radiation, he signed
    himself into hospice. He's gone; he went fast and he didn't care.

    I had spoken with him, and gave him print-outs of items from this forum
    that discussed the various new techniques available to get to the cancer
    he had. But within two weeks of hospice care, he was joking, laughing,
    and didn't want to have anything to do with trying anything else. It wasn't
    "him" anymore, that I talked to..... it was some very relaxed individual
    that was treating death as a planned vacation...

    That is what the drugs do; That is what hospice is intended to do:
    Make dying less horrific. That's reality, not an insult.

    And I should address Phil's comment:

    Re:
    "It has nothing to do with the form of treatment one may or may
    not have received prior to their choice of seeking hospice care."


    I don't know where you got that, Phil... I'm not trying to sell or market
    an alternative, I'm trying to get people to stay alive.

    It has all to do with knowing when to let go of failing treatments, regardless
    if that is TCM, chemo, juicing, etc... and when to try something different.

    Hospice does not attempt to save one from death, it helps one get
    to death's door in comfort. One should make -absolutely sure- they
    truly want to die, prior to signing into hospice. The medications
    used can lull one into a complacent state, losing all desire to continue
    living, and desiring instead, the perception of peace and comfort
    that death will bring.

    I don't know about anyone else, but I am going to do whatever I have to
    do; try any damned thing out there, and if it still all fails, they're going to have
    to take me kicking and screaming all the way to the crematorium.

    I hate cancer. I hate losing friends; ones that I can see, and all the ones
    here in cyberspace. I hate the overwhelming fear of dying that consumes
    one's ability to focus on their instincts and intuition that tells them to
    try something different; to continue to fight to stay alive.

    There's no way to "sugar-coat" hospice. It's not a Theme Park excursion,
    it is the final road out of this world.

    I want to see people living, and trying to live, in spite of cancer, and in
    spite of any disease. Hospice isn't the "end of the chapter", it's "the end".


    Damn it. I hate this. I hate cancer.


    John

    A Way With Words
    You certainly have it John...
    -phil
    Dying is the hardest on those it leaves behind.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Thanks.
    Brooks,

    I appreciate your comments. Very thoughtful and very well said. Thank you! I think a lot of people here needed to read that right now.

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    John23 said:

    Hospice ?


    Let me understand this.....

    When Western Medicine finally tells me that there's nothing more
    -they- can do; nothing more -they- can offer me to save me from dying,
    I should choose to die as quietly and nicely as possible, rather than
    turn to some other way....any other way.... to fight the cancer?

    I should forget trying -any- alternative, just toss in the towel and make
    my family and friends happy - happy to be able to see me happy and
    care-free until the day I die?

    I simply cannot accept that concept.

    The "Hospice Care" consists of anti-depressants and pain-killers.

    I have had family and friends in Hospice. They seemed so content
    that death was going to be so comforting. They refused to consider
    any attempt to remain alive, and instead they actually welcomed death.

    I was no longer talking to those I knew for years, I was talking to drugged
    versions of those that were once human and alive, and who once had such
    a strong will to live, that nothing would stop them.... all gone.

    They were gone long before their death. And I'm not too sure they
    would have been so complacent, had it not been for the amount
    of drugs administered to "help them cope" with their "condition".

    Listen.......

    Make certain there is -absolutely- no hope left, before committing
    to death's door; There are always option that haven't been tried,
    and death should be the very, very last option, because there
    are no more options after that.

    We weren't born to quit.

    Just as that blade of grass can grow between the cracks of a very
    busy highway, we were given the power to live. We were given the
    ability to use our common sense and intuition to discern right from
    wrong, all to help us survive.

    Instead, so many forego that inner ability, and put all their trust
    into other's opinions, including the timing of their death. Why?

    The will to survive should not be quelled by drugs or physicians,
    it should not be dimmed......... ever.


    John.

    Hmm...
    John,

    I have read many of your posts here,and I get the impression that you sort of cherish the position of being a devil's advocate. How about lightening up a bit and giving support to our "family" here?

    *hugs*
    Gail
  • John23
    John23 Member Posts: 2,122 Member
    tootsie1 said:

    Hmm...
    John,

    I have read many of your posts here,and I get the impression that you sort of cherish the position of being a devil's advocate. How about lightening up a bit and giving support to our "family" here?

    *hugs*
    Gail

    Gail -


    Not a "devil's advocate" - more of a Don Quixote.


    A good friend once introduced me, saying:

    "You know how some people will tell you the glass is half
    empty, while others will tell you the glass is half full?

    John will tell you the water's polluted."




