Ask A Death Doula
How Dementia Presents at the End of Life

How Dementia Presents at the End of Life

January 19, 2022

Big Ideas:

  1. Defining Dementia and Alzheimer’s [1:35] - Dementia is a general term for a decline in mental ability severe enough to interfere with functions of daily living. Alzheimer’s disease is a mental decline that shows up first as loss of memory function and is a form of Dementia. Brain lesions, called amyloid plaques, accumulate causing a declining ability to cope as brain cells die. It is a neurodegenerative disorder. People can live an average of 7 to14 years after the initial diagnosis. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases. It is the most common form of dementia among older people. Approximately 4.5 million Americans suffer from this disease, which usually begins after age 60. Alzheimer’s disease cannot be cured and is a tremendous burden on caregivers. It is 24/7 care psychologically, physically, and economically. The world population is aging rapidly and there will be more of a prevalence of chronic disease issues as a result – both cognitive and physical. The average life expectancy is currently 81 – medical and scientific advancements could soon push this well into the upper 90s or even past 100. The longer we live, the more likely it is that we will experience chronic issues. Dementia is one of the most difficult chronic conditions to deal with for families (on many fronts). As practitioners, we have to be aware of what those families have most likely been through caring for a dementia patient before we show up for the end-of-life portion of the disease process.


  1. The Signs of Dementia [4:09] – There is no definitive diagnosis for Dementia. It is most commonly marked by short-term memory loss. Forgetting where you parked the car, forgetting where you put the keys, or what you ate for lunch today are little things that can indicate early onset. Long-term memory tends to stay intact. Safety is always the most important thing to consider regardless of disease process – it is especially important with dementia patients. It is vital to plan ahead so that they don’t end up in dangerous situations due to the condition – put safety measures in place. After memory, the next declines tend to occur with their emotions and inhibitions. Dementia patients can become labile – you will see a reverse presentation of how the person was in their life. For example, someone who was sweet and affectionate can become verbally abusive and combative (and vice versa). It is important to remind the family and loved ones that it’s not them, but rather the disease that is causing these behavioral changes.



  1. Dementia Requires 24/7 Care [8:04] – This disease is typically psychologically, physically, and economically draining on the patient’s family and main caregiver. There is an underlying perpetual crisis with dementia. The indications that someone is experiencing their end of life take place over years with dementia – as opposed to months or weeks with many other disease processes. A rapid decline in food intake that is leading to a measurable level of weight loss is the strongest indication that a dementia patient is entering their end-of-life phase. It can be difficult to keep Hospice services for dementia patients if there is no measurable decline in their condition. Other indications that someone is in decline is if they are: sleeping most of the time, talking to people you don’t see, incontinent, not eating a lot. Before they reach the final phase of this disease, patients will get up and wander and there are safety issues non-stop – it is one of the most burdensome diseases for the caregiver. By the time they are admitted to Hospice, it is now an end-of-life scenario, and the presentation is very different. As a Doulagiver, don’t think you need to know everything about an active Dementia/Alzheimer’s disease process – by the time you get there, they will most likely be bed-bound and very weak compared to the earlier stages of the disease.


  1. S.E.D. [16:30] – V.S.E.D. stands for Voluntary Stopping Eating and Drinking. Organically at the end of life, the swallowing reflex turns off – it is inevitable that one day the end-of-life patient will no longer be capable of swallowing. This is the first tell-tale sign that they are transitioning and is also a major safety issue. VSED is the conscious choice to take this measure earlier. There is a lot to this – we will have a full podcast episode dedicated to the topic and there is a resource for you below to read. You can request not being fed in your Advance Directive if for whatever reason you can no longer communicate due to dementia or another disease process or injury.



  1. Tips for Caregivers of End of Life Dementia Patients [20:30] – As practitioners, we know this is a hard disease to care for – we want to be sensitive to that and show up for the caregiver. They are usually burnt out by the time we, as Doulagivers, become involved in the process. Rotate respite care for the primary caregiver so that one person doesn’t shoulder all the burden – let them be present in this last moment with their loved one. Have meals delivered to them and make sure they are eating, drinking, and getting adequate physical activity and rest. Caring for the caregiver is so crucial when dealing with dementia.

