Ways of Grieving: Tracee Dunblazier

Ways of Grieving: Tracee Dunblazier

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Today we’re speaking to Tracee Dunblazier, a spiritual empath, shaman, educator, and spiritual counselor based in Los Angeles, California.


 

What does your faith teach about happens to people when their lives end?

My path believes in the eternal spirit. Every person, at the end of their lives begins a transition or ascent into spirit. No matter the cause of death, known or unknown, they begin an awareness of spiritual dimensions of energy. Based on how they are living those new spiritual dimensions can be positive and beautiful or conflicted and tumultuous. Every person is seeking to justify their life with peace.

As a spiritual counselor, how do you comfort the dying?

All people will comfort the dying with the degree of comfort they have with their own mortality and experience with death. As an empath and spiritualist, I have daily, continually, and deliberately addressed my own mortality by witnessing for others their own transitioning experience. The process of losing interest in the physical and opening their awareness to the emotional, astral, and spiritual dimensions. Where illusions, delusions, angels and other spiritual beings reside.

How do members of the community traditionally respond to the death of one of their members?
As spiritualists, often times, members of the community relate to death in a less emotional or detached way which can sometimes be hurtful or offensive to the close grievers of the loved one who has died. Of course this is not the intention but is quite common. They also support with prayer and deliverance.

Is there a service to memorialize the dead? What is it like?

Usually. A memorial party or celebration with a memorial altar being constructed with sacred items and a place that loved ones can place important or meaningful items. The memorial altar is usually kept for 30 days, sometimes more.

What rituals of mourning are there in your faith?

An altar dedicated to the transition sometimes months in advance as death is recognized as a transition from one form to another. Creating a sacred space to focus the energy of the person in transition and also to focus the grieving energy of the loved ones all into a place of acceptance and communication of the transition.

Is there a particular amount of time allocated for grieving?

No, it is accepted that everyone will grieve in their own way and that in some situations their is complicated grief as their isn’t any conscious understanding of the death and that there may still me living experiences that were left unresolved. The resolution of those experiences at some point will be a part of the grieving process.

What text or passage would you suggest to a member of your faith community who is grieving?

“We must learn to embrace death and other life transitions openly and without fear and to recognize that there is a spiritual and emotional process inherent in each change. Giving yourself and each other the time to create space and opportunity to celebrate each other during the final days of life, instead of in the fear, shock, or shadow of death itself. We can’t forget that for every ending there is a new beginning.”  The Demon Slayer’s Handbook: A Practical Guide to Mastering Your Inner World by Tracee Dunblazier

What words would you share to comfort members of our community who may be mourning?

Do everything that you can to embrace your grief and accept the loss of your loved one in the physical world so that you may open to their spirit and love from the spiritual world. Remember that there is no loss of love, ever. They are waiting for you to open to their new form of love and communication that is accessed because the heavy emotion of grief has prepared you.

Is there a tradition from your faith that might be comforting for people of other faiths?

Creating a memorial altar for the loved one and then working with it daily through prayer and conscious intention to grieve the loss, acknowledge what you miss and every other aspect of your grief, and then eventually to the new life you’d like to cultivate without the person. Keeping a daily transition journal will be helpful to complete old emotional and spiritual dynamics that you had with the person so that you can renew your heart for yourself first and eventually for them in the new way. Doing these things will allow for a streamlined grief process and cultivation of the understanding of what it actually means to be eternal.


 

Tracee DunblazierTracee Dunblazier, GC-C, CCDC, spiritual empath, shaman, educator, and spiritual counselor is based in Los Angeles, California. Tracee specializes in grief counseling, energy dynamics, intuitive counseling, Shamanic healing, past life regression, soul recovery, transition strategy, addiction transformation, and space clearings. In 2005, Tracee founded itztime.com to offer resources, education, and strategies for other practitioners as well as those just embarking on their spiritual path, and in 2012, Iamtoostrong.com, a site where people can tell their stories of overcoming and transformation.

As a multi-sensitive, Tracee blends information that she receives intuitively with different modalities to create a unique healing plan for every client. Every session is focused on freeing the client from their presenting issue to release, empower, and heal – no matter what the condition. Tracee’s compassionate, humorous, down-to-earth style supports and empowers clients as tender topics are addressed during the session.

