Voicelessness and Emotional Survival Message Board
Voicelessness and Emotional Survival => Voicelessness and Emotional Survival Message Board => Topic started by: daylily guest on June 09, 2006, 09:46:37 PM
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Hi everybody:
I should warn you up front that this post has nothing to do with narcissism, and some of you may wonder why I wrote it. I put it here because I've come to believe that this is a place where we can share all of our tough dilemmas, and I value the counsel I've received here.
I received a phone call from one of my mother's doctors this afternoon. He finally put into words what I've been suspecting. She does not have long to live. Despite aggressive antibiotic therapy, she is losing ground. Her mental status has deteriorated every day this week, and she now has aspiration pneumonia. She is aspirating either her own secretions or her tube feedings (it's impossible to tell which). This problem will be permanent unless her mental status improved significantly, and that is almost impossible.
She will not be allowed to remain in the hospital until the end. We therefore have two choices: either return her to the nursing home, which we loathe but which will allow continued IV antibiotics, or put her in the inpatient hospice unit. The latter is requiring that we discontinue the IV and reduce the tube feeding by 50 percent.
At this point, it has become primarily a moral issue. My mother is a fairly devout Catholic, and she would not want anything done that is contrary to the Church's policy. She and I actually talked about this a few times while Pope John Paul was dying. (She had great admiration for him, and as a person of Polish descent, great love for him.) I have read the relevant Church documents several times, and I actually went to see a priest yesterday to seek advice.
Neither the documents nor the priest offered clear direction. The pastoral letter on care of the sick and dying stated that there is no moral obligation to maintain a "precarious and burdensome" state of life, but that the presumption should always be in favor of "normal care" and "preserving life." Similarly, while the presumption should always be in favor of nutrition and hydration, there is no moral imperative to provide either when they become burdensome to the patient and death is imminent. If the continued provision of tube feeding causes my mother pain (through aspiration pneumonia) and does not prolong her life (she will die of infection anyway), then I suppose there is no moral obligation to continue it. I have also read that it is unlikely that she will experience pain associated with the absence of nutrition and hydration; any symptoms can be alleviated through normal care, such as swabbing her mouth or wetting her lips. I also read a study that said there is no evidence that tube feeding actually prolongs life or function in severely demented patients, and I believe my mother is entering that category (through brain damage, or cessation of brain function).
I want her to have the superior care of the hospice unit--more attentive, more personal, more focused on maintaining comfort and relieving pain. I really can't bear the thought of her lying in the nursing home, soiled and stiff and ignored, for hours on end. For the most part, the nursing home staff do what they can, and some of them have been remarkably attentive. But the care of the living will always take precedence over the care of the dying, except in an environment dedicated to the latter.
I've also asked myself over and over whether I would discontinue the IV antibiotics because I want this to be over sooner. I think that if there is no hope of recovery--even temporary recovery--then there is no point in continuing a treatment that might suspend my mother in half-consciousness and thereby prolong her suffering. I lie awake at night wondering if she can breathe. I know she could not tell anyone if she couldn't. I can't bear the thought of her choking to death because she is too weak and too confused to push a call button, or worse--because no one answers it. It's pretty clear that even with continued antibiotics, the combined infections (some of which are antibiotic-resistant) and pneumonia will overwhelm her, just more slowly.
I'm going up tomorrow morning to meet with the hospice social worker. I believe all four of us will be there, and while I care very much about how my sisters and brother feel--and how they will be able to deal with the consequences of any decision we make--I know that, ultimately, my mother entrusted this decision to me. Only I can sign the papers. And I think one reason she did that is because she knew I would take the trouble to balance the moral with the medical, that I would put more emphasis on what is right than what is expedient. And she would want what is right to be done.
In the end, the priest said that he could see the argument for discontinuing the antibiotics, but not the nutrition/hydration. I think he's probably right, and given the new development of aspiration pneumonia (which I only learned about after I had already spoken with him), I think it's probably right to reduce the quantity of feeding because it would reduce the likelihood of aspiration of her stomach contents. My mother won't die of lack of food or water, and attentive care will keep her comfortable. But it is very hard. Very hard.
If you pray, please pray that I will have both the wisdom to know what to do and the strength to do it. And pray that my mother will soon find peace, that she will breathe clearly and deeply and know that she is surrounded by love.
best,
daylily
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((((((((((Daylily)))))))))) ((((((((((Daylily's mother))))))))))
holding you both in the eternal light of His love. praying for peace for you both, and for your other family members. praying for strength for you and for her. praying for a good, clean, and peaceful transition for her, without pain, without fear.
please post and/or PM, please keep us updated.