Memorable Quotes:

  1. “Having an Advanced Directive is the best way to plan ahead to protect your wishes in the event of developing Dementia and/or Alzheimer’s.” – Suzanne B. O’Brien RN


  1. “We have an Eldercare Crisis that is only projected to increase for decades to come. We don’t nearly have the set up to care for them. At all.” – Suzanne B. O’Brien RN

Resources: GET THE FREE  Death Doula Guide HERE

VSED Resource:

AD for Dementia and Alzheimer’s – refusing food and liquids

The rising prevalence of dementia is a global emergency


Rate & Review the Podcast, leave a comment and please SHARE with a friend!

xoxoxo Suzanne


Pain Management at the End of Life

Pain Management at the End of Life

January 19, 2022

Big Ideas:

  1. There are two different types of pain [1:49] – Both types of pain require different treatments to control. Somatic pain is the most common type that requires narcotic medication to treat. Nerve pain is the second type of pain. Narcotic medication does not work in the treatment of nerve pain, and it is often missed. Nerve pain requires nerve medication – gabapentin (also known as Neurontin) is the most common medication used for never pain management. Stabbing or burning pain, often localized in the feet and head is indicative of nerve pain. Quality of life for patients is directly related to pain management.


  1. The Hospice Comfort Kit [7:30] – Hospice provides a comfort kit for family caregivers filled with the most common medications used at the end of life to manage pain, breathing difficulties, and other common causes of discomfort. Have this comfort kit within 24 hours of the patient being placed on Hospice. If you encounter a need for medication to address pain or breathing issues and you do not have it available, it will lead to a stressful (and avoidable) situation for everyone. Once on Hospice we know there is going to be a decline in patient condition – but we don’t know at what rate the decline will occur. Being prepared for this decline to happen quickly is essential. Pick one person in the family that will be in charge of administering medications – this should be whoever is most comfortable doing so. Have the Hospice nurse go over the medication in the comfort kit with the caregiver and practice administering medications and understanding the comfort kit on each visit until it is well understood. Trying to figure out what to use and how to administer it during a crisis situation is not the way to do it.


  1. Understanding the Pain Scale [11:16] – The pain scale is typically assessed by 1 to 10. 1 is no pain and 10 is the most pain a person can possibly be in. Pain is subjective. Pain needs to be kept at a 4 or below for optimal quality of life each day. When pain is going up, you have to stop that pain on its incline or control it because if it gets too high it will be almost impossible to bring down – this is how the human body works. Patients will sometimes hold off on taking medication until they really need it because it is something they still have control over, but it is too late if their pain is already too high. Assess their pain regularly and keep a logbook of their pain levels pre-medication and 45 minutes post-medication. You can’t take medicine out of somebody, so administer pain medications incrementally until you reach a therapeutic space – defined as a 4 or below on the pain scale.



  1. Keep Track of Patient Bowel Movements [16:30] – This is important because narcotics are known to be constipating – they slow the stimulation of our gastrointestinal tract and our ability to have regular bowel movements. You want to get ahead of this problem as a caregiver. The patient should relieve themselves every one to two days for comfort purposes – it can turn into a crisis situation if they become constipated for an extended period of time. Stool softeners and laxatives should be included on the medication administration page of your Hospice comfort kit.


  1. Pain Management at the End of Life and Addiction [22:01] – There are many misconceptions about this topic and the lack of knowledge often leads to unnecessary suffering. Addiction often occurs in people who have a pre-disposition to it within their biochemistry or when a person abuses drugs recreationally to achieve a euphoric state – when there is no underlying pain to manage. At end of life, these should not be major concerns – especially because the medications should be controlled with the goal of keeping their pain at a 4 or below and assessing regularly. This person is going to have their end of life, and they’re either going to have it being comfortable and having their pain managed – or suffering and having a lot of pain. Pain management is neither going to prevent the end of life or hasten the end of life – it’s a question of them either being comfortable in this last phase of their life or being in pain and suffering in this last phase. Addiction is a medical condition that requires us to reserve judgment and lead with compassion. It is not a justifiable reason to withhold medication at end of life – keep the medicine locked away and control it to avoid issues. Our job is to be present, be loving, and to support this person at the end of their life – no matter what their past has been. Everyone deserves to be comfortable at end of life.