Tracee’s been a guest on many prominent television and radio programs informing others about spirituality and sacred ritual practices. An accomplished author, Tracee’s published articles cover many subjects related to spirituality and her blog breaks down current events and daily energy dynamics that everyone experiences. Tracee holds workshops throughout the year as well as providing mentoring programs that teach spiritual development and energy dynamics to both the novice for self-healing and the professional practitioner.

Ways of grieving: Ade Justus

Ways of grieving: Ade Justus

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Today we’re speaking to Ade Justus of Righteousness of God Ministries, an Apostolic Christian church.


What does your faith teach about happens to people when their lives end?

My faith is based on the bible and here’s what the bible teaches about people when their life ends. Bible says after death is judgment. We believe there is life after death, so when a man dies, he is going to face the judgment of God based on how he spent his life. If he died in righteousness there is hope of eternity, but if otherwise he will face eternal condemnation.

How do clergy comfort the dying? How do lay people comfort the dying?

Clergy comforts the dying, based on the knowledge, believe and faith of the individual. Jesus said that whoever believes in Him will have eternal life. So the best way to comfort the dying is to let them know that, they will be welcomed into eternal bliss by the virtue of what Jesus has accomplished for them on the cross, and by personal experience with Jesus.

The bible provides a way for lay people to comfort the dying. They can come in agreement in prayer with the person and follow what the bible says in James 5:13-16.That is the best way to comfort them.

How do members of the community traditionally respond to the death of one of their members?

The response of one community defer from another, it depends on the community you belong to. It is a mixture of different faith, so all have different ways to respond to death. But there is no better way to respond than to console one other and show each other the love of Christ.

Is there a service to memorialize the dead? What is it like?

There is no service to memorialize the dead in the New Testament. But some churches hold such services.

What rituals of mourning are there in your faith?

There are no rituals of mourning in my faith based on the New Testament.

Is there a particular amount of time allocated for grieving?

There is no time allocated for grieving, it’s all about the grace to let go of what has happened and understand what bible said about the dead, that we shall still meet again in heaven. So we can grieve for a while and then rejoice because we know we’ll meet them again and also thank God for a life well lived.

What text or passage would you suggest to a member of your faith community who is grieving?

The text for those that grieving are 1Thessalonians 4:13-18, 1 Corinthians 15:51-52.

What words would you share to comfort members of our community who may be mourning?

The word to comfort member of the community mourning is to let them know the bible regards death as sleeping, and that we have hope of seeing those that are dead again in eternity, 1Thessalonalns 4:13-18.

Is there a tradition from your faith that might be comforting for people of other faiths?

We have no tradition but salvation. Believing in the finished work of Jesus Christ is comfort enough for the people of our faith.

Ways of grieving: Reverend Leanna K. Fuller

Ways of grieving: Reverend Leanna K. Fuller

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. The Reverend Dr. Leanna Fuller is assistant professor of pastoral care at Pittsburgh Theological Seminary and is a member of the United Church of Christ, a mainline Protestant denomination.


What does Christianity teach about what happens to people when their lives end?

First, it’s important to recognize that Christianity is a very broad tradition that includes quite a bit of variation in belief and practice around particular topics such as death and dying. However, I think it’s fair to say that Christians typically affirm that when we die, we enter fully into God’s presence, and that we are held eternally in God’s love and care. Often people talk about this in terms of “heaven,” though individual Christians or streams of the tradition may differ on what exactly heaven will be like. Still, most all Christians would agree that when our earthly bodies die, we go to be with God.

How do clergy comfort the dying? How do lay people comfort the dying?

Within the Protestant tradition, the ways that clergy and lay people comfort the dying are, for the most part, quite similar, as we believe pastoral care is work to which all the people of God are called (not only the ordained). Both clergy and lay people might comfort the dying by sharing passages of Scripture with them, praying with and for them and their families, offering practical assistance (such as cooking meals) to families who are caring for dying persons, and simply assuring the dying person that he or she is held by the love of God and that God is present with him or her at every step of the dying process.

How do members of the community traditionally respond to the death of one of their members?

Many Christian communities respond to the death of their members by having a time of visitation with the family very soon after the death (either at the funeral home, at the church, or at the family’s residence); a funeral or memorial service within the days or weeks following the death; and then follow-up care farther into the future, including calling or sending cards to the bereaved family members, visiting the bereaved and offering food or other practical assistance to them, and occasionally having formal times of remembrance for members who have died within the context of the community’s regular worship services.

Is there a service to memorialize the dead? What is it like?

