Conference quark::human_relations-v1

    
    Steve,
    
    I feel for you and your wife in the face of this difficult and painful
    time.
    
    I haven't been through anything like this, but just a few thoughts.....
    
    Do you feel that the real issue here could possibly be how long
    to prolong his life, rather than how?
    
    Is it possible that, by repeatedly pulling out the tube, your father in law
    is consciously indicating that he feels ready to let go now?
                                       
    If you feel that either of thoughts could be valid then maybe there's
    a fresh perspective there....
    
    Supportive thoughts to you both,
    
    'gail
    

    Steve, my first thought was the same as one of 'gail's - perhaps Pat's
    father is expressing his choice in the matter through one of the few
    willful actions left to him.  Is he lucid enough to respond if
    questioned?
    
    I've considered the potential for a situation similar to this for myself, 
    though not for any of my family members. (I believe in making these 
    decisions for oneself, if possible, while still capable of making the 
    decision and communicating it to the necessary parties.)  For myself, in 
    the situation described, I'd do what Pat's father is doing.  For me that 
    would be the kindest and most loving solution.
    
    If it's of any comfort at a time like this, please know that I
    empathize with all of you as you face these difficult decisions.  May
    you all find peace in the outcome.
    
    Regards,
    Karen
                                        

    
    Your description of your Father-in-law's daily condition speaks to the
    issue fairly eloquently, I would think.
    
    The "quality" of his existance is ranking in the minus readings at this
    point, and if he can be made not to suffer terribly while he starves to
    death, wouldn't that end this indignity?
    
    I think all of us harbour deep fears about becoming inanimate,
    unthinking, unfeeling clumps of protoplasm...I would think he would be
    eternally grateful if his children would allow him to die. He would
    wish that they would have memories of the years when he was a vibrant
    and viable part of their lives; not ones of him in his decrepitude.
    
    However, I think that is the easy part of the decision.
    
    His children must live with it afterwards. There will be guilt and
    anger and remorse...regardless of how thorough they are about preparing
    themselves for the action before. They will need help working through
    the days and weeks that follow his death, if they choose to let him
    die. Probably more help than their families can give them.
    
    You all have my deepest sympathy. God help you.
    
    Mel

    Steve -
    
    I am sitting here close to tears, because of memories which this
    brings.  This won't be easy for any of you.  I had to stand by and
    watch as we 'let my mother go'.  It was what she wanted and she
    went in peace, but it is never easy.  Sometimes, however, it is
    what is right.  Each of us will someday reach a point when it
    is time to leave 'here' and go 'there', and it sounds like your
    father-in-law is at that point.   The best we can do is make the
    journey as easy as possible.
    
    May all involved find peace.
    
    Alison

My grandmother is going through this stage of Alzheimer's right now.  What is
so intensely frustrating is that there's nothing you can really do except see
your loved one die mentally while stay alive physically.  I have no answers.

				Steve

    My thoughts and prayers are with you and Pat.  I have gone through a
    similar situation with my mother.  I have no answers but my heart goes
    out to you ....
    
    Hugs,
    
    -Dotti.

Steve,
	I have not gone through this with my parents, but have with a friend. 
She is a nurse, and thus aware of the circumstances that exist for all those
hours when the patient is alone, both because family is not there, and because
nurses today don't have the time to administer care to patients due to mandates
for volumetric documentation.  An excerpt of your comments:

>                                      He spends most of his time curled 
>    up in a fetal position in his bed, and does not communicate at all.
     
>          (1) The doctor can install a more permanent feeding tube, that
>   goes into the stomach through the chest wall.  

>                Therefore if this option were used, Pat's dad would have
>    to be restrained all the time; that is, virtually tied to his bed with
>    his hands strapped so he can't get to the feeding tube.  He would
>    remain like this until some infection set in and caused his death.  (2)


	I would ask you to consider a few thoughts, 

   1) What suffering would any particular procedure truly relieve?
   2) Would that procedure only postpone the same suffering?  For how long?
   3) What quality of life would be restored by that procedure?
   4) What would you be able to do for that person, or what would that person 
      be able to do for you because you postpone an inevitable situation?
   5) Are the procedures heroic?  Is it the patient who feels the most relief 
      from having the procedure performed?
   6) How long can a feeding tube reasonably be kept in before an opportunistic
      infection sets in?  Will the pain from the procedure out-weight the
      benefits, or create new problems?
   6) Are there alternatives, such as keeping the patient comfortable (out of
      pain) through the terminal stage.
   7) Think seriously about the comment in .1; is the patient trying to 
      communicate (either consciously or subconsciously) in the only way he 
      can that it is time to let go.

