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Which death options are important to you? Why?
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Name: Sue Hodges
Email: Suejhodges@aol.com
Date: 06 Jun 1999
Time: 12:46:13
Remote User:
(Sue kindly gave me permission to share with you this "I Need to Talk to You" message she sent to her many friends on May 13, 1999, after the death of her Mother. Jim Hasse)
I want to share my thoughts and feelings about my Mother's death and dying with friends and members of my community. I need to tell you these things now.
My mother had an advance directive and had designated me as her Durable Power of Attorney for Health Care.
Having an advance directive alone is not enough. People have to be trained to know how to carry them out and you, if you designate someone to act in your behalf, are the trainer. If you have an advance directive, spend some time talking to whomever you designate to carry it out for you and to your health care providers so you and they can be very sure of what you want. Be as specific as possible. If you don't fill in the blanks, someone else will, and it well may end up not being your wishes. The conditions under which you want your directive activated, whatever they may or could be, need to be clearly defined. It's definitely something you need to give thought to. Death and dying don't necessarily come with a road map. Plot your own.
I had to recognize a decision point for my Mom when she couldn't speak for herself. She was delirious with the fever her body had generated. I believe now it was her exit mechanism. I didn't readily perceive that at this exact moment I had to make a crucial decision for her. I also recognize now that she had been in this process of dying during the time I was in the hospital, the week before, and she had been waiting for me, waiting until I could come to her, so she could let go.
The day I came, she started her process of dying after the first hour I was there. We got to talk before that. I know so much more now, putting it all together. When I was going through this process with her, it was moment to moment experiences, linked together, and I had to figure it out as we went along this path.
When her fever spiked, the doctor on call ordered standard treatment. He didn't know she was a hospice patient, with a diagnosis of terminal cancer. I don't know if anyone really got it that the decline she experienced over several weeks indicated her body's preparation for death. When the nurse brought a syringe filled with an injectable antibiotic, I was faced with a decision point that I never really thought would come like this. I placed myself between my mother and her. I had to tell her no, she couldn't give this shot. It was the hardest thing to do, and an act of the highest courage and trust my Mom had placed in me.
My Mom knew that I would do this for her when she needed it. Her last clear words to me an hour before had been, "Don't let me suffer." We had talked about this before; her wishes were, that if a process leading to her dying were to take place, not to intervene, but to let her go. I was in tears, but steady and sure when I spoke to the nurse. I was alone in doing this, but I felt myself surrounded by love and support and that made me strong. I had spoken with the hospice nurse on the phone, and with my brother and his wife: all agreed that this was a point where a decision had to be made and that I was the only one who could make it.
I want you to know that love and support came from many of you, from my relationships through advocacy work in our community, from experiencing how we support each other through tough and controversial issues, even when we don't agree on routes to common destinations. I am so very very grateful for the skills I have gained in advocacy, from what each of you has taught me, learning to fight battles, whether clearly defined by signs or picket lines or by an experience like Mom's dying. Those skills came to my aid at this time.
She was in a lot of pain. She did not have an easy death. Ease began to come in the last two or three days, when I could be by her bedside for long hours and monitor how her medications were given. As her pain increased and her body conveyed this, I pushed for more: stronger doses and more frequent intervals. Nurses and doctors are trained and motivated to heal; giving medications like this, even at the end of life, had to be encouraged, demanded, and supported. I conveyed my support and appreciation to them. They needed it as much as I did. This is a facet of care we all need to be aware of. Even with an order to give it, those medications had to be requested; once that was clear, and a schedule had been established, then it getting them happened with greater certitude.
An advocate for a person with an advance directive needs to be closely in synch with the person they have agreed to do this for, with caregivers, and with doctors. It is not an easy job. It can be painful. And it has to be done, if trust has been placed in you to do it. As an advocate, I had to translate Mom's wishes into the specifics of her care for those caring for her.
Advocating fiercely for strong, supportive, palliative relief is vital. You must know what you are doing and do it vigorously and fearlessly.
It's crucially important for each person to go through their own individual process. No two are alike, just like people. Seems simple, doesn't it? It's not. Observing my Mom going through the different stages, making the transition to the final stages was a wonder and a privilege. She didn't get snuffed out prematurely. Her personal journey to death was not derailed. She had protection, support and dignity to go in her own way, figuring it out as she arrived at each station and went on to the next one. And it was so awesome, (filled with awe) to be fully present and to be part of it. Dying, like living, is conscious work. Support for that work is vital.
There are mysteries in the process of dying we do not know. We may have glimpses. Some exits are more painful than others. Each person has to make their own choices in their own way. The right to make those choices must be preserved.
Being with Mom as she went through her journey to death gave me a unique opportunity to know her in a new capacity, previously unrevealed and unexplored in her last days and hours. She was so direct, dignified, gracious, sweet, determined; all of her life qualities were present in her dying, transformed to this last and most important task and still very much her.
About pain management. Yes there are laws enacted for pain relief. But as with any other law, without vigilance and enforcement, knowledge and application, they may not have the intended impact: relief of extreme pain. I had to fight for Mom's pain relief. That really surprised me; I thought it would be so obvious. It wasn't. Once that was done and understood, then administration of medication was better. But know there is much work to be done on this front.
Surround yourselves with those who know who you are, what you want and who will help you get it.
There is a deep mystery to dying; it's unknowable and yet vaguely familiar. I am in a suspended state now, and feel as if I will be for several days. I am listening, being quiet, being present on this plane and on others I am just coming to know. I am breathing. How remarkable, breathing. One takes it for granted and then a whole new dimension comes and makes you aware it is there.
Love to all of you. Sue Hodges
Copyright © 1999 Sue Hodges. All rights reserved.
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