Christian communities vary in the particular ways in which they memorialize the dead, but most have some type of funeral or memorial service that they offer in the days or weeks following someone’s passing. Depending on the community’s particular tradition, these services will include some or all of the following: Scripture readings, prayers, music, a short homily (sermon), one or more eulogies (remembrances of the deceased shared either by the presiding minister and/or by the deceased’s loved ones), and rituals surrounding the committal of the body or ashes.

What rituals of mourning are there in your faith?

The primary ritual of mourning in most Christian communities is the funeral or memorial service. Beyond that, other rituals of mourning might include a time each year when all members of the congregation who have died in the previous 12 months are remembered in a special way during worship (many congregations do this at All Saints’ Day), or in some traditions it is customary for bereaved family members to wear particular kinds of clothing (only black and white, for example) for a set period of time after their loved one’s death.

Is there a particular amount of time allocated for grieving?

The tradition itself doesn’t set a particular amount of time for grieving. Unfortunately, the broader culture in the United States seems to be quite impatient with the grieving process and expects people to be “done” with it in a very short time (for instance, most employers only offer 3 days for bereavement leave, no matter what type of loss it is.) So, many Christian communities may have inadvertently absorbed this attitude and may feel anxious for bereaved members in their midst to stop grieving and “move on,” when, in fact, most contemporary research on grief suggests that grief never really ends. Instead, it usually changes in intensity over time, but the person who has suffered the loss will probably never be quite the same again, and will have to learn how to create a “new normal” for him- or herself.

grief changes you

What text or passage would you suggest to a member of your faith community who is grieving?

Some of the common passages I have used at funerals or with bereaved persons include Psalm 23, Psalm 121, John 14:1-4, and Revelation 21:1-4.

What words would you share to comfort members of our community who may be mourning?

As a pastoral caregiver, I am aware that no words, no matter how eloquent or powerful, can take away another’s pain. However, I do think that assuring people of God’s presence with and love for them can be extremely comforting in times of grief. I also try to find ways to share my commitment to be present with the bereaved – to assure them that I will be there for them if they need someone to listen or to sit with them in their pain. As I often tell my students, “Most people won’t remember what you said to them; but they’ll remember that you were there.”

Is there a tradition from your faith that might be comforting for people of other faiths?

I can’t really think of anything specific – other than having the community of the faithful gather around the bereaved and hold them up with love, prayers, and other signs of support. I imagine that most people of other faiths already do this in some way, but I’m reminded that very often, bereaved people have told me that it was the love and support of their faith communities that helped them to get through the most intense moments of their grief.


The Rev. Dr. Leanna Fuller is a graduate of Vanderbilt University (Ph.D.), Vanderbilt Divinity School (M.Div.), and Furman University (B.A.). Her dissertation is titled “When Christ’s Body is Broken: Anxiety, Identity, and Conflict in Congregations.” Fuller has earned numerous fellowships, awards, and honors. She received the Louisville Institute Dissertation Fellowship in 2010-2011 and multiple graduate teaching fellowships from Vanderbilt. Fuller’s most recent conference paper, “Anxiety, Emotions, and Encounters with Difference” was presented at the Academy of Religious Leadership Annual Meeting. Her ministry experience includes serving as associate pastor of Oakland Christian Church in Suffolk, Va., where she coordinated youth ministry and Christian education programming. Fuller also worked as chaplain resident at Riverside Regional Medical Center, in Newport News, Va., providing pastoral care for patients. Fuller’s family includes her spouse, the Rev. Scott Fuller, a UCC minister and chaplain; and their 3-year-old son, Simon.

Ways of grieving: Dr. Angelo Volandes

Ways of grieving: Dr. Angelo Volandes

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Angelo Volandes, M.D., practices internal medicine at Massachusetts General Hospital in Boston, and is on faculty at Harvard Medical School. He is an advocate for patients and families and the author of  The Conversation: A Revolutionary Plan for End-of-Life Care, about how people can empower themselves to get the right medical care at the right time and on their terms.


What does your faith teach about happens to people when their lives end?

In the Greek Orthodox Tradition, Greek words used in the Bible often influence our understanding of belief. For example, the word “asleep” is from the New Testament word koimaomai, which gives us the word cemetery. As a young person in the church, I often understood death to be a person sleeping: metaphorically they are no longer in their bodies but that does not mean they don’t exist. Rather, they exist in another world, no longer struggling with the cares and issues of this world

volandes

How do clergy comfort the dying? How do lay people comfort the dying?

