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It had almost become routine.

My mother had frequent urinary tract infections, and they often resulted in her becoming even weaker than she already was, and more confused than usual.  So, when the nursing home where my mother resided called me early in the morning to tell me that my mother had become unresponsive, and that they were sending her to the hospital, I was not surprised.  I went straight to the emergency room, arriving there just before the ambulance did.

But then something happened that was not routine.

Shortly after my mother was brought into the emergency room, the nurse asked me if I had spoken with a social worker.  “Well, not today,” I replied.  In all the previous times that I had been to the hospital with my mother, the social worker was someone who showed up the next day to discuss whether my mother lived alone, and what kind of care she would need, or whether I needed help selecting a skilled nursing facility.  I had never talked to one in the emergency room, especially before a doctor had even seen my mother.  But five minutes later, a social worker showed up, and the first question out of her mouth was, “Have you considered palliative care?”  As the name would indicate, palliative care focuses on making the patient comfortable rather than on treating the illness.  It is like hospice, only you don’t have be diagnosed with a terminal disease with only six months to live to qualify for it.

Clearly, they had come to the conclusion that my mother’s health had declined to the point that ordinary treatment was no longer appropriate.  They didn’t have to convince me.  I had come to the conclusion that hospice was the best thing for my mother almost a year earlier. However, my mother was not ready, psychologically speaking.  In her mind, hospice was a halfway house to euthanasia, and I was of the same opinion.  It is for people who want to die as quickly and as painlessly as possible, and if that is not your attitude, you are not ready for hospice.  Every social worker will deny this.  “People in hospice often live for years,” they will tell me.  “It’s just a different approach to end of life care.”  But I knew better, and so did my mother.

She would sometimes tell me that she hated her life, that she wanted to commit suicide, but that she couldn’t figure out how to do it.  “Well, Mom,” I would say, “if you are really tired of this, I can put you in hospice.”  She would become silent, and then, after a couple of minutes, she would begin talking about something else.  Nevertheless, such thoughts persisted.  I usually was the one who gave my mother her medicine in the morning, explaining each pill to her as she took them.  “And this one is your stool softener,” I would say, while holding it in my hand. “Suicide pill?” she would ask.  “No, Mom.  Stool softener.”  This happened on at least three different occasions.  So, clearly it was on her mind.  And yet, not surprisingly, she could not quite bring herself to go into hospice.  Once, when she was really sick, she just barely managed to get the words out, “I can’t take this anymore.”  “Do you want me to put you in hospice?” I asked.  Without hesitation, she said, “No.”

But palliative care was different.  At least, it was a different term, one without the connotations of a death sentence.  Of course, my mother already knew that she was dying. But it is one thing to accept the fact that you are going to die, and it is quite another to give up.  Perhaps, with this concept of palliative care, I could get for my mother all the benefits of hospice without the disturbing connotations.  As it turned out, however, my mother declined to the point that I realized she probably would no longer know the difference.  So, notwithstanding my mother’s wishes, I decided hospice would be best for her.  I had already signed a do-not-resuscitate order on a previous occasion, but now I signed a do-not-hospitalize order as well.  I felt as though I was signing a death warrant.

Is there a term for the opposite of “control freak”?  Some would suggest “easy going” or “laid back,” but that is not what I have in mind.  It is not merely that “control freak” is a substantive, whereas “laid back” and “easy going” are modifiers that makes them inadequate. It is the fact that these latter terms fail to capture that strong aversion I have always had to deciding what is best for others, or telling them what to do.  I once refused a promotion to manager for that reason.  Instead, I recommended a coworker who was younger than me by a generation.  He became manager, along with a raise, and I took my orders from him, which suited me just fine.  I never wanted to be responsible for anything but my own actions, or for anyone but myself.  Well, whatever the term for it might be, for the past year, I had been forced to make decisions for my mother, in some cases, contrary to her wishes.  For starters, I had put her in a nursing home.  On many occasions, at the end of a visit, she would ask me, “Can’t I go home with you?”  Saying “No” was a soul-crushing experience.  And now I had made a life and death decision for her.