Memorable Quotes:

  1. “The rule of thumb for medication and pain management is that on a pain scale of 1 to 10 – 1 being no pain and 10 being the most pain somebody can possibly be in – you want that pain to be kept at a 4 or below.” – Suzanne B. O’Brien RN


  1. “We know that end of life is really hard on everyone. Everyone in the family is touched by end of life and all people are probably having different experiences.” – Suzanne B. O’Brien RN



  1. “Pain management is not about completely eliminating pain. It is about controlling it well enough so that it is not causing every second of every day to be defined by suffering and a lack of quality of life.” – Suzanne B. O’Brien RN

Resources:  – GET THE FREE DEATH DOULA GUIDE HERE: HEREpodcast graphic

PLEASE Rate & Review the Podcast, leave a comment and share with your friends!

xo Suzanne


How to Follow your Highest Guidance System

How to Follow your Highest Guidance System

January 6, 2022

How to Follow your Highest Guidance System

Big Ideas:

  1. How I Was Guided to Hospice [3:35] - I was raised in a medical family and always liked helping others as a child, so a career in nursing felt like a great fit for me as an adult. I was working in the hospital and kept hearing this calling and having this feeling that I belonged at Hospice. I had no professional or personal background with end-of-life care at the time – I knew nothing about it. I left a job with better pay, better benefits, and better hours as a single mother to follow my calling. I just decided to trust it. My first day visiting Hospice patients I knew I was exactly where I was meant to be, and that one choice has led me on such a beautiful and profound journey in my life.


  1. We Are Holistic Beings [6:10] – There are four bodies of energy that make up who you are as a person. Nurturing these parts of yourself will allow you to reach balance in your life. There are the physical body of energy, the mental body of energy, the emotional body of energy, and the spiritual body of energy.


  1. We All Have Two Guidance Systems Within Us [9:50] – The first guidance system is the mental/analytical/ego guidance – this is influenced by what we have put into our minds over the course of our life and is limited by our individual perspective. The second guidance system is our higher consciousness/spiritual/heart-centered guidance – this is always working on your behalf to guide you in alignment with your purpose in life. The key to finding your life’s purpose is to be aware of these two guidance systems, how they work (and why) – and how to listen to and strengthen your heart guidance. Answer your calling when it comes – it will open incredible opportunities for you.


  1. The R.A.I. Method [19:56] – This stands for Recognize, Acknowledge, and Integrate. You must recognize when your ego is influencing your actions and behaviors. Acknowledge your ego’s effort to influence you and understand that it is a fear-based element of your being. Take inventory of your life to combat this – ask yourself, “Am I happy? With the work I’m doing, with the people that are around me, am I contributing and am I making a difference?” We all want to contribute and make the world a better place at our core, and we must find our gift to do so and then share that gift with the world. Integrate your heart guidance system to lead you to that gift and ultimately align you with your life’s purpose.


  1. The Most Painful Experiences We Go Through Are Our Greatest Teachers [27:15] – Rejection is a gift that saves us from what is not meant for us. The people who have hurt me the most on my journey were my greatest spiritual teachers – even though I didn’t know it at the time. It can take years of growth, processing, and reflection to realize this from a new perspective and to reach a point of giving forgiveness for the pain you have experienced so that you can find the lesson with it. If you have people in your life that don’t make you feel good or that don’t life you up, think about letting them go – there are people that need you.


Memorable Quotes:


1) “We all are here for a reason. The meaning of life is to find yours and live that purpose.” - Suzanne B. O’Brien RN


2. “Right now, we, as a world for the most part, are suffering from spiritual bankruptcy.” – Suzanne B. O’Brien RN


Resources: – Get the Death Doula Guide Here

Rate & Review the Podcast: Please take a minute to review this Podcast and leave a comment! xoxoxo Suzanne

Live Authentically, Forgive the Past, & Let Death be Your Greatest Teacher About Life

Live Authentically, Forgive the Past, & Let Death be Your Greatest Teacher About Life

December 15, 2021

Hypnotherapist, Certified Death Doula and Author Roger Moore joins me on this episode…


Roger joins me on the podcast to teach you, how to create a future greater than your past. 