I think one of the most powerful acts that clergy and lay people offer to the dying is to read prayers and hymns. This simple act reminds people that this earthly existence is temporary and that mortality is a fact of our existence.

How do members of the community traditionally respond to the death of one of their members?

The memorial service is participatory. The entire community chants in response to the hymns chanted by the priest. I think this is a powerful means by which the community comforts the family and celebrates the memory of the departed.

Is there a service to memorialize the dead? What is it like?

The Greek Orthodox service for the dead includes prayers for the departed, as well as prayers to comfort the living. Many of the themes of these hymns refer to our own limits and mortality in this world. All the prayers and hymns are chanted with Byzantine music, which is simultaneously mournful and consoling.

What rituals of mourning are there in your faith?

The memorial service is performed on the day of death, as well as the third day after, the ninth day, the fortieth day, three months, six months, and the first anniversary. This cycle of mourning allows the community to both celebrate and remember the departed.

Is there a particular amount of time allocated for grieving?

Grieving is allowed for about a year.

What text or passage would you suggest to a member of your faith community who is grieving?

I am an image of Your ineffable glory, though I bear the scars of my transgressions. On Your creation, Master, take pity and cleanse me by Your compassion. Grant me the homeland for which I long and once again make me a citizen of Paradise.
Blessed are You, O Lord, teach me Your statutes.
Give rest, O God, to Your servant, and place him (her) in Paradise where the choirs of the Saints and the righteous will shine as the stars of heaven. To Your departed servant give rest, O Lord, and forgive all his (her) offenses.

What words would you share to comfort members of our community who may be mourning?

I think the process of mourning takes times. The beauty of the memorial service in Easter Orthodoxy is that it occurs over the course of a one year cycle, allowing the family to mourn the loss while recognizing that the departed exists in a place apart from our earthly toils.

Is there a tradition from your faith that might be comforting for people of other faiths?

Listening to the Byzantine chants of Eastern Orthodoxy is powerful. The music is simultaneously mournful and hopeful, reflecting the pain of death but remembering that it is the start of a greater existence.


Angelo Volandes is a physician, writer, and patients’ rights advocate. He practices internal medicine at Massachusetts General Hospital in Boston, and is on faculty at Harvard Medical School. He is Co-Founder and President of Advance Care Planning (ACP) Decisions, a non-profit foundation implementing systems and technologies to improve the quality of care delivered to patients in the health care system. He is the author of the new book The Conversation: A Revolutionary Plan for End-of-Life Care, about how people can empower themselves to get the right medical care at the right time and on their terms.

Born and raised in Brooklyn, NY, he was educated at Harvard, Yale, and the University of Pennsylvania. He lectures widely across the country, and spends his time in Massachusetts with his wife Aretha Delight Davis, MD, JD and their two daughters.

Ways of grieving: Reverend Beverly Molander

Ways of grieving: Reverend Beverly Molander

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Reverend Beverly Molander is affiliated with The Church of Religious Science and is the co-author of Heartfelt Memorial Services: Your Guide for Planning Meaningful Funerals, Celebrations of Life, and Times of Remembrance.


What does The Church of Religious Science teach happens to people when their lives end?

The physical part of life on earth ends, however our spirit/soul continues on its journey. Life cannot be destroyed; however the form it takes can change. We don’t talk about the ‘afterlife” because life continues after physical death. Whether we see it or not, it still exists. On the physical, worldly side, we also say that the spirit of a loved one lives on in the hearts and minds of those who were touched by that person — the impact of the person can be felt for generations to come.

Reverend Beverly Molander

How do you, as a Reverend, comfort the dying?

Compassion is the key. The most important gesture we can give is to honor the dying person by providing what is needed and required at the moment. With some, it is being a silent presence. For others (and with their request or approval), prayer is appropriate. Sometimes, readjusting the light blanket and smoothing it out is a loving gesture that would be appreciated. If the person wants to chat and reminisce, sip some refreshing water, or have privacy with family members, all is fine.

Since we believe that we are all One, we understand that, while it may be comforting to have the minister or practitioner present in the same room, the clergy does not have to be present for support to be felt. We say affirmative prayers, or spiritual mind treatments, for anyone at any time and under any circumstance. We believe that we are never separated from one another and therefore the impact of what we think, say, and do for one another can be felt at any time. It can even help transform the experience of the one who is dying – and help to bring calm, acceptance, or healing. Our clergy don’t claim magic or mystical powers for healing; we do feel that we all have the ability go back to the basics, for health, healing, peace and love. We also believe that each of us is on our own journey. We respect the wants and desires of the person who is dying. We do not give advice or judgment. We simply offer comfort in whatever way the person who is dying wants it. All is well.

