__In providing emotional support, we are helping to create a peaceful environment. Emotional support is the essence of our presence. During our entire walk with the dying and their family our presence is one of the most stabilizing gifts we can offer. They called us because they need extra support and our presence provides this extra sense of security. We may not do a thing except provide this kind of emotional support. This is the foundation.
There was one family I attended that wanted me to sit in a certain place when I was in their home. Each time I arrived, I was guided to a particular chair and it was pretty clear that that was my place. I just did it and didn’t ask why they wanted me to sit in that spot. This is just one small example of something that was important to a family.
This article is for those people called to be a doula for the dying.
After someone has died, I encourage the family to take as long as they need to be with their loved one. I encourage them to wait before they call hospice and have as much private time as they can now because once you call hospice, action begins to remove the body.
There often comes a time after the death where people start wondering what to do next. Remember to have the death plan and funeral plan completed before hand so you can guide them during this time.
Offer to pray with the family prayers of peace and love and gratitude for the departed and consolation for the family. Ask them if they would like to bathe the body and dress them in a piece of favorite clothing. Maybe they don’t want to participate but would like you to do it. Usually at least one person wants to be a part of it if they want the body bathed.
Remember to turn off the oxygen concentrator if it is on and get rid of as many hospital and medical looking supplies and devices as possible after death. You’ve already done this to an extent during vigil but there may have been some things that you needed to keep. Now is the time to get rid of all it within eyesight.
If they don’t want to bathe the body fully, check the peri area of the body and make sure it is clean and no stool or urine has released. If it has then clean the area and take out the soiled briefs to the outside trash immediately and/or put the towels to launder.
Encourage anyone to lay with the body if they want to and give them the privacy for this. There are people who want to but need the ‘permission’ to do so or think others would think they were odd if they do it. Let them know it is normal to want to be close to our loved one, especially since they will not be seeing them physically again.
There are some faith traditions that do not believe in touching the body after death. Find out before hand what your family believes in. If it is a matter of discomfort with a dead body rather than belief in holding down the person’s spirit, then help them move pass that discomfort. So many people have thanked me afterwards for helping them to touch their loved one’s body.
Flow with what is going on and what they want. They truly may not feel equipped to make any decisions and in that case, you lead the way. You will know when you are there how to proceed. Pray for guidance, follow your gut.
When you have called hospice to come and pronounce the death, know that you can also ask them that you want to spend as much time with the body as possible. The best time to arrange this is before death. As we discussed in Section 1, it is best to know how long the state laws and how long the funeral home will allow before they pick up the body.
If the family is doing a home funeral, then all this will have been arranged, but if the body is going to go to a funeral home or crematory then this information is necessary so the family can prepare themselves for how much time they can spend. Most people I have been with only want to be with the body not longer than 2 – 4 hours. There have been some that have wanted it for several hours and I had to make arrangements with the funeral home or call to various ones who would accommodate the family.
I understand why many of us feel lost when we are in the hospital during the days of trying to find out what is wrong; we are trying to make sense of how extensive the disease process is, surgeries, conflicting information etc. I know sometimes we have great to mediocre guidance and sometimes we have none.
But, I don't understand the attitude of a nurse we dealt with recently to our request for getting Medical Power of Attorney and Durable Power of Attorney forms for a friend of ours who is in the hospital. She seemed like we were inconveniencing her but I ignored it at first. Then when another friend asked about living will forms, the nurse became upset. She said, "Do you all even know her prognosis? I don't! The doctor hasn't even told me what is going on! Why are you doing all this now? This is end of life stuff."
This nurse is working in a major hospital on a cancer floor. My friend has advanced head and neck cancer and is very young. She will be having major surgery tomorrow that will last several hours followed by radiation and chemotherapy as soon as possible. This nurse was actually an impediment to getting my friend's affairs in order. She was actually guiding us to sit back and wait for ... what?? What are we supposed to wait for?
Even if you are going to have shoulder surgery, have your advance directives in place. All of us should have them already done before anything even happens. You never know if you will be in a car accident, have a stroke, fall, whatever. Have your medical power of attorney and your durable power of attorney in place and your wishes known in writing in a living will. We need someone to talk for us and handle our affairs if we cannot, however temporary.
The nurse said a lot about hope and how talking about all this would take my friend's hope away. I told her politely that we told our friend the truth, which was not that she was doing this because she may die tomorrow in surgery (you don't need the medical and durable power of attorney when someone is dead, just when they are alive), but that she may be mentally out of it for awhile and things may need to get done and decisions made until she was herself again.
Being responsible does not mean we are taking hope away. This nurse is influencing many families and guiding them down a path that will lead to a lot of unnecessary situations. Assigning a medical and durable power of attorney doesn't mean someone is approaching death, although that is when we usually do it. These forms are for when the person is alive but unable to speak or do for themselves in the moments of time when decisions need to be made. This could be a transient thing or permanent, as in approaching death.
I have mine done and I'm not having surgery or dying. My hope is that anyone reading this will do the same. It makes sense and you will be glad you did. You will make a scary time for your family easier in at least a few ways. It is the kindest thing you can do for the people that love you.
My mom didn’t want to talk about dying. She was diagnosed with cholangiocarcinoma the Thursday after mother’s day 2005 and was dead the Wednesday before father’s day. I was in a whirlwind—just focused on caring for her. We didn’t have the conversations of missing each other, or sharing the sadness of what was happening. I longed to talk with her but I couldn’t. She didn’t want to. She had always been a very private person with her emotions.
We did have 2 brief conversations that acknowledged what was happening. During one, she asked if ‘it’ was going to hurt. It, I understood, was her dying. I told her that it wouldn’t, I would make sure of it. She asked me if she was going to have a hard time breathing. I told her no because I would be there by her side during the whole time. She turned her head and I knew the conversation was over. As painful and shocking to me as this conversation was, it gave me comfort to know she knew what was happening and she trusted me with her dying.
In the next few weeks much happened, alternatives therapies sought, doctor’s visits, people visiting, her fast decline. About 10 days before her death, as we were coming back from an incredibly frustrating doctor’s visit, she said when we got in the car, ‘he’s uncomfortable with dying, isn’t he?’ I told her yes. She asked me if she’d be here in 3 months. I said no. She asked if it’d be 2 months. I told her no, that I’d be surprised if she would still be alive in 2 weeks. She told me then she would start hospice.
I thought my heart was being ripped out of me. Those 2 conversations were the extent of our talking about her dying. There were no beautiful goodbyes like the ones I have seen and heard in other families. There was loving caring for her though. We loved on her, fed her, soothed her, and made her room beautiful with sound and smells and lighting. We were always at her side, lying with her, sitting next to her, making sure she had everything she needed. My goodbye to her was in my caring for her.
I guess my thoughts today are on all the ways we can acknowledge our goodbyes or the expressions of it. It may not look like the wonderful stories we hear. That is OK because there are people who are not able to share in that way. Another thing to remember is most of our communication is nonverbal, especially during this time. My hope is we can accept what goodbyes we do experience and know that it is the best that can be had at the time.
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?
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!
Hi, My name is Deanna Cochran. I am an end-of-life doula to families who are living with someone they love during their last days. I assist with medical, practical, emotional and spiritual needs as they arise. For more information about me. about Deanna
RSS Feed