    (a few hugs back, Gail)


    John
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    John23 said:

    Gail -


    Not a "devil's advocate" - more of a Don Quixote.


    A good friend once introduced me, saying:

    "You know how some people will tell you the glass is half
    empty, while others will tell you the glass is half full?

    John will tell you the water's polluted."




    (a few hugs back, Gail)


    John

    Thanks
    Thanks for the hugs, John. I really wasn't trying to make you mad. I was hoping to gently remind you that there are some pretty raw feelings going around here lately, and we just all need to close in tight for a group hug and tell the beast to go away.

    *hugs*
    Gail
  • Nana b
    Nana b Member Posts: 3,030 Member
    tootsie1 said:

    Thanks.
    Brooks,

    I appreciate your comments. Very thoughtful and very well said. Thank you! I think a lot of people here needed to read that right now.

    *hugs*
    Gail

    hello
    The only hospice I have been in contact with is my sister in law's Moms condidtion. In hospice, most of the time she was out of it, and the daughters took turns laying next to her, she died several weeks later. It was in a hospice home. Very nice home.

    My grand mother had hospice called by her daughter a couple years ago....and they came to her home, she proceeded to tell them to get the hell out of her home and she is now 100 years old and 1 month and 16 days old. I think all those smoothies are keeping her alive because other then a little arthritis, there is nothing wrong with her. Her memory is better then mine.

    If I got to the point that I was a burden to my family, I would take hospice, but my family would never put there. I already know it and have mixed reactions. I don't want to be a burden to anyone!

    Hmmmmmmm.....The choice is yours, but don't give up! :-)
  • Left Coaster
    Left Coaster Member Posts: 25
    Nana b said:

    hello
    The only hospice I have been in contact with is my sister in law's Moms condidtion. In hospice, most of the time she was out of it, and the daughters took turns laying next to her, she died several weeks later. It was in a hospice home. Very nice home.

    My grand mother had hospice called by her daughter a couple years ago....and they came to her home, she proceeded to tell them to get the hell out of her home and she is now 100 years old and 1 month and 16 days old. I think all those smoothies are keeping her alive because other then a little arthritis, there is nothing wrong with her. Her memory is better then mine.

    If I got to the point that I was a burden to my family, I would take hospice, but my family would never put there. I already know it and have mixed reactions. I don't want to be a burden to anyone!

    Hmmmmmmm.....The choice is yours, but don't give up! :-)

    Telling the truth and asking questions
    It seems individuals here take it personally when a person tells the truth from their point of view. Life and death, Cancer, treating disease and the choices we make are emotional situations. It bothers me that when individuals go out of their way to explain their point of view they are attacked for it. Rather then attacking that person, why not look for clarification as to what they mean by a particular statement? This is a discussion forum which includes asking questions and done with respect for all, a greater understanding can be achieved.

    I, myself have witnessed firsthand a cancer patient who, according to the Dr's responsible for her care, there was no point to tradition treatment. She died at home with her family by her side (under hospice care)and I will not put my family through that situation. She stopped breathing due to the heavy drugs she was given to minimize her pain.

    It's ironic that when I went to the ER for my brain tumor after a seizure, the ER doctor said there is no chance and that I should live a happy life. Well I am back after brain surgery, gamma knife and another round of systemic chemo. Now I will get the bone mets treated and go from there.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member

    Telling the truth and asking questions
    It seems individuals here take it personally when a person tells the truth from their point of view. Life and death, Cancer, treating disease and the choices we make are emotional situations. It bothers me that when individuals go out of their way to explain their point of view they are attacked for it. Rather then attacking that person, why not look for clarification as to what they mean by a particular statement? This is a discussion forum which includes asking questions and done with respect for all, a greater understanding can be achieved.

    I, myself have witnessed firsthand a cancer patient who, according to the Dr's responsible for her care, there was no point to tradition treatment. She died at home with her family by her side (under hospice care)and I will not put my family through that situation. She stopped breathing due to the heavy drugs she was given to minimize her pain.

    It's ironic that when I went to the ER for my brain tumor after a seizure, the ER doctor said there is no chance and that I should live a happy life. Well I am back after brain surgery, gamma knife and another round of systemic chemo. Now I will get the bone mets treated and go from there.

    Nice to meet you
    I have no idea if you were referring to me or not. I don't believe I attacked John. Just gave him a gentle reminder.

    I'm glad you are defying the doctor's prediction that nothing could be done.

    *hugs*
    Gail
  • Patteee
    Patteee Member Posts: 945
    thank you for this post
    thank you for this post Brooks.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Patteee said:

    thank you for this post
    thank you for this post Brooks.

    :o)
    You welcome... Sorry to ruffel so many people. LOL