In this episode, Roger beautifully explains how everyone can powerfully and simply shift how you think to heal past wounds and let go of pain, guilt, and anger.


Imagine being able to have your future be ANYTHING you want it to be.

So go ahead and dive into this inspiring interview with Roger Moore. You’ll walk away from our conversation with:


  • Understanding how death education and awareness is our greatest teacher about how to live.


  • How forgiveness is the path to freedom.


  • Techniques to help free you from anxiety and live in the present moment.


Here’s to the greatest expression of yourself showing up every day!


Here’s a glance at this episode…

Big Ideas


The Impact that Hypnosis and our Thoughts have on Illness [6:00]

People don’t come to Roger at the end of life looking for a cure to their disease or illness, they come to him looking for a way to navigate their way through it and live better with it. Much of the work he does relates to stress reduction techniques and mindfulness techniques – focusing on hope and making the most of every moment they have left. This simple yet effective approach leads to amazing mental, emotional, spiritual, and physical healing in his patients.



Denial [8:15]

Many times, people at the end of life feel like it’s not okay to discuss their illness with family and friends. When we deny this conversation and the ability to have clarity on life’s journey, resolve issues, give, and receive forgiveness, or even just say goodbye, I love you, and thank you to people – it does a great disservice to everyone involved. Forgiveness of self is one of the biggest things for a person at end of life.


The Universal Language of Death [11:40]

People from all different cultures and backgrounds say the same or very similar things at the end of life. We’re all connected in our humanity and there is no judgment when facing death. When people who are close to death are saying the same things whether they are in Zimbabwe, Thailand, or a mansion in New York – we are fools if we don’t pay attention to that. Death is our greatest teacher about life. Universal laws and truths are very basic: presence, gratitude, compassion, kindness. Personal growth is painful, especially at the end of life. Our spiritual awareness is cultivated by how we choose to affirm or not affirm our life’s journey every single day.


Hypnosis [15:25]

We are always in a hypnotical trance. Hypnosis is learning how to take control of the trance that you’re in. It’s about being in the moment because despite anything else that’s going on – any illness, any world troubles – right now, in this moment, we are okay. It won’t stop the stressors from coming at us, but we can handle the stressors much better when we’re calm and relaxed. We’re overstimulated from every direction with anger and negativity in today’s world. Take charge of the energy you consume to have a more fulfilling life. You play offense and defense every day with your energy. Learn the techniques you can employ every day to calm your nervous system. We are the only ones in control of what we do and don’t let in. Recognize what you’re in control of – many things we are not in control of other than how we respond to them. Ask yourself if being scared, anxious, or living in fear is helpful to you. Ninety percent of what we worry about never comes to fruition. What can bring you joy in this moment? Try to live every day like it’s one lifetime. Set an intention in the morning of wanting to be present and wanting to be of service. One day will truly be the last day – don’t allow yourself to be able to say you didn’t do, say, or be, everything you wanted.


Becoming the Greatest Expression of You [24:33]

Create your future to be greater than your past. Remove your limiting beliefs, stop reading your old script, and start writing a new story. Learn from the wisdom of your past but make your next moment better than the past. Find joy in this moment and every moment. The most challenging things we’ve been through can also be our greatest gift. You have a choice to allow your trauma to define you or to release it and allow your life to be anything and everything you want it to be. Show up every day and be the best version of yourself. The goal is to gain rapport between our conscious and unconscious minds – to integrate all parts of ourselves and exist in harmony.




