Doula for the Dying

 
 
I appreciate what this particular death midwife is saying. "It is not mysterious or grandiose ... bottom line, you're just visiting someone ... at a very scary time in life."

We just do it. We visit; we attend to needs. We show up. That is basically it. We show up with our particular gifts and are ready to share and give to the family according to their needs. We are present for what unfolds.

If you feel called to attend families through the dying of their loved one, I hope you will explore it. We all start at the beginning and may we all stay with the humility of that first step. We are there to provide presence first and foremost, everything else is gravy.

I want to encourage those of you who know you are death doulas, but have not claimed it yet, to step in the shoes and begin walking in them. The mystery of it all lies all around us; but as the midwife above states, it is not in the showing up.

 
 
 
We never know how someone feels about something until we do.

16 years ago I went to our local humane society and adopted an adorable white and black long haired cat; we named her Alice. My daughters were 2 and 4 years old and I was married to their dad then. We have so many stories and I have a love for that cat that is pretty amazing since I never really liked cats before then.

In between now and then, there was divorce, other animals, life, change of homes and through all that Alice stayed with my daughter's daddy. When he called me in tears the other night that Alice had died, my heart sank. The day before I was under the dining room table with her, crying my eyes out, as she lay dying. I was not surprised when he called.

What I am surprised about is when I went over there later to be with him, my daughters and Alice, our conversation turned into one on home funerals. We were talking about everything imaginable about death before this came up but when it did, it was on.

So now, after all the discussion of laying each of us out in the living room, in a hand painted, decorated cardboard casket (from Costco for 150$), and all the songs and such that we wanted, it's clear! Each one of us wants a home funeral. We want to be loved and cared for by each other, not strangers. We want to be the only ones touching, bathing and moving each other. We want the greatest care and tenderness and that can only come from someone who loves you. We want what Alice had.

Over the next few weeks I'm going to record our home funeral arrangements. Thank you Alice, my beautiful sweet Queen.
 
 
I belong to Hospice Community Forum and just had a discussion with an “11th hour volunteer.” An 11th hour volunteer is a person who sits at the bedside of the dying, usually when death is imminent or within 24 hours or so. They are very much akin to a death doula.

Well, he brought up the issue of creating a peaceful environment, which can be especially challenging in a nursing home. To all the nursing homes out there, most of you do a great job … but, there are some situations that nobody should have to endure, especially when he is dying.

‘Keeping the peace’ in the room of a dying person is paramount. I have found that there is a certain level of noise that is acceptable in any public place and nursing homes have theirs as well; and, it is far different than what should be happening at a death bed vigil. I have had a lot of luck asking for the roommate of the dying to be moved if they are loud, need loud TV, or in anyway disturbing to the dying and their family. If the roommate is not willing to change their behavior or go to another room for the interim, the nursing homes I have dealt with have been willing to move the dying and their family to a private room.

Along with physical comfort, environment is so much a part of a peaceful passing. That’s why we are there–our presence blending with theirs. In a perfect world we would all get to have loving, peaceful surroundings. What brings me joy in this work is that I am part of creating that. It may not be what I wish it was, but I know that I’m part of the solution in bringing as much calm as can be.

Sometimes a nursing home may need a little nudge in peacefulness. I have had luck putting up a sign on the door to knock softly and keep the lights off. It is amazing how much a little sign will do. Also the family can inform the charge nurse that they want nobody coming in the room unless to provide peri care or room cleaning. If that is not enough, ask for a doctor’s order for this. Ask the staff to help you. Ask each person you see to be proactive in helping you give your loved one a peaceful death. Look them in the eye and ask. Most of them will love to be part of caring in this way.

So now the roommate is quiet or you are in a room by yourself, but the lights flashing from the TV may be disturbing depending on the person. Would you want the news on if you were laying there dying? or The Price is Right? or The Jerry Springer Show? I’m serious. Remember that hearing is the last sense to go and your loved one is being affected by all the energy in the room, whether it be flashing lights, hearing, smells or emotion.