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So sorry for this tremendously difficult time for you and your family, Daylily.
I will pray for you all.
Sela
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Daylily, I'm so sorry. It is very hard.
You are being very loving, imo, to allow her hospice care.
I don't think antibiotics OR tubes down her throat (both very recent inventions) are "normal" so I'd be at peace with whatever you decide to discontinue.
And about the little piece of doubt:
I've also asked myself over and over whether I would discontinue the IV antibiotics because I want this to be over sooner
...
I think there is an answer, and I believe this with all my heart:
You can want what is absolutely best for your mother (nothing to prolong her suffering or disrespect her faith) and at the same time...you can want it to be over as fast as the universe will allow. That is totally normal during this kind of vigil and it is NOT an evil thought. It is human and natural and merciful.
Hops
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Yes, Daylily, I will pray for peace, strength, and wisdom.
Love, Pennyplant
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Daylily,
I am praying that you find the strength to make the decision that is best for all concerned.
I went through this exact scenario a year ago January, when my mother quite suddenly contracted pneumonia while in the later stages of Alzheimer's. Rather than trying to prolong, what was, by then, a pitiful existance, we chose the hospice care/reduced feeding route.
Having sat with her for the last 3 days of her life, I can say that the hospice workers are wonderful and kind and keep the patient as comfortable as they possibly can. It is not easy to watch the decline, but it also is not painful or torturous to watch. They are kept peaceful and calm with morphine and basically drift away.
Many blessings and prayers to you and your siblings.
Brigid
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daylily,
Love to you and your family. The answers will come to you when you need them. You are taking great steps to search for the answers. Take some time to just "listen." SOmetimes we need some peace and not action to see what we need to do.
Love, Beth
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Daylilly These Days MUST be so sad .Wisdom seems to be encoded into your Heart and Mind.
FAITH PRAYER AND LOVE TO YOU
moonlight
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Oh (((((((((Daylily))))))))) I can’t imagine what you are going through right now, but I do know in my heart that you are a good person and will do the best for your Mum. Saying prayers for you and your family.
H&H xx
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Hello everybody,
Thanks for your support and kindness. I appreciate it more than I can really express.
The decision is being made for us. My mother's white blood cell count has soared to roughly three times normal--she is losing the battle with infection despite the most powerful antibiotics they've got. Yesterday, she was much less responsive. I'm not at all sure she really knew who I was, though it's touching how the word "Mom" automatically draws her attention.
Her doctor said that he would watch her overnight, but that probably she should be moved to hospice tomorrow. He was very clear that she is at "end of life" status.
This clarifies things for me. My duty is to give her the most peaceful, dignified end possible. We have fought to give her every chance to recover, and now it's time to let her go. The doctor said, very kindly, that there is a point at which prolonging life can become prolonging death. I will not do that to her. I will not hold her prisoner in some no-man's-land between life and death because I am not ready for her to go. Fortunately, I think my brother and sisters feel that way, too.
Once again, thank you all.
daylily
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I am glad, Daylily,
Now you get to do the peaceful part, which can in some ways be quite beautiful.
It's what I would want, to let nature have me, and be near people who loved me.
Strength and peace to you for your vigil, and I hope you can work in some sleep....
Hops
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Dear (((((((((Daylily))))))))),
It's not easy letting go but it's very generous, in the long run, and sounds like the most compassionate thing to do now. I'm glad your sibblings are in agreement. Hospice will keep her comfortable and maintain her dignity.
Keeping you and your family in my prayers.
Sela
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My duty is to give her the most peaceful, dignified end possible. We have fought to give her every chance to recover, and now it's time to let her go. The doctor said, very kindly, that there is a point at which prolonging life can become prolonging death. I will not do that to her. I will not hold her prisoner in some no-man's-land between life and death because I am not ready for her to go.
Well put. You are obviously well adjusted in your perspective on this and I congratulate you for that. You have nothing to feel guilty for, you have carefully weighed all aspects of the situation and are making a very educated and well informed decision. As you may believe/know, your mom will be in a better place when she slips from these earthly bonds. Still, I know this isn't easy and I will say a prayer for you and your family.
Adrift
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(((Daylily)))
Thank you for taking the time to keep us posted on your mother's life. There are still memories to come. It will mean a lot to you later on that you did this for her. Just being with her. Even if she doesn't seem to know, she does. This is one of the most important things you can do for someone. It is very special.
