posted 09-11-2000 02:16 AM         

I may not be the normal Hospice patient, primarily because I have made my own peace with death. It is not something to be feared. It is not an end. I do have one saying that people react to differently. That is: "Death isn't the problem. It's the process of dying that is the problem." I cleaned that up some, but you get the idea.

I have posted my thoughts and writings on death and dying on my website. I welcome all to read and respond.

Hospice is perhaps the single greatest happening for me in the last year, maybe longer. Their compassion and care go far beyond what is available in today's medical establishments. The wonder of it is that should I become hospitalized for some reason, I do not loose hospice. They will be right there with me.

posted 09-11-2000 03:20 AM         

Such beautiful stories are shared here. We are truly a community and each thing written has become a part of my own healing. I, too, have lost special family members - my mother 10 years ago and my sister 9 years ago. My stories are not as important, I think, as the knowledge that my experiences are shared over and over again with each of you and with uncounted others.

posted 09-11-2000 03:36 AM         

quote:

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Originally posted by dedwardskansas:
This show was excellent as far as it went. What was not covered is the all to common unexpected and sudden death. The people covered in this show had time to prepare and come to terms. What happens when death is not a slow methodical process but a violent and unanticipated event. My wife and I just lost a close friend who took her own life. Dealing with death at this level seems much more difficult. Hopefully future shows will deal the issue of sudden death.

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posted 09-11-2000 04:53 AM         

I grieve to think of you alone
That first night when I am gone:

How darkness will assault your breath
And mind with frightening thoughts of death;

How inescapable the stress
Of that strange new emptiness;

How dawn such as you've never seen
Will streak its gray and yellow-green;

How shadows in a drifting pall
Will shift across this friendly wall!

I grieve that I shall not be there
To talk with you in your despair--

To reassure you in a glance
Mastery of the circumstance,

Speaking a language coded to
The key that I have given you;

Whispering low some silly word
That but our rooms and we have heard--

Nomenclature which should confound
The horror of the underground!

I'd sit a little while and speak
With my lips moving on your cheek

To help you face the awful dread
Of watching by your newly dead . . !

Oh, that somehow I might contrive
My first night dead to be alive. . !

-- Donald Jeffrey Hayes 1904 - 1991

Donald Jeffrey Hayes spent most of his life working as a Vocational Rehabilitation Counselor for the State of New Jersey. This poem was written sometime in the 1930s. Once I found it, I put on my detective's hat and I learned that Hayes was living in retirement down in Raleigh, NC.

I mailed a copy of this poem to him with SASE and my request that he autograph it for me. My letter from Calgary arrived in the afternoon mail. Donald Jeffrey Hayes had died that same morning. My SASE was returned with
a brief, kind note from one of his daughters.

posted 09-11-2000 09:04 AM         

quote:

---

Originally posted by elizowen:
The premiere of ON OUR OWN TERMS examines the ways patients and caregivers are trying to overcome American culture's denial of death.
As you watched the program, what was your reaction?

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posted 09-11-2000 10:42 AM         

As for your own courage, though, don't sell yourself short: courage only means that we face difficult circumstances with all of the dignity and integrity that we can find within ourselves. Simply surviving the death of a loved one is an act of courage.

posted 09-11-2000 03:42 PM         

quote:

---

Originally posted by elizowen:
The premiere of ON OUR OWN TERMS examines the ways patients and caregivers are trying to overcome American culture's denial of death.
As you watched the program, what was your reaction?

---

posted 09-11-2000 06:18 PM         

Cindy, I'm so glad you posted about your mom, Julia and your brother, Patrick. He assumed an extra ordinary role.

Our Catholic pastor too printed information in the bulletin regarding the program.

Recently, I spoke with my dr. about Hospice care. Being a very independent person who has a cemetery plot, an advance directive, and made arrangements with my pastor about what I want I am still lery of Hospice taking over my life in my home. If I did not have a caring, supportive husband I would look for a residential Hospice like the one in the program. (Does Medicare cover this type?)