Two weeks later, she became unresponsive again.  But this time she did not go to the hospital. For a day and a half, she received nothing but morphine.  And then she died.  If I had let her go to the hospital, she would have received fluids intravenously.  They could have intubated her to help her breathe.  And I could have had a feeding tube installed.  She might have recovered again, and then returned to the nursing home, after which she might have lived several more weeks, months, or even years.  But she received none of those things, because I denied them to her.

Now I have dreams that I forgot about my mother and left her somewhere—how frantic I am that she is lost, and how relieved I am when she manages to find her way back to me.

Originally posted to disinterested spectator on Fri Sep 21, 2012 at 12:52 PM PDT.

Also republished by CareGiving Kos and Community Spotlight.

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Comment Preferences

  •  Thanks for sharing. My mother has been diagnosed (16+ / 0-)

    with Alzheimer's, and has other issues, but is still mobile.

    Reading your wonderful diary will surely help many mentally prepare for looking at future options, however painful.

    Namaste.

    How did Supreme Court decision ACA help the 23 million still uncovered? Ask the 18,000 Doctors of PNHP -- they're not waiting, FORWARD now to pass H.R. 676, the “Expanded and Improved Medicare for All Act .

    by divineorder on Fri Sep 21, 2012 at 01:09:05 PM PDT

  •  a tender diary that shows you knew that your (17+ / 0-)

    mother didn't want to suffer, and you couldn't prolong her suffering.  My partner's mother was allowed hospice in the hospital. They treated her like gold; she had pain relief and oxygen so she could still have conversations. She would have liked to be home, but decided that moving again was too uncomfortable.  She knew it was her time as you knew.
    She will always be with you, just as she finds her way to you in the dreams. Peace for you and yours {{disinterested spectator}}}.

    Please donate to Okiciyap food pantry. . If love could have saved you, you would have lived forever.

    by weck on Fri Sep 21, 2012 at 01:17:26 PM PDT

  •  What a wrenching choice to have to make. It (16+ / 0-)

    was outside your comfort zone, but ultimately might have been your mother's true comfort zone, even if she couldn't admit it herself.

    We went through a long period of end-of-life care with my father in law, although we didn't start out seeing it that way. It began with him experiencing mysterious abdominal pain for which we never did find the cause. After a time his family practitioner prescribed him morphine which actually improved his quality of life. He took it when he needed it, but was still driving. He was going for treatment of dry-type macular degeneration to try and save his sight. During a visit he was driving us and his driving reminded me of my great-aunt when she was losing her sight.

    Then he had the traffic accident and my husband took leave to care for him in his home, ferrying him to more eye appointments which finally ended in his losing most of his sight. He was experiencing more and more pain which the morphine wouldn't help and saw a G.I. doctor and a heart specialist. He was passed back and forth. Then he had the heart attack, his second.

    He was deathly ill for months after bypass surgery but had given his health power of attorney to my husband's sister because he didn't trust my husband to make the right choices even though he handled my father in laws finances and paid all his bills. My husband tried to convince him not to have the bypass due to his age. My father in law resisted and was finally well enough to leave the hospital after several months.

    The years after that were not good ones. My father in law lamented his lost sight often. Also, he insisted on taking a sleep aid and has been prescribed Ambien. He hallucinated terribly on this drug, claiming to see "ugly people" and demanding to know why we allowed them to stay in his room which was supposed to be his alone. He wandered around and was frighteningly strong when he was in the grips of his hallucinations.

    Toward the end he would lie in the special hospital bed in our downstairs bedroom and demand to be taken inside. No amount of persuasion could convince him that he was already inside. The mysterious abdominal pain never was diagnosed and was with him until the end.

    You had the courage and the ability to do what was best for your mom. You didn't forget her. You made the tough choices for her even as she once did for you.

    "The object of persecution is persecution. The object of torture is torture. The object of power is power. Now do you begin to understand me?" ~Orwell, "1984"

    by Lily O Lady on Fri Sep 21, 2012 at 01:35:27 PM PDT

  •  I am sorry for your loss (13+ / 0-)

    and I wish you peace.

  •  I think it might help (20+ / 0-)

    to talk to more older people near your mother's condition, but with maybe a touch more cognitive ability.   They can help give you some perspective.

    BY, way of background, my mom has Parkinson's and dementia and her dementia is worse than her other symptoms so that she is losing her mental abilities much more quickly than her physical abilities.  She too speaks of dying, but then when something acutally seems wrong, she wants to go to the hospital immediately, she really isn't ready to die.