>    What did you decide?
    
	My friend made a very difficult decision, and never regretted it.  The
doctor followed her wishes and kept her mother comfortable for the duration.
    
	Only you can decide what to do in your situation, so weigh the issue
    carefully, and be peaceful with your decision.

Eric
    

    
    	All I can say is that my thoughts and prayers are with you
    	and your family during this most difficult time. 
    
    							Hank

    Steve,
    
    I give you my deepest sympathy because this has to be one of the
    toughest decisions.  My opinion is to just let him rest in peace, I
    know it is a hard decision but it is the more humane one.  If I was in
    his state, that would be my choice. I think by him pulling the tube out
    in a round about way, that is what he is saying, to let him go.
    
    Good luck
    
    Lynne

    My thoughts are with you.  My father was in a nursing home for the last
    year and a half of his life.  The last three months were the hardest
    thing I've ever lived through.  He didn't have Alzhiemers....just bad a
    bad heart, lungs and kidneys compounded by a stroke a number of years
    previously.  But for the last few months of his life he deteriorated
    rapidly and would be on the respirator and IVs until that bout of
    whatever cleared and waited 'til it happened again.  It got to the
    point that we realized it was quality of life rather than quantity and
    the family talked with the doctors and made the decision not to put him
    on anymore machines just do everything possible to keep him
    comfortable.  I believe he had given up.  He had his mind and his sense
    of humor until the very end.  He stopped eating about two weeks
    previous to his death.  He would drink liquids and maybe take a
    spoonful of mashed potatoes every-now-and-again.  The doctors and
    family were amazed he lasted as long as he did.  We believe he was
    waiting to see his younger brother who was due to visit from
    California.  He made it....and passed away in his sleep that night.
    
    This decision will be the hardest thing you and your family will have
    to do and the emotions will run high and be difficult to endure
    sometimes.  I think Pat's father is, in his own way, telling you how he
    feels by pulling out the tube.....maybe not. I've never experienced
    knowing someone with Alzheimers.  Whatever your decision it will be
    what you felt was best and peace will come with it.
    
    P.
    

    Steve,
    
    God, I feel for you.  This is such an awful decision to have to make.
    I have experience on both sides of it. Neither situation is pretty, but
    maybe something here will help. 
    
    My mother-in-law (age approx.87) been senile for about 10 years now; 
    out of contact with anyone or anything around her, nonresponsive, etc.  
    My husband's family family (he and five six sisters) chose to maintain
    her on tube feedings.  She has a "permanent" tube installed, and is
    restrained in bed most of the time.  Her heart is strong. She may live
    another 10 years like this -  we have no idea how long she will live, but 
    I gotta tell you, there's no "person" left in that body. Apparently in 
    Mass., once started, it's very hard to discontinue tube feedings. So
    we've been waiting 10 years so far, and we're still waiting for her to die. 
    
    My sister-in-law, age 54, went into a coma last fall following a
    massive stroke.  The neurologist gave her less than 5% chance of ever 
    regaining *any* functioning of any sort.  Her sons chose not to have her 
    tube-fed.  It took her 10 days to die.
    
    I hate both situations.  My sister-in-law at least died quickly.
    
    My best wishes are with you and your wife in coping with this.
    
    Lynn

    We went through something similar with my uncle when he died of cancer
    two years ago. One thing you need to be prepared for, people who have
    NO BUSINESS in this decision may try to fight you. The nursing home my
    uncle was in kept disregarding both his decision and the family's that
    he not be fed any longer. My aunt,my brother and the doctor all had to
    fight with them.

    Something you may want to do is read Elizabeth Kulber Ross's book on
    "Death and Dying". We spent a semester studying this book when I was
    traning in cancer therapy. It helps give perspective. I wish you luck
    and peace with your decision. liesl

    Steve,
    
    Please call me at DTN 544-3179, or send mail so we can talk about
    this.  My mother died about two months ago of Alzheimer's.  It was the 
    kindest thing that happened to her.
                       
