Lessons Learned from Fran – Dying Well

Lessons Learned from Fran – Dying Well

I knew Fran for over 30 years.  She was a dear woman but somewhat cat-like in that she was reserved and self-contained.  For all those years that I knew her, into her 80’s, I never saw her without full makeup. Her hair was always meticulously styled and she dressed stylishly even when she was not planning to leave the house.  Her husband had died years before she began to falter under the weight of several life threatening illnesses. When she was told that she had little time left, she set about finalizing her plans for dying and death. I volunteered to help her, ferrying her to appointments as she set about her formal planning.

Her final actions were as follows:

1. She met with her attorney to review her will and other previously prepared documents.
2. She interviewed for an in home hospice care provider and chose the one she liked best.
3. She gave the hospice care personnel her wishes for her final days when she would not likely be able to communicate them.
4. She chose her lovely bed and bedroom as the place in which she wished to spend her final days.
5. She chose to have a urinary and a fecal catheter because she did not want, as she said, “the indignity of someone cleaning my bottom.”
6. She wanted adequate pain meds because she could not see the sense in, as she said, “undue suffering.”

I stayed at Fran’s home with her for the last four days of her life.  There was round the clock hospice-nursing care during that time to administer pain medication and general care of changing and bathing her.

People have asked why I chose to stay with her.  I did it to honor my friend and I did it to learn from her. As I had learned much from her in the 30 years before, I knew that I would receive many lessons from being in her presence as she died.

Fran did not speak, eat or drink the last four days.  In retrospect, because she was mute, I presumed her to be unconscious.  I’m pretty sure she was aware of her surroundings at least part of the time.  Caregivers admonish us to treat the supposed comatose individual as conscious because they may well be aware.  It is hard to remember that at the time, however.

I learned a lot from watching the hospice aides in their work and care of Fran and from the interaction of friends as they visited her room. Overall, I think Fran would have been pleased with her last days (or was, it was hard to know if she was aware since she did not speak).  I felt good when I was empathic and intuited some of what she needed to make her confinement more peaceful, comfortable and beautiful. But it bothered me when I realized that I had not been thoughtful of some of her needs.  Some things I should have done or not done occurred to me then and other issues became clear only in thinking days and weeks after her death.

The Lessons:

1. Make your plans for your final days as far in advance as possible, even in your 20’s.  Wills, Living Wills, Advanced Directives, Medical Proxies are best put in place as soon as you can.  This action assures that your wishes are followed.  By making the choice to have your affairs in order you have taken a great burden off your family and friends.
2. If you do not choose palliative care or hospice for your end of life care you will likely end up in a hospital and will be put through invasive and painful procedures which will rob you of dignity and peace.
3. When in the presence of a comatose or dying patient, speak quietly unless you are told that the person is hard of hearing.
4. Even if you think someone is unable to comprehend, they may actually hear everything that you say, so continue to identify yourself to them and continue to converse with them.  You can verbalize your inner monologue such as what you were thinking to fix for dinner or what errands you might run.  Another good way to let the person who may they have their eyes closed and would not otherwise know that you are there if you do not speak, is to read a book to them. This lovely gesture was done by Fran’s stepson.  He picked a book that he and Fran had both enjoyed.
5. Explain what you are going to do and why you are doing it to the person before you carry out the needed task.  Example: “In a little while we will come in to change your bed.” Then wait a bit and come back to it, reminding the person that you have come in to change their bed or whatever task is at hand.  It seemed helpful to talk through each step of changing or moving just before the step was carried out. Ask the person to help you with the movements if they can.  Then carry out each step slowly and incrementally so that they are neither hurt nor frightened.
6. Have someone stay in the room with the dying if possible.  If they awaken or become conscious they may be frightened.  Frankly it occurred to me that the dying may not know if they are alive or dead so knowing that there is someone there who cares about them would be an amazing comfort to them.
7. Touching has gotten such a bad name.  It can be uninvited, intrusive and irritating so most of us do not spontaneously touch anyone any more.  However it can also be incredibly comforting. Babies who are not touched may die – due to a condition known as marasmus. An older widowed gentleman my family once knew, brought a copy of a Reader’s Digest article which said that humans needed 13 hugs a day. He was lonely and craved human touch.  So if it feels right to do so, patting the hand or arm or brushing the person’s hair might be an appreciated gesture.
8. Do not sit on their bed.  Bouncing the bed and causing quick movements could be frightening. Having a close-by easy chair in which to keep vigil is a good idea.
9. Arrange the furniture to accommodate the flow of visitors and caregivers.  Take out furniture that is in the way.  Fran’s bed was a queen size making it difficult to change her and the bed linens.  It might be better to rent a hospital bed, unless the dying person specifically wants his or her own bed.
10. Because Fran had always wanted order and beauty in her home as well as on her person. Fran had laid out lovely, lacy, colorful gowns into which she was changed each day. I also set about to keep her sick room as clean and uncluttered as possible.  Medical supplies placed haphazardly by hospice workers were moved into nearby drawers and an adjacent room.
11. I placed potted non-scented flowers on the dressers at eye level so that if Fran opened her eyes she would see lovely colors but not be overwhelmed by intrusive scents.  Gardenia is an example of a lovely flower with a scent some people crave but which makes other folks gag.
12. Fran was a skinny little gal.  Something I didn’t think of at the time was that her bony parts must have been uncomfortable, lying on that flat bed.  For comfort, egg-crate mattress covers are good for relieving pressure while lying in one position for a long time.  Hospital supply stores have strap-on cushions for bony prominences such as heel pads.  Sheepskin pillows of various sizes, not over-stuffed would be nice for support and cushioning of the body.
13. While cognizant of their surroundings, the person can choose to have more people in the room visiting, if they so wish.  Once they are unable to communicate, it would probably be a good idea to limit visitation to one visitor at a time (plus perhaps an attendant).  The tendency is for persons sitting in vigil to begin their own conversations as if the dying were deaf, uncomprehending, or not even present in the room.  In dying as in living, it is rude to exclude on person from the conversation.  I learned this lesson, I’m sorry to say, from a definite oversight on my part.  As a neighbor and I conversed, Fran became agitated and made a sound consistent with significant frustration.  In thinking about it later, her message may have been, “Hey you two, I’m still here!! This should be about me.  I’m dying – don’t discuss essential oils.”

Fran’s presence was a gift to friends and family.  The lessons learned from her insight and conscious death are a gift to all of us.  Please share her wisdom and experience with those facing death… which, by the way, is all of us.

[Written November 1, 2012]