Memorable Quotes:

“At the end of life, time is never on our side.” – Suzanne B. O’Brien RN


“I always say when I’m working with people at end of life when they’ve had these energetic shifts of forgiveness – I say, ‘why didn’t this happen twenty or thirty years ago?’” – Suzanne B. O’Brien RN


Resource Links Mentioned in This Episode:

Becoming the Greatest Expression of You – Get the book

Get The Death Doula Guide:Here


Rate & Review the Podcast

Reviews for the podcast are greatly appreciated! They help us build awareness for the show, which in turn allows us to bring value to more listeners like you. Not only that, but they help us better understand what matters the most to you so that we can constantly improve. If you received value from this episode, it would mean the world if you could take a moment and leave your honest rating and review or share it with your friends!




Join Membership & Training Site Community by Suzanne B. O'Brien RN Membership and Training Site


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Ask a Death Doula Podcast: Death and the Spiritual Body of Energy

Ask a Death Doula Podcast: Death and the Spiritual Body of Energy

October 25, 2021

in this episode of ask a death doula, I will be talking about one of my favorite subjects the spiritual body of energy and death.

It has always amazed me from the time that I was a very young Hospice nurse the universal language of death, the common themes that would reoccur with my patience from all different cultural backgrounds and religious backgrounds. I would be seeing many of the same things and they would say many of the same things as they headed towards the end of life.

This universal language of death brought me great comfort, healing, an inspiration. I hope that it does the same for you.

We know that death is the number one fear in this world at this moment and I ask you this- does it need to be? Or can death be the greatest teacher that we have about learning how to truly live?

In this podcast I will talk to you about what I have seen at the end of life what my patients have said, and I hope that you too find great comfort healing and inspiration that is there for us all in this space.

In Love and Service,

Suzanne B. O’Brien RN

Mentioned in this episode: Elisabeth Kubler Ross Foundation EKR Education FALL 2021 SERIES: Death and Spirituality: On Life, Death, and Life after Death. 8-week course. Starts on October 21st. More Details: Click here:

★ GET THE DEATH DOULA GUIDE ★ Your step by step guide to learn, launch and grow a successful Death Doula Business. Click Here:

✉ JOIN MY FREE TRAINING AND MEMBERSHIP SITE ✉ This is a community-supported group hosted by Suzanne B. O'Brien RN, founder of the International Doulagivers Institute for training those who want to be professional End of Life Doulas, Doulagiver Practitioners and for anyone wanting more EOL education Join Here:

Ask a Death Doula Podcast - Meet Death Doula Jane Whitlock

Ask a Death Doula Podcast - Meet Death Doula Jane Whitlock

September 23, 2021

Jane Whitlock is the new Integrative Care Specialist/End of Life Doula at Providence Place Senior Living (Minneapolis, MN)

Jane will be working with the folks on hospice as well as other residents in need of her services. As an end of life doula, she specializes in talking with people about their fears, and hopes as they face their deaths. In addition, she will be offering integrative therapies such as essential oils, hand and foot massage and guided imagery to all. Previously, she was a middle school teacher, hospice volunteer, CNA, and death educator. Welcome to the team, Jane!

Jane Whitlock BIO:

I am a trained end-of-life doula through Doulagivers out of NYC with Suzanne O’Brien. I am also a trained CNA (certified nursing assistant).I provide practical guidance and support for individuals and families during the end-of-life process. My work nicely dovetails with the work of hospice.

I became an end of life doula after taking care of my husband who died after a 4 month illness with kidney cancer. I learned first hand how I could have benefited from having someone who had been down this path before, to guide me. My husband spent the last 2 weeks of his life at a hospice house. He was fully supported medically for his physical ailments, but we both felt anxious spiritually.

BJ Miller (check out his Ted talk if you don't know who he is) says, "We spend our entire lives avoiding thinking about death, when it finally comes into view, there's a thicket of panic, denial, or disbelief to cut through before people can focus, more mindfully, on the experience and begin to make decisions to improve their last days. " This is the work of an end of life doula. Someone with experience who could create space for him to talk about his fears freely, without trying to "fix" them. On the more practical side I as the caregiver, would have loved having someone prepare me for what to expect as the experience unfolded.