    Warmest Support,
    Barb

    I can relate to what you are going through. My father was in a nursing
    home for nine months after he had gone into respiratory failure caused
    by emphazima, my mother could no longer care for him at home. He
    refused to eat anything at all. We tried everything, from bringing food
    from home, his favorite meals. Junk food you name it. He wouldn't touch
    it. His doctor had him drinking a special drink made up of vitamins and
    other nutrients. He would only drink fluids. I thought that the nursing
    home staff would help him if the problem was his lack of coordination.
    But even with someone helping him he would refuse to open his mouth. I
    had been doing alot of reading on elderly and nursing homes and
    discoverd that this happens alot because of depression or the
    medication that some patients are on. But after going to a nursing home
    every single day and watching everything that goes on. I think that
    they are not really living with dignity and there is no will to live.
    
    What ever you decide to do, will be hard on your wife and her family.
    My personal opinion is that a feeding tube would just prolong his
    suffering and the families. It's so hard to watch someone you love
    suffer when you know the end is near. To prolong this suffering is
    cruel inhumane.

    Well, I've considered the possibility that her father might be trying
    to tell us something.  The last time we saw him, he was really locked
    into another world -- we weren't able to communicate with him at all
    (as far as we could tell) and he's gone a long way downhill since then.
    
    Thank you for your thoughts and kind wishes.
    
    Steve

    Steve,
    
    I cannot add anything but my heartfelt sympathy to you, your wife
    and her family.
    
    May you all find comfort and peace whatever the decision.
    
    With a hug,
    		Bob

    
    
    	Steve,
    
    	I am very sorry to hear that you and your wife are faced
    	with this (you are correct IMPOSSIBLE) decision.  Let me
    	tell you about my father. He died a couple of years ago
    	after going a full 2 year bout with brain cancer. I went
    	through an awful lot of stuff during that time as did he.
    	Fortunately, he had the time between the diagnosis and
    	the time he became fully incapacitated to make the decisions
    	himself. He in fact, made the decision NOT to go through the
    	life support route. I was with him frequently, even when he
    	didn't respond anymore. I was with him when the end came.
        *For us*, this was the right thing. I have done the same
    	thing so my children will not have to go through the pain
    	of this decision.  I am *NOT* suggesting that you need to
    	do this. I just wanted to let you know how we handled it.
    	But we were luckier I guess. We had some warning.  
    	Wishing you all the strength you need to do what you feel
    	is right. Just remember, the more you love someone, the
    	harder you will try for them to do 'what is right'. I am
    	sure that you will do the best you can. Whatever you decide,
    	here's wishing all of you Peace.
               					kim
   

    Steve.......
    
    This is a terribly hard decision for anyone to have to make, but I want
    to ask you a question?  When your father-in-law was mentally sound, did
    he ever express an opinion about how he would feel if he were to
    "linger" in a debilitating situation, as he is in now......
    
    My question comes from my experience.  My husband, John, died a bit
    over 2 1/2 years ago from a malignant brain tumor....  While he was
    alive, and certainly before his illness, he had always told me that if
    he were ever to become a burden or a "nothing" (as he called it) he
    would never want his life prolonged by any means......  At the time we
    had both agreed over the years to give the gift of release to each
    other if the time ever came.
    
    His tumor caused him to become, basically, what he never wanted to be.
    When his mental abilities began to flounder, and they had him on
    feeding apparatus, he would rouse himself from a semi-comatose state to
    pull out IVs or any other means of nourishing him......He was trying to
    put an end to his own life........But, they wouldn't let him......Our
    family decision was to withhold medications, nourishment and anything
    else that would prolong his pain and anguish.......Not easy to live
    with, but it was the right decision.......The last day I saw him alive,
    he had about 3 lucid moments, in which he knew me, told me how much he
    loved me, and thanked me for "letting him go".  I didn't know those
    would be his last words to me, but he died very quietly and as serenely
    as he could considering his condition......... I have not had a moment
    of trouble living with the decision.......Agreed, it was a total
    family decision, but I was ultimately the one who had to "do the dirty
    work" and voice the decision.
    
    I don't know if this will help or not, but I hope so.  My prayers will
    be with you and Pat through this time........God will give you the
    strength and wisdom to know your father-in-law well enough to make the
    right decision.  
    