Some other things: make sure soiled bed pads and briefs are out of the room immediately; apply your loved one’s favorite scent on them or in the room somewhere; play favorite music; play books on tape. My suggestion is to have some type of soft sounds–the ocean, forest or river noise–something to drown out the noise of the facility. It won’t do it entirely of course, but it may help.

Please remember that the nursing home is it’s own little world and anything that you want to be different, you are going to have to be very proactive about getting. Most people who work in the nursing home want to please you and care for your loved one too. Very caring people are drawn into this line of work and are very deeply affected when someone they have cared for is dying.

If you have experiences in how your loved one was able to have a peaceful death in the nursing home, please let me know. What did they do or you do to make it so?
 
Death Rattle 02/21/2010
 
Most of us have heard this term. It is the noisy rattling sound that a dying person makes that can be very disturbing to hear.

Death rattle happens when secretions gather in the throat because the person is too weak to swallow. The gurgling sound happens when air passes through the secretions upon exhale.  This doesn't necessarily mean the person is having trouble breathing.

There are things we can do to minimize this. There are standard medications to use that dry these secretions. Repositioning the person is very effective. Sometimes in repositioning, secretions will come out of the nose or pool in the mouth. Suctioning them at this point will provide comfort and relief for the family.
It is distressing often for the family to hear this. People fear the person is drowning or will choke to death. This is not so.

It is one of the final things that happens. Know that when you hear this, death is usually imminent, but this phenomenon can also happen days before death. It does not always mean within hours; just know that death is not far off.
 
 
As a person nears the end of life, there are some very basic similarities that may be seen which cross the type of illness or 'reason' for dying. Below is a list of some of these behaviors. Usually, the closer to death the more pronounced the symptom. Simple to complicated, easy to difficult, know there is always something that can be done to relieve any suffering that may accompany any of the following:
  • Lack of energy
  • physical weakness
  • loss of interest in things that are important
  • withdrawal from loved ones
  • increased sleepiness
  • gazing or staring, as if right through you
  • confusion
  • restlessness
  • loss of appetite
  • difficulty swallowing
  • incontinence
  • temperature fluctuations
  • loss of color
  • breathing changes
  • increased pain or beginning of generalized pain
Dying is a process. This final stage of living may come on swiftly or slowly, but however long it takes, be it days, weeks or months, it is usually predictable. Not everyone will have all the manifestations of course, as each person's death is as unique as a fingerprint.

What I do hear most of the time is the question, "why is this taking so long?" It just does ... unless it doesn't. There are definitely no absolutes regarding any of this other than our heart will stop beating and we all will take our last breath someday. Until then, enjoy!
 
 
There is a phenomenon called terminal agitation, which may occur when a person is near the end of life.

It may look like this: picking in the air, taking off one's clothes no matter who is around, trying to get out of bed regardless of safety issues, wanting out of bed and then wanting to go back to bed within 5 minutes, among many other "fidgety" and "restless" behaviors. There may be yelling, moaning, crying and hallucinations. The person is not satisfied regardless of the family's attempt at soothing or providing what is requested.

This is agonizing for the family and this behavior has many possible causes and may take a long time to remedy. It can make otherwise reasonable family members angry and distraught. Know that if the person could change this she would. Nobody who is aware of herself and could do something about it would continue it.

With very difficult cases, strong medication is needed and families sometimes have much trouble with knowing their loved one will be sedated. Sedation vs. agitation. Think about what you would want.