    But as she has continued to decline mentally, it is not unnoticed by friends and family.  And almost invariably, this is the bible belt afterall, I get some advice that still suprises me somehow each time I hear it.   "Pray for the good Lord to release your mother, let her go."  They don't believe in suicide, but they don't believe in one more treatment, any effort to stop an elderly parent who is clearly suffering from passing on.

    By their reckoning, and mine, you didn't abandon your mother, leaving her somewhere.  You let her leave you, which was much harder for you and better for her.

    If you could literally find her, and bring her back, would you?   Would she really want that, one more infection, another hospital stay, to live through more days where she knows she doesn't know things she should and is frightened and confused?  You didn't deprive her of a chance at a life she wanted to live.  We may all have doubts about doing the best thing,  but I truly believe you made all the right choices for her.  

  •  I understand that it was difficult for you (11+ / 0-)

    but you can rest assured that it was the right thing to do. When the quality is gone from a life, it is a kindness to let go.

    Hugs to you- I hope you can find the peace that you deserve.

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Fri Sep 21, 2012 at 03:28:20 PM PDT

  •  Hospice for years? (12+ / 0-)

     I made the decision for palliative care for my father after he had a heart attack.  He's had dementia for years and lives with me.  Hospice came for the time they were allowed, roughly 6 months and then they quit us.  They said my father wasn't terminal and his condition had "stabilized."  Medicare pays for hospice if a person is expected to live 6 months or less.  Medicare doesn't pay for palliative care.  People told us as well, that people stay on hospice for years, but we found out that's not really the case. We've been lucky to get some help through the VA and other private home care we pay for so Dad can still live with us in my home. He and my mother have medical powers of attorney, so I know their wishes.  When the time comes for them to pass, so long as I remained focused on them being comfortable through the process, I don't think guilt is something I'll feel.  I'm sorry you have had to go through the guilt you feel.  It seems to me you did the best you could do for your mother.    

    Shine like the humblest star.

    by ljm on Fri Sep 21, 2012 at 09:29:28 PM PDT

    •  If it can be proven that the person is (9+ / 0-)

      still in decline, Medicare will continue to pay for hospice--they did for my Mom--although she died a week or so after she was re-certified. I had to fight her doctor who listened to her rather than me--she was very "up" and lucid when visiting him.  Thankfully the agency which provided Hospice (which wasn't much--3 hours a week)  sent its doctor over and allowed a friend who helped with Mom's care give testimony about how Mom had declined over the past 6 months.  Her "numbers" were good though--so it was a battle.  

      "The radical invents the views. When he has worn them out the conservative adopts them." ~Mark Twain

      by PoliSigh on Fri Sep 21, 2012 at 10:48:37 PM PDT

      [ Parent ]

    •  Here in Oregon, a relative of mine recently spent (10+ / 0-)

      about 15 months on hospice before she died, and the family had no difficulty in keeping her in the program.  Perhaps there is some difference from place to place in how hospice agencies apply the rules.  Our experience with hospice was wonderful (and I don't hesitate to apply such a positive word).  Our relative was given a great deal of support to be able to spend her last days at home (which was her strong desire), and she and her family members received a lot of counseling to help with the process of letting go.

      So, I would like to stress that when it works properly, hospice care need not have any negative connotations.  Still, there is no way for us, as adult children, to make these kind of decisions without stress and second-guessing.  

      To Disinterested Spectator, your love and care for your mother shines through, and I would like to reassure you that she would thank you for helping her in her last days.  It feels strange to make decisions for our parents--isn't it supposed to be the other way around?  But to delay, or to prolong their suffering because we can't stand to take the responsibility, seems wrong as well.  I hope you can find peace with your decisions.

      •  Some times it is a matter of space (3+ / 0-)

        In the county I live in there are not enough hospice beds available for those who may live longer. At least that is what I keep getting told.