Love, Pennyplant
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Dear Daylily,
I'm sending my love, prayer for comfort and strength for you and your mother. Bless you and your family. (((seasons)))
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((((((((((Daylily))))))))))
lighting a candle for you both.
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I am ready to leap off the nearest tall building. My mother's condition has improved a bit. She's in the hospice, but they're already making noises that she may "stabilize" and have to go back to the nursing home. She basically has 48 hours to deteriorate or move.
The hospice unit is beautiful, not unlike an upscale hotel, and the staff is very loving and attentive. It's incredibly sad that my mother has to be dying to get this level of care, and if she's not (or not at this moment), well, too bad--back to the nursing home with her.
I don't even know what to pray for any more. My health has taken a hit, too (probably stress)--I have a fever and a nasty cough.
Oh, ick.
daylily
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Oh, daylily. They want your mother to die on a timetable they set for her, or she can't stay in the nice place? How horrible. Is that even legal? What about Art Buchwald? [ceased dialysis and then throve happily in hospice for weeks and weeks and is now home in Martha's Vineyard last I saw]. Or Terri Schiavo?
Can you talk to an elder law attorney? I know it's the last thing on earth you want to do.
In re stress - try to eat, and if you take calcium supplements try the Ca-Mg-Zn kind if you don't have any reason to avoid them [like kidney stones] - I became ill far less often under stress if I took my minerals regularly - might work for you too.
In re fever and cough, you might want to see a doc. If she picked up a bug in hospital, you may have a trace of it yourself now, and your immune system will be stronger than hers but might benefit from a little help.
I am so sorry, you must be beside yourself.
Lighting an entire section of votives for you both.
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Ohh Daylily,
I'm so sorry. Not to be irreverent but I am lighting the nearest Viking and shoving him out on a barge.
There is no way it can be perfect. Nature can be so nasty, nature is unmoved.
Maybe one way to help get through it is to just keep on being in the moment.
Whatever the moment is, just be present to it.
If you're tired enough to be irritable or you're sick, you're normal.
Florence Nightingale crossed with Mother Theresa has left the building.
Just be you, weary you.
Be good to yourself. Hope you can take a few hours to nap and have a bath.
Drink lots of water.
What small useless things to suggest. Can't fix anything,
I will pray for you.
(((((((((((Daylily and Mom))))))))))))
Hops
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Dear Daylily
What can I say? Logic works for me. What your mother feels is not what you feel. Please be strict with yourself about how totally separate you are, if you think it will help you?
Your mother may live for some time, or she may die soon: you can’t affect that. Her body and mind will decide for her. You’re not responsible for her.
Stay away from tall buildings! How about some vapour inhaling over a bowl of hot water for your cough and fever? Please look after you. Small things can make a big difference.
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Hiya Daylily:
Well.......isn't it weird? How one minute a person seems so near death and another they sort of.....perk up?
It can be unsettling and confusing. Here you are, trying to come to grips with letting go and all of a sudden you don't have to do that, maybe.......yet.
One good thing....you said you aren't "ready for her to go" so maybe this will be a little more time for you both? The next couple of days will probably indicate what direction to go in.
Please take care of you Daylily. See your doc to make sure re cough and fever, maybe? Chicken soup. Lot's of fluids. Get as much rest as you can.
(((((((((((((((((((Daylily)))))))))))))))))))))))
This won't last forever.
Sela
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I am ready to leap off the nearest tall building. My mother's condition has improved a bit. She's in the hospice, but they're already making noises that she may "stabilize" and have to go back to the nursing home. She basically has 48 hours to deteriorate or move.
The hospice unit is beautiful, not unlike an upscale hotel, and the staff is very loving and attentive. It's incredibly sad that my mother has to be dying to get this level of care, and if she's not (or not at this moment), well, too bad--back to the nursing home with her.
Oh Daylily, something similar happened to a co-worker of mine. It was terribly stressful for her. As things turned out in her situation, her father did not end up having to be moved back and forth. He was able to stay in hospice. Perhaps it will turn out that your mother does not ever have to be moved. It seems like moving back and forth would be very stressful for all concerned. I hope that does not have to happen.
Perhaps just pray for the best possible outcome. Or perhaps you have prayed enough now. I'm very sorry this is so hard.
Love, Pennyplant
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Daylily, I am just catching up here.