I wrote a more in-depth article on the Quality of Life Care webste titled "Agitation vs. Sedation"


 
 
I found a cassette tape under a bunch of papers and put it in my recorder that barely works. This is where it began:

(regarding the 'hole' inside of us or the empty space inside when we lose someone precious to us) " ... no longer a fearful place ... There is peace emanating from it. Whenever a death occurs, wherever a life form dissolves, God, the formless and unmanifested shines through the opening left of the dissolving form. That is why the most sacred thing in life is death. That is why the peace of God can come to you through the contemplation and acceptance of death ... "    -- Eckhart Tolle, Stillness Speaks

 
 
When someone is dying a natural death, there is a breathing pattern that usually happens. It goes something like this: a deep breath or 2, then holding it, followed by a shallow breath or 2, and so on. It is an uneven pattern of inhales and exhales. It can be scary if you don't know it is coming.

Another thing that happens is as the person gets closer to death, the time between inhales widens. When breaths are towards 20-30 seconds apart, death may be happening very soon. I say "may" because there is always someone who may have this breathing pattern and live much longer. Overall, breaths will be getting more shallow and the time between inhales will space out.

There are exceptions to everything, but generally this is what you will see. Of course right now I want to tell you all the ways it could be different and how many ways breathing can look even with the above very general guidelines. The best thing to do is when you are going through this time, ask your hospice doctor or nurse about it and ask them to show you what you will be seeing. I do this with the people I care for. I show them some ways it can look and when it happens, they aren't as startled.

The pattern is called 'cheyne-stokes' respirations.

" ... Cheyne-Stokes respirations refer to a rhythmic change in respirations wherein breathing becomes shallower and shallower variably with a slowing in respiratory rate that culminates usually in complete cessation of breathing for several seconds to more than a minute. This is followed by progressively stronger respirations that become exaggerated and quite deep. This pattern is thought to result from abnormal brainstem responses to CO2 levels in the blood - initially undercompensating and then overcompensating. Cheyne-Stokes respirations can occur in other nonterminal disorders such as heart failure and stroke. It is interesting to note that patients who are able to speak generally say that no distress is associated with this breathing pattern. From this we may extrapolate to dying patients, who usually cannot speak with Cheyne-Stokes respirations, and presume that the syndrome is not disturbing to the patient. However, family members and clinicians may assume or project distress into this syndrome and thus often need to be coached. I usually explain that the pattern results from a breakdown in "cycling" between the lungs and the brain and that, as far as we know, it is not bothersome to the patient ... "            Palliative Care Perspectives-- James L. Hallenbeck, MD

 
Tell a Story 12/18/2009
 
When a person is dying, she is retreating from everything outside of her. She has little energy for anything outside of what is going on in her internal world.

She cannot respond the same to conversation. It takes much effort to answer questions. To engage someone in the normal back and forth conversational style can be overwhelming for her. Instead, tell a story. Tell her what you did today or whatever is on your mind. But don’t ask questions. What she has energy to tell, she will. Do not be concerned if she does not respond to you the way she used to or even with a hint of a smile. She cannot.

It is not about you. Just keep talking to her if you want to verbally connect. Otherwise, your presence is enough.



 
 
When a person is approaching the end of their life, things outside of them begin to lose appeal. You will start to notice they are not doing some of the things they have enjoyed over the years. They begin to not want to see people. This is not to be confused with depression.

For the rest of this article, put the illness of depression aside. What I am talking about here is the 'going inward' of a person who is dying. The person may be depressed as well, or has fought it their whole life, but this process is outside the realm of depression.

What is happening is their focus is now internal. We believe this is the busiest time of life. They are doing what we call 'life review,' and they are preparing for the ultimate journey from their body. It may appear to you they are depressed when they are refusing guests, activities or watching their favorite show. They are not. The closer they are to their death, the more you will notice the withdrawal.

When you see this, know they are working out their lifetime. They are looking back over their life intensely. What this may look like is a strong need to tell you stories and share pictures. You may start hearing about people and incidents that you have never heard before ... and they will be sleeping more.

When you begin to notice this process is happening, what you do to support them now is to sit down and listen. Don't change their story. If they are telling it with the wrong details, etc. let them. The gifts to give right now are time and your listening ear. Priceless.