I am fortunate in that death is not a stranger to me. I often accompanied my dad to funerals of my grandparents contemperaries. They both died young: Grandpa at 54 when I was 7 and Grandma at 62 when I was 10. The jr. high choir always sang at funeral Masses. I lost a close friend to leukemia when we were both 20.

But even this did not prepare me for the unexpected death of one of my beloved sisters in 1973 at the age of 22 (cerebral anuersym.) Her twin has never really gotten over this. A drunken driver killed an 18 yr. old cousin just 6 days after a family reunion and her mom, my cousin still grieves for her daughter. Unexpected death gives you no chance to prepare emotionally.

Most people don't want to talk with you about dying. They prefer to hear cliches, e.g. "I'm hanging in there." Two exceptions are my 79 yr. old dad who says, "See you in Heaven." (My folks live over 1000 miles N of us.) And our 31 yr. old son who asks, "What's it like to know you're going to die far younger (56) than you ever expected." (Only 1 of our 4 children live here and is no longer able to be supportive.)

I even stayed up way past my bedtime to listen to the post discussion lead by the founder of the Zen Hospice in San Francisco. It was worth it.

Looking forward to tonight's program.

Sending Peace to and Prayers for you all.

posted 09-11-2000 06:41 PM         

quote:

---

Originally posted by elizowen:
The premiere of ON OUR OWN TERMS examines the ways patients and caregivers are trying to overcome American culture's denial of death.
As you watched the program, what was your reaction?

---

posted 09-11-2000 08:48 PM         

quote:

---

Originally posted by janevatech:
Especially to Julie, RN (this is Jane, also in VA): I agree that in hospice we more often than not had patients and families referred pretty late in the process. We were continually engaged in community education to make hospice services known, and promote admissions early enough that the full effect of hospice could take place. Did you have questions, as I did, about Bill's saying that he couldn't really be admitted to hospice because of the limited insurance coverage? I thought that all hospices admitted patients without regard to ability to pay, but perhaps that is not a universal principle among hospices. It has been my experience with the 2 hospices that I've been associated with. We also had expedited Medicaid eligibility so that patients could have coverage right away. Do you have any thoughts on this? My understanding as a hospice social worker was that patients were not ever declined for admission due to inability to pay. I would welcome your thoughts on this.

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posted 09-11-2000 10:52 PM         

Thankyou for your kind words. I wish you peace and strength in your situation.

My mother had no income; her hospice care was covered by Medicare. I believe many hospices accept patients for whatever they can pay.

My mother was also reluctant to enter the hospice, but she was glad she did. She said it allowed her to return to a mother/son relationship with Patrick, instead of the patient/caregiver roles that caused a great deal of conflict between them.

Cindy

posted 09-12-2000 07:09 AM         

My dear husband fought what was allegedly termed "lung cancer" (they were never able to prove it through biopsies - all were "inconclusive" and there were no nodules or lesions in his lungs) for much longer than the average person with brain tumors even lives. Fortunately, my husband was able to remain at home with the help of the local visiting nurses association. And, he was able to retain most of his weight He didn't want them to have a remaining mental image of a "skeleton" as he had from the death of his foster father. That was very important to him.

When I tried to question this physician about the "what if" (because I had been told by another physician almost a year earlier there was no way they could save my husband's life), I was coldly told I shouldn't "borrow trouble". And, when I told him I wanted honest answers to my questions I was told "You ask too many blunt questions".

What angered me most was his oncologist never, ever told him he was dying; adamantly refused to tell him he had decided to discontinue treatment. He announced to him on Christmas Eve he was sending him home to a hospice program and he would see him in a couple of months. That was the end of the discussion. He left it up to me to explain to my husband what a hospice was and why he was being entered in one. To tell him there was no treatment left to try.

Although that doctor is an alleged "expert" oncologist, he is still treating his patients and their loved ones the same way today. This is evidenced by the fact a friend is dying of kidney cancer and this same physician is refusing to have any discussion with the wife regarding the failure of treatment or true prognosis though she can see for herself he is dying. These terrible treatments are of no use and only serve to destroy the quality of life he has, but the doctor will not even consider telling him the truth or withdrawing the treatment.