I am so sorry for what you are going through. I feel for you, being in a similar (yet not so dire)situation with my mom, I understand how helpless you feel. Since my mom has been in and out of near death several times now, but is severely incapacitated still, and when coherent, is not particularly fond of being in such a state....we have all just let it go. Let go of the wanting it to be resolved, wanting it to be different, wanting more for her, wanting death for her, wanting her to either get better or go to rest...
It's so very hard, and I hope you will take what I say with love as I give it...but we cannot control these things, even though we think we can by reducing meds, increasing meds, changing venues, etc....
Like most painful situations, it's a matter of sitting still in the pain of it all, and just accepting that it hurts, and that we cannot know, as humans, what to do all the time. Death is one of those places where that reality hits us the hardest at our core.
Sending you and your mom: peace....faith.....love.
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Hello everybody,
My mother passed away at about 1:00 p.m. today.
Thank you all for your support, prayers, and good wishes. This has been a difficult time, and it touches me a great deal to know that so many of you have taken time out of your lives to wish my mother well.
daylily
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Dear Daylily, I am sorry. May the peace of the Lord Jesus Christ guard your heart and mind as you grieve.
Hope
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Oh, Daylily. May your memories console you, and your faith comfort you. She is at peace. May you find peace in that as well.
Sending love. love and more love....
Mum
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daylily,
God bless you and your mother. I wish you peace.
Love, Beth
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daylily,
Not sure what you're feeling now, probably several different things.
But God's peace upon you.
mud
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dayLilly ,Sending Love and Light God Blessing to you
MoonLight
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((((((((((((((daylily)))))))))))))
Thinking of you now. best wishes and hopes that you know you are not alone.
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Dear Daylily,
I am so sorry.
Peace and rest to your mother at last, and loving comfort to your sore heart.
(((((((Daylily)))))
Hops
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Daylily, I'm so very sorry for your loss. I hope that it was peaceful and that you know you did your very best for her.
Love, Pennyplant
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(((((((((((Daylily)))))))))))))))
I am so sorry for your loss.... I hope remembering the good times helps you through this tough time.
Take care
H&H xx
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Daylily:
Sailing To Byzantium
William Butler Yeats
I
That is no country for old men. The young
In one another's arms, birds in the trees
--Those dying generations--at their song,
The salmon-falls, the mackerel-crowded seas,
Fish, flesh, or fowl commend all summer long
Whatever is begotten, born, and dies.
Caught in that sensual music all neglect
Monuments of unaging intellect.
II
An aged man is but a paltry thing,
A tattered coat upon a stick, unless
Soul clap its hands and sing, and louder sing
For every tatter in its mortal dress,
Nor is there singing school but studying
Monuments of its own magnificence;
And therefore I have sailed the seas and come
To the holy city of Byzantium.
III
O sages standing in God's holy fire
As in the gold mosaic of a wall,
Come from the holy fire, perne in a gyre,
And be the singing-masters of my soul.
Consume my heart away; sick with desire
And fastened to a dying animal
It knows not what it is; and gather me
Into the artifice of eternity.
IV
Once out of nature I shall never take
My bodily form from any natural thing,
But such a form as Grecian goldsmiths make
Of hammered gold and gold enamelling
To keep a drowsy Emperor awake;
Or set upon a golden bough to sing
To lords and ladies of Byzantium
Of what is past, or passing, or to come.
********
from Ash Wednesday
T.S. Eliot
VI
Although I do not hope to turn again
Although I do not hope
Although I do not hope to turn
Wavering between the profit and the loss
In this brief transit where the dreams cross
The dreamcrossed twilight between birth and dying
(Bless me father) though I do not wish to wish these things
From the wide window towards the granite shore
The white sails still fly seaward, seaward flying
Unbroken wings
And the lost heart stiffens and rejoices
In the lost lilac and the lost sea voices
And the weak spirit quickens to rebel
For the bent golden-rod and the lost sea smell
Quickens to recover
The cry of quail and the whirling plover
And the blind eye creates
The empty forms between the ivory gates
And smell renews the salt savour of the sandy earth
This is the time of tension between dying and birth
The place of solitude where three dreams cross
Between blue rocks
But when the voices shaken from the yew-tree drift away
Let the other yew be shaken and reply.
Blessed sister, holy mother, spirit of the fountain, spirit of the garden,
Suffer us not to mock ourselves with falsehood
Teach us to care and not to care
Teach us to sit still
Even among these rocks,
Our peace in His will
And even among these rocks
Sister, mother
And spirit of the river, spirit of the sea,
Suffer me not to be separated
And let my cry come unto Thee.
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((((((((((daylily))))))))))