I read the pamphlet that hospice gives you "When death draws near" about 100 times but it didn't quiet the panic inside me. I wished for the gentle, reassurance from someone that we had prepared and that I could handle what was coming, and would have welcomed blessings and poems to enrich the experience. ​

Death has many gifts to offer us. The gift of living our best lives while we face dying. The gift of finding meaning in our lives. The gift of having the opportunity to tell loved ones: I'm sorry, I forgive you, thank you, and goodbye.


Your step by step guide to learn, launch and grow a successful Death Doula Business. Click Here:


This is a community-supported group hosted by Suzanne B. O'Brien RN, founder of the International Doulagivers Institute for training those who want to be professional End of Life Doulas, Doulagiver Practitioners and for anyone wanting more EOL education Join Here:

Ask A Death Doula Interview with Y4T Founder

Ask A Death Doula Interview with Y4T Founder

August 3, 2021

Today on the Ask a Death Doula Podcast, I am speaking with Y4T Founder Lisa Danylchuk!!

Lisa is a heart centered caring individual that has used her own personal story and journey to create a platform to help others. Get ready to me inspired by this woman and her work.

Lisa Danylchuk is a LMFT, E-RYT is an author, licensed psychotherapist, and founder of the Center for Yoga and Trauma Recovery. A graduate of UCLA and Harvard University, her work has pioneered the field of trauma-informed yoga and transformed our understanding of embodiment practices in therapeutic work. More than 300 providers from 25+ countries have completed Lisa’s Yoga for Trauma (Y4T) Online Training Program, the first virtual program to train providers offering yoga for trauma recovery. She serves on the Board and as UN Committee Co-Chair for the International Society for the Study of Trauma and Dissociation, was elected to the role of Secretary in 2018 and was nominated President-Elect in 2020. She’s written for publications like Good Therapy and the American Psychological Association and was named one of the top 20 Inspirational Yoga Teachers To Follow in 2016. Honored as one Luluemon’s first US ambassadors, her blog has also been recognized as a Top 25 Yoga Blog. I hope you enjoyed this interview as much a Is did! Please make sure to grab your free resources below!

How We can Heal Free Resources for Doulagivers

Doulagivers Grief Guide

More about Y4T @

Ask A Doulagiver Podcast Interview With Author Jennifer O’Brien

Ask A Doulagiver Podcast Interview With Author Jennifer O’Brien

July 21, 2021

Get your Grief Guide at

Jennifer O'Brien

In this episode of Ask A Doulagiver, I have the pleasure of speaking with Author of The Hospice Doctor’s Widow Jennifer O'Brien.

Jennifer O’Brien has helped thousands live and love more fully by recognizing that: at the end of life comes death; family caregiving is both the hardest job and the greatest honor most of us will ever face; and grief is abundant love with no place to go. She is the author of The Hospice Doctor’s Widow: A Journal, an art journal filled with beauty, practical insights, humor, and heart. The book has won a Nautilus silver award in the Death & Dying/Grief & Loss category, a Next Gen Indie Book gold for Relationships, and an Independent Publishers (IPPY) bronze for Gift.

For more than 30 years she has been a practice management consultant to physicians and served as CEO for two large medical practices. She holds a bachelor’s degree from Boston University and a master’s degree in organization development from Loyola University – Chicago. She lives in Little Rock, Arkansas.

What is a Death Doula? Top 7 Questions

What is a Death Doula? Top 7 Questions

April 12, 2021

In this episode of "Ask a Death Doula" I will be covering What is a Death Doula and the Top 7 Questions Answered.


 You Will Learn:


1) What is a Death Doula?

2) What do Death Doulas do?

3) What Holistic support do Death Doulas provide?

4) Are there National Initiatives in place for the Death Doula Practice?

5) If I have a Death Doula, do I still need Hospice?

6) What is the projection for the Death Doula Profession in the future?

7) How do I become a Death Doula?



Links Mentioned in This Episode:


1) International Doulagivers Institute


2) NHPCO End of Life Doula Council




4) Free Level 1 End of Life Doula Training


Ask A Death Doula Podcast With Lisa Zimmer

Ask A Death Doula Podcast With Lisa Zimmer

January 23, 2021

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