        "the government's role should be to uplift, enlighten, educate and ennoble the citizen, not oppress them with taxation and intrusive laws," Gatewood Galbraith, Historic Marijuana Advocate, aka "The Last Free Man In America," RIP 1-3-12

        by SmileySam on Sat Sep 22, 2012 at 10:39:18 AM PDT

        [ Parent ]

  •  I went through a similar experience with my (13+ / 0-)

    Mom last year.  I feel tremendous guilt--did I just let her die?  I know she was frightened as she began to slip away--but if I continued to run her to the hospital with every ailment--what kind of life would that have been?  She hated the hospital and got even more disoriented with each stay.  What could they have done to make her fully well?  Not much.  Mom had COPD, congestive heart failure, dementia--I couldn't frankly figure out how she was still alive with all of the problems she had.

    The process was crushing all the way around.  I am alone, so everything fell to me.  I feel guilty because I let that get to me and I resented a lot of the demands placed on me.  Sigh.  It was never going to turn out well.  I had fought to keep Mom well for 43 years.  Her first heart attack was when she was 42.  She made it almost to 85--I think I did a pretty good job of it (Dad wasn't able to be as much of an advocate as I was--he just emotionally was unable to deal with her illnesses).

    "The radical invents the views. When he has worn them out the conservative adopts them." ~Mark Twain

    by PoliSigh on Fri Sep 21, 2012 at 10:58:45 PM PDT

  •  For those of us with parents in their 70s (7+ / 0-)

    this diary is a poignant and powerful reminder of what's to come.

    Peace to you.

    The "extreme wing" of the Democratic Party is the wing that is hell-bent on protecting the banks and credit card companies. ~ Kos

    by ozsea1 on Sat Sep 22, 2012 at 12:47:50 AM PDT

  •  My husband is on palliative care... (8+ / 0-)

    I understand your dilemma and your feelings. I know others have told you "you did the right thing" so I won't say that.

    The only questions you should ask yourself is, did she have any quality to her life? Did she still have joy in her life? Did she have a future free of pain and suffering?

    She was already dying and knew it. All you did was let her go.. In my book that takes a lot of courage and love.

    Please don't beat yourself up over loving her in the only way you could at that point in her life...

    "Growth for the sake of growth is the ideology of the cancer cell." ~ Edward Abby

    by SaraBeth on Sat Sep 22, 2012 at 03:51:06 AM PDT

  •  be at peace (6+ / 0-)

    with yourself.  And stop beating yourself up.  Each of us goes through the "what more could I have done?" machine, shredding our emotions and distorting our perspectives.

    Be at peace with yourself.  Get out all of the pictures (films?)from your mother's life, and (for a while, at least) make a regular time to go through them, and remember all of the birthdays and Christmases and funny times, and vacations where she was vibrant and alive and in charge of herself.

    You will eventually see that everything in life is in balance, somehow, someway.  It is all natural.  Buying your mother a week or a month or a year of pain and frustration and discomfort does not do her life justice.

    I'm 66.  My parents are both gone, my family is gone, and more close-close friends that I can count on 2 hands.  One thing that hits me is that life itself is a process.  Delirious joy, soul-shattering lows, and everything in between.  It is life, in all of its glory, all of its pain...  

    Be at peace with yourself.

  •  You did the kind thing. (6+ / 0-)

    Know that you did the right and kind thing. Even though it was difficult. Even though you miss your mother.

    When my mom and I went through this with my dad, she was extremely explicit that she wanted the very same thing -- treatment when sensible and then no pain, hospital when it made a difference and hospice after that.

    We still miss my dad, of course. But I am comforted with the knowledge that I know what to do when my mom's time comes. I also know it will be difficult. But it will be the right thing.

    May you be comforted by the knowledge that you did the right thing.

  •  Something my grandmother taught me (7+ / 0-)

    when I was helping her through the end of life process was that medical treatment is NOT benign.  It looks that way on teevee. Stand back, clear, bzzz. Never a mention of the burns, the broken ribs.

    Medical treatment hurts. Being on a vent was a horrible experience for her, needle sticks hurt, she hated being cathed, IVs infiltrate, Gtubes get infected.  She could have spent an extra few weeks or months in an ICU in diapers being stuck with needles on a regular basis but she knew that was no way to go. She chose less time on palliative care and died in my home with great-grandbabies crawling over the bed.  Comfortably and naturally.  Palliative care is a godsend. Choosing it should be source of pride, not guilt. At the end I even stopped her oxygen. You are welcome, Gram. I love you. I hope someone will do the same for me.