    God Bless You.......
    
    Barb 

    I have been a nurses aide in an infirmary for elderly nuns.  I have 
    observed a Alzheimer patient in the last stages of life (with a feeding 
    tube) and we have two nuns that are in the first stages of the disease.
    
    It is a hard decision, a decision necessary because there are options 
    that are available that are useful in some situations and become an
    albatross in others.
    
    But working with these patients has convinced me that there are two 
    deaths, that of the soul and/or the mind and that of the body.  Some 
    are fortunate enough to have these deaths occur simultaneously.  But
    more and more bodies are outliving souls and the havoc modern medicine
    has created is taking a toll on the emotions of families as well as
    depleting financial resources.
    
    My mother was put on life support and recovered.  When I gave the
    permission for this to occur I was very aware that I might have to make
    a decision to remove the respirator and yet there was no evidence of
    brain damage so that I suspect that it wasn't really my choice.
    
    My heart goes out to both you and Pat, I hope we have given you support
    and in some small way made these endless days and weeks bearable.
    
    Joyce          

    My father passed away last September.  He had a massive stroke and
    had massive brain damage, we too had to make the decision whether to
    put him on a resperator or let him go.  We made the decision not
    to put him on the resperator, because he too had said when he
    was of sound mind that he did not want to be kept alive in 
    a vegatative state.  So we abided by his decision, it was very
    difficult decision.
    
    RE: 19.11
    
    My father stayed alive for 3 days, until my sister flew home to
    say goodbye to him.  He died 2 hours after she came home and went
    to see him.  She (we), felt he was waiting for her.
    
    My prays are with you in your decision.  God Bless.
    
    

    My grandmother had Alzheimer's disease, too.  She died of pneumonia,
    after many years of terrible decline.  At first, she lived at home, but
    after she could no longer care for herself or her house (an old,
    narrow, three-story house where the only bathroom was downstairs and
    the bedroom on the third floor - not very safe for a frail old person
    even when her mind was OK), her daughters convinced her to sell the
    house and move to a nursing home near my aunt's house, which was near
    where she had lived anyhow.  As her condition worsened, my aunt, who is
    much older than my mother, could no longer care for her, and we all
    moved her to a home near where my mother lived.  (That was pretty
    tricky, too, since of course she could not fly, and it is a full day's
    drive by car.)  As she got worse and worse, she was in and out of the
    hospital several times, and on various kinds of life support.  When she
    contracted the pneumonia, the doctor called the relatives together and
    basically asked how much further her children (my mother, my aunt, and
    my uncle - who lived a very long ways away and so was not as involved)
    felt she woulde want them to go with the life support.  They decided that
    she should be allowed to die naturally, after all she had gone through.
    It was very tough on my mother, I know.  I have never discussed those
    times with my aunt - she is in her seventies herself (although in
    superb health!); my uncle died a couple years ago.
    
    The odd thing is, I don't think anyone in the family thinks of my
    grandmother as she was in her last few years of life.  We all think of
    her as "Mrs. Necessity", as my father used to call her: a very capable
    widowed lady who raised her children and supported herself with no help
    from anyone for all those years.  I'm sure that is just how she would
    want to be remembered, too.
    
    /Charlotte

    
    Steve,
    
    You mentioned in your base note that you had to make a decision
    by the weekend - my thoughts, for one, were with you.
    
    If you feel comfortable at some time to discuss in here the results
    of your decision please let us know how it worked out.....support
    to you in whatever conclusion you came to.
    
    'gail
    
    

    Just wanted to close out this topic with an update.
    
    Pat's father passed away May 9th.  The decision was made not to use a
    feeding tube but he suffered no pain and slipped away quietly and
    peacefully.
    
    Thank you all for your thoughts and support.  It has been a difficult
    time and although it's hard to give up a parent, Pat takes comfort in
    the belief that her parents are together again.
    
    Steve

    Steve, I was missing my mother yesterday, but I also took comfort in
    that this is the first year in seven that she and my dad are together.
    
    hugs to you and Pat,
    Marge

    Pat made the right decision, Steve.  Making the right decision in
    the face of the pain Pat knew she would have to bear took a lot
    of courage and showed her great love for her father.  May you both
    heal from this soon.
    
    Many hugs and support,
    Barb