How do members of your faith community traditionally respond to the death of one of their members?

We cry, we mourn, we share, we remember, and then we usually celebrate the life of the one who has passed on rather than stay stuck on somber feelings of regret and loss.

Is there a service to memorialize the dead?

Most services are called Celebrations of Life. There are pictures, favorite music, videos, and other memorabilia on display so that everyone attending can learn about the person.  Oftentimes people from various phases of the person’s life are invited to share their remembrances. While sad, it is also a time when we can remember the most heartfelt parts of what that person brought to our lives. There is not much emphasis on a casket or cremation urn; rather it is about the spirit of the person that lives on.

What rituals of mourning are there in your faith?

There is no pre-determined ritual for Centers for Spiritual Living. We are a diverse and accepting community, therefore just about anything is acceptable. Although some choose to use candles or incense during the service these are not necessary – they may simply bring comfort to those in attendance. Sometimes there are informal gatherings or even parties held to honor the person who has died or spread the ashes. While we choose to look at the situation from a positive attitude of gratitude for the person, there is no shame in feeling sad or bad. The sweet and sour of life go together.

Is there a particular amount of time allocated for grieving?

There is no time limit to grieving; and neither is there an expectation that the loss of someone dear has to ruin the lives of those who remain. We believe that honest expression of feelings is better than repression. Grieving is unique and individual.

What text or passage would you suggest to a member of your faith community who is grieving?

Per Ernest Holmes in The Science of Mind textbook, “The Spirit is both birthless and deathless. The Principle of Life cannot know death. The experience of dying is but the laying off of an old garment, and the donning of a new one. “There are bodies celestial and bodies terrestrial; there is a material body and a spiritual body.” We are all of this.

What words would you share to comfort members of our community who may be mourning?

In our book, Heartfelt Memorial Services, there is a large section on “What to Say and What Not to Say” to someone who is grieving. Loss can be profound and it is always individual. We cannot presume to “know’ what the other person is going through. My main goal is to listen to the person grieving and to allow the time needed for that person to talk or cry or laugh. Oftentimes, taking the time to remember and talk about the loved one is the most soothing balm we can offer.

Is there a tradition from your faith that might be comforting for people of other faiths?

We have no vested interest in what people of other faiths believe about salvation or afterlife. Our own thoughts on these topics would take a back seat as we support others in going through their own rituals and feelings of loss.


Beverly Molander, MEd, RScM found close-knit, loving groups in church affiliations that began with Baptist churches in Eau Gallie and Tallahassee. After a sabbatical from any church during her twenties, Beverly found a close church community with the Unitarian Universalist community and, in the mid-eighties, she found a new spiritual home at the Atlanta Church of Religious Science (now Spiritual Living Center of Atlanta). In 1992, Beverly found herself to be a single mom rearing her son, Nigel, from the time he was two years-old. Beverly worked in radio or TV during the day and was with Nigel at night, and studied for her ministerial license in the time she had. Now an ordained minister, Beverly hosts a weekly radio show, Affirmative Prayer; Activating the Power of Yes, on Unity Online Radio.

Ways of grieving: Chet Yoder, Garden Spot Village

Ways of grieving: Chet Yoder, Garden Spot Village

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Chet Yoder served as pastor at the Bowmansville Mennonite Church for eighteen years before becoming the Director of Pastoral Services at Garden Spot Village in August, 2008. Garden Spot Village is a not-for-profit continuing care retirement community that is committed to Christian values and principles.


chet yoder speaks on accepting what is and moving forward in positivityWhat does your faith teach about happens to people when their lives end?

As one who subscribes to the Christian faith, I believe that life continues following death.  The spiritual connection we have with God is not discontinued by the death of the body.  The Christian faith relies on the promises in the bible about the afterlife, which is often referred to as eternal life, life with its origin in the here and now, and which continues following the demise of the human body.

How do clergy comfort the dying? How do lay people comfort the dying?

Clergy often have specialized training in the care and comfort of the dying.  We are taught to observe physical symptoms which suggest that death may be close.  Often, we offer words of hope and encouragement from the perspective of faith.  Sharing scripture readings, prayers, and music all are effective forms of ministry to the dying.  And many times, simply being present is one of the most effective forms of ministry one can offer.  Lay persons often offer ministry similar to clergy, depending upon the training they have received.  We actively recruit lay persons to offer the ministry of presence to the dying when they have no one (family, etc.) attending to them when death is imminent.

How do members of the community traditionally respond to the death of one of their members?

The Garden Spot Village community often functions like a family when one of our members passes away.  Residents offer prayers and words of sympathy and comfort if there is a surviving spouse, or to family members when they have opportunity.   A notice of death, along with the time of the memorial service, is posted publicly so that neighbors and friends can offer their support and attend the service.

Is there a service to memorialize the dead? What is it like?

Very often a service is held following the death of one of our residents.  This may be a funeral service several days after the death with the body present for viewing and visitation with the family.  Many times a memorial service is held at the convenience of the family, sometimes weeks after the death event, which does not include a body for viewing but provides opportunity for visitation with the family and loved ones.  The service will often include music (hymns, songs that were important to the deceased, etc.), a scripture reading and meditation, remembrances shared by family, friends, and neighbors.  Often the service is followed by a time of refreshments and socializing in the lobby adjacent to the chapel.  Occasionally when a resident dies who has been receiving nursing care in one of our nursing households, a brief time of remembrance will be held in the household.  This service may include family, nursing staff, additional residents in the nursing household.  On occasion we have used Skype to include family members in these memorial services who are able to attend the service.

What rituals of mourning are there in your faith?

I encourage persons to give expression to their grief.  Sometimes, a spouse of son/daughter of the deceased will share a writing at the time of death or at the memorial service.  Garden Spot Village chaplain staff provides for an end of life celebration ritual at the time of death.  This bedside ritual includes scripture reading and prayers, along with placing a quilt over the deceased until the time of removal from our facility.  The quilt is embroidered with a cross and butterflies, both powerful symbols of life and death in the Christian faith.  I often have opportunity with families during the hours before the death of their loved one to encourage meaningful reflection of the life of their member, along with thoughtful reflection of the meaning of life (and death).  At times my role includes encouragement to family and the dying person to “let go” and place themselves and their loved one into the hands of our loving God.  I am a strong proponent of embracing “what is” and investing our energy into activity that is positive and proactive, rather than reactive.

Is there a particular amount of time allocated for grieving?

This varies greatly depending upon the family and attending circumstances of the death.  Traditionally, memorial services were held several days following death, due primarily to the body being present for viewing and restrictions related to the necessity of burial within a proscribed amount of time.  With the increasing popularity of cremation and decreasing practice of a traditional viewing, services may vary from several days following the death to weeks or even several months.  Increasingly families are choosing a private internment of the remains with a public service held when family is able to convene.

The memorial garden at Garden Spot Village

The memorial garden at Garden Spot Village

What text or passage would you suggest to a member of your faith community who is grieving?

I have several passages which offer hope and encouragement. John 11 contains the account of Jesus’ grief at the death of his good friend Lazarus.  Jesus, through his open display of grief, reveals to us that he also shares our grief and loss. Psalm 23 has been a universally loved passage which presents a pastoral view of the Good Shepherd who cares for his beloved in life and in death.  I have also found Ecclesiastes 3:1-8 helpful in acknowledging the various passages of life, of which death is but one.

What words would you share to comfort members of our community who may be mourning?

I believe it is highly important to validate the unique grief experience of each person, as no two experiences are the same.  I refrain from using sayings such as “I know how you are feeling” and “Don’t worry, God is in control”, believing that while we mean well with words like this, they tend to minimize the grief that persons are experiencing.  I encourage persons to embrace their grief and assure them that God will hold them during this very difficult time.  I often will remind persons that tears are a gift from God for occasions of grief and that we do well to use them.  Many times, the gift of presence for those in grief speaks volumes more than words.

Is there a tradition from your faith that might be comforting for people of other faiths?

Perhaps the most helpful tradition I could highlight is one that is shared by persons of other faiths, that being the commitment of the community to share the grief experience.  In our setting this occurs through personal visits, sending cards, an occasional food item, attending the visitation and service of the beloved, as well as remaining after the service for the food and fellowship which is in itself a wonderful support.  We encourage participation in support groups as well and follow up with pastoral visits and specific information regarding the journey of grief.


garden spot village logoA native of Mifflin County, PA, Chet Yoder has lived in Bowmansville for the past 25 years. Chet attended Rosedale Bible College in Irwin, OH, received his B.S degree from Lancaster Bible College in 1991, and a Master of Arts in Religion from Evangelical Seminary (Myerstown) in 2000. In addition he has completed 2 extended units of Clinical Pastoral Education and has done post-graduate work through the Center for Family Process in Potomac, MD. Ordained in the Lancaster Mennonite Conference, Chet served as pastor at the Bowmansville Mennonite Church for eighteen years prior to coming to Garden Spot Village in August, 2008, as Director of Pastoral Services. He is married to Sandy and father of three sons. In his spare time he enjoys reading, gardening, walking, and various sports activities with his sons.

 

Ways of grieving: Simran Jeet Singh, Sikh Coalition

Ways of grieving: Simran Jeet Singh, Sikh Coalition

Religion is an important source of strength for many of our members, so we’re asking clergy from different religious traditions to share how their members mark the end of a life. Simran Jeet Singh, a doctoral candidate in the Department of Religion at Columbia University and regular contributor to The New York Times, TIME.com, and The Washington Post, was kind enough to speak about how the Sikh tradition approaches dying and mourning.


What does your faith teach about happens to people when their lives end?

The Sikh tradition (Sikhi) gives no clear explanation on what happens to people when their lives end. Sikhi does not place emphasis on afterlife, and instead, encourages people to focus on what can be achieved within our present lives. According to its religious teachings, this human life is a unique opportunity to connect with the Divine, to realize our potential, and to serve those around us.

singhHow do religious leaders comfort the dying? How do lay people comfort the dying?

Sikhi believes that every individual has the same opportunity to develop a relationship with Divinity, and therefore there is no clergy in the Sikh tradition. Sikhs comfort the dying according to their wishes. Many Sikhs prefer to listen to religious music (kirtan) and recitation (path) during their final moments, and many also choose to spend final time with their loved ones.

How do members of the community traditionally respond to the death of one of their members?

Sikhi views death as a part of life and the Divine Order (hukam). According to Sikh traditions, death is not a time for mourning, but instead a time for gathering, remembering, and celebrating. Community members traditionally respond to the death of one of their members by organizing worship services in which people come together to praise the Divine and reflect on the life of the individual who passed away.

Is there a service to memorialize the dead? What is it like?

When a Sikh passes away, family and community members (sangat) gather together for worship. While the themes of the worship service may vary, people generally take this as an opportunity to express love and gratitude. Sikh worship primarily draws from the Sikh scripture (Guru Granth Sahib) — which is written in verse — and is typically conducted with collective singing and recitation.

What rituals of mourning are there in your faith? Is there a particular amount of time allocated for grieving?

The Sikh tradition teaches that life is to be lived with everlasting optimism (chardi kala). Therefore there is no ritual for mourning or grieving, even in a situation of a loved one’s passing.

What text or passage would you suggest to a member of your faith community who is grieving?

A scriptural composition traditionally sung at the time of one’s passing is Sohila. This composition, which is also a core part of Sikh liturgy, reflects on themes related to life, death, and celebration. The community has sung Sohila collectively since the formative moments of the Sikh tradition, and it continues to provide guidance and solace to those who reflect on its messages.

What words would you share to comfort members of our community who may be mourning?

Upon losing a loved one, it may be comforting to reflect on the transience of life and to remember that we are simply guests in this world. It may also help to reflect on concepts of humility, acceptance and graciousness. This ideas are exemplified throughout the Sikh scripture, including in this prayer from Guru Ramdas: “O Divine, you are the True Creator and my Divine Master. Whatever you please is what comes to pass, and whatever you give is what I receive.”

Is there a tradition from your faith that might be comforting for people of other faiths?

I find the Sikh tradition of framing death as an occasion for celebration to be incredibly comforting and powerful. This approach focuses on the positive contributions of one’s life and allows us to better preserve the memories and feelings of our loved ones. Celebrating rather than mourning also pushes us to count our blessings in a time of emotional vulnerability and helps us bring stability and solace into our lives, families, and communities.


Simran Jeet SinghlogoSimran Jeet Singh is a Senior Religion Fellow at the Sikh Coalition. He is responsible for strengthening relationships among faith communities and supporting media outreach.

Simran is a doctoral candidate in the Department of Religion at Columbia University, focusing on devotional traditions and literatures of early modern South Asia. His expertise ranges from the formations of religious communities in early modern South Asia to xenophobia and hate violence in modern America. His dissertation research focuses specifically on the founder of the Sikh tradition – Guru Nanak– and the earliest available manuscript accounts of his life.

He earned an M.A. from the Department of Middle East and Asian Languages and Cultures of Columbia University (2009), an M.T.S. in South Asian Religious Traditions from Harvard University (2008), and a B.A. in English Literature and Religious Studies from Trinity University (2006). He is currently a Truman National Security Fellow and the Scott and Rachel F. McDermott Fellow for the American Institute of Indian Studies. In addition to his role with the Sikh Coalition, Simran serves in a voluntary capacity as the Director for the Surat Initiative and the board for the Sikh Spirit Foundation.

Simran speaks and writes on a wide range of issues relating to religion and culture. He contributes regularly to a number of media outlets, such as The New York Times, TIME.com, The Washington Post, and Newsweek’s The Daily Beast. He has also appeared on various television and radio programs, including BBC, NPR, CBS, and PBS. and in 2014 Simran delivered a keynote address at The White House.

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Caregiver: helpful tips from experienced caregiver

Caregiver: helpful tips from experienced caregiver

When I speak of my loved one, it’s Annie. To you, it will be your loved one. And of course to some, it will be a patient.

The backdrop to my story will hopefully answer some of the questions that come up, when being thrust into the new role of being a caregiver. Remember, care giving does not come with instructions. You’re kind of on your own. Everybody will be telling you what to do, with expectations. Don’t sweat it. It’s happened to all of us.

Although I’m talking about a journey through Annie’s cancer, make no mistake, a lot of this article could apply to different diseases and terminal illnesses. Some things can’t be separated.

Many of us enter the world of being a caregiver without any knowledge or concept of what we’re getting into. We’re simply caregivers in training. It can be very complicated, and will offer up challenges that can drive our emotions to a level that we’ve not seen before. Anger, frustration, trying to and understanding the loved ones needs, are all a part of the initial processing of information and emotions, and quite normal. Sometimes, I felt like I was driving in my car at a high rate of speed and slowly losing control of the vehicle. Instinctively, I knew if I didn’t fight back to regain control, I was going to crash–Welcome, “To The World Of Care Giving.”

It was an honor and a privilege to take care of my wife Annie during her last thirty months on this little patch of the universe, we call earth. But it wasn’t easy. Being a caregiver for a loved one can be one of the most rewarding things we will ever do, but at the same time it can be one of the most challenging and difficult too.

Emotions continually ebb and flow, bringing little clarity, but more complexity to care giving.  In my case, care giving meant being locked in an, at times, insane world 24/7 with little chance of escaping.

Truth is, I personally didn’t want to escape. I wanted to have a running battle with the cancer, giving Annie one more day if I could, with a renewed hope for tomorrow.  Please remember, sometimes all a terminally ill patient has left is faith, hope, and love.  Love being the greatest. When all else fails, the greatest gift we can give our terminally ill loved one, is love.

Being a person that didn’t have a clue what being a caregiver was all about, while being thrust into the world of cancer with no concept of what the disease stood for, was very tough.   Of course, I was familiar with the term, Mr. Somebody, recently passed from cancer. But think about this…What does that really mean to a newbie caregiver. It means you understand the concept that cancer can be deadly, but not how it works. And just to be fair, for a newbie caregiver it could be any form of serious to terminal illness, long or short term care required. Many of the functions, regardless of the illness are going to be the same.

As caregivers, we often become the patient’s window, or eyes and ears, to the world. Without us, for many, the suffering would be great.

In order to demand the best care for your loved one, you have to lead by example. You’ll probably be clumsy at first, make some mistakes, but no caregiver should ever be criticized for trying to do their best and making mistakes in the process. Keep reminding yourself, you’re doing a job that most people won’t. If you’re being criticized for doing your best, ask them to take your place. They won’t!

Being proactive in your loved ones care, is paramount to their well-being. If you know what you’re talking about, think you know, or maybe you know, and you see a perceived problem, don’t remain silent, bring whatever it is to the appropriate persons attention. Your silence could potentially lead to serious complications. Yes, you might be a pain in the butt at times, but perhaps that’s better than the consequences of not speaking up.

I’m going to help you by breaking down a few areas that really troubled me and perhaps help you avoid some of the many caregiver traps.

The Diagnosis

Once the preliminary testing and biopsy had been done, Annie and I were advised that we’d get a call to come back to the cancer center when, the results were in.

Three days later I received a call to bring her back, that day. When we got there and taken back to the patient room, I found out rather quickly I was not prepared