    The natural conclusion of a long life is death. It doesn't always need to be treated as a crash medical emergency.

    Newt Gingrich: Believes marriage is between one man and a series of ever younger women. Wife #1 born ~ 1936, divorced when in her mid-40s...Wife #2 born ~1947, divorced when in her mid-40s...Wife #3 born ~1966.

    by trillian on Sat Sep 22, 2012 at 07:59:19 AM PDT

  •  My father (6+ / 0-)

    died last spring from complications due to Alzheimer's.  He was in assisted living with my mother.  After his second fall and broken hip he deteriorated quickly, and we put him on hospice.  He died within a relatively short period of time after that.  It felt like the humane thing to do.  Because of the advanced stage of his dementia, he wasn't able to make decisions like that.  Now my mother, who is in the same assisted living place, is starting to deteriorate quickly.  She has some dementia, but not like my father.  She has frequent urinary tract infections, and has had "mini-strokes."  My siblings and I are doing the best we can to manage her health care and will have to make some difficult decisions in the next year or so I think.  What amazes me is how common this all is, and yet how little it is spoken about.  I appreciate hearing your story and reading the comments of others dealing with dying parents.  I come from an old New England Yankee family.  We don't talk a lot about the feelings involved in the decisions we have to make.  We just make them the best we can.  I am very grateful however that I have three siblings to share this with.  Hearing your story about making decisions on your own makes me realize how lucky I am in that regard.

  •  Wonderful Service, Disinterested (You are... (3+ / 0-)

    ...anything but)(disinterested, that is).   Honest discussion of this great dilemma is so helpful, to everyone involved.
    I have not been lurking much or posting at all for a long time, but your diary pulled me out of hiding.  I plan to recc everyone who commented so kindly, would do it twice if I could.
    Thank you.
    lurker

    "So, Pal, now tell me: What did YOU do to help the least among your people?" "Well, ummm, Mr. God, Sir..."

    by lurkersince03 on Sat Sep 22, 2012 at 11:46:20 AM PDT

  •  I killed my mother-in-law. (3+ / 0-)

    So to speak. It started when my wife and I placed her in a nursing home for a week while we took a much needed respite break after 3 years of pretty much 24/7 care in our home. She caught Vancomycin-resistant Enterococcus (VRE), an essentially incurable hospital-borne infection.

    The next 6 months saw her in and out of the hospital with multiple near-death episodes from repeated urinary tract infections. Her quality of life diminished to near zero. But my wife wasn't ready to let go, and insisted on resuscitation time after time.

    Eventually, Mom was in the hospital yet again and we watched as her consciousness slipped away. A nurse took me aside and said, "She's gone. Maybe you should take your wife to dinner and then home for some sleep." I did, and we got a call about 1:30 am that Mom had passed.

    My wife has never forgiven herself for not being there at the end, and sometimes I feel guilty for talking her into leaving. But I am convinced that it was best for my 81 year old mother-in-law. I think she had suffered enough and was ready. At least that's what I tell myself.

    Congress shall make no law abridging the right of the people peaceably to assemble.

    by edg on Sat Sep 22, 2012 at 12:15:40 PM PDT

  •  The last year is a bitch, (1+ / 0-)
    Recommended by:
    s l o w loris

    and no matter what you do, you will feel bad. My father was one of four children. The oldest brother committed suicide when it became obvious that he was on the Road Home. His family was devastated. The oldest sister lived to 92 in various assisted living communities, but her last two years were a descent into misery which she shared with her son and his wife, who were also caring for the wife's mom. They were exhausted and at the end of their tether. The other sister lived to 94, and most of the last years were spent at home with paid help, though when she got really sick, my cousin moved her to a nursing home closer to where she lived. This helped the cousin, but a few hundred thousand dollars disappeared overnight and my aunt was miserable. My dad insisted on staying at home with hospice care, but this entailed me giving up a job and my family to move in with him to help out. Even then, the last year or so was not pleasant.
    What I am trying to say here is that there is no right answer, no magic solution. Don't beat up on yourself. You did the best you could.

    "There's a crack in everything; that's how the light gets in". Leonard Cohen

    by northsylvania on Sat Sep 22, 2012 at 02:57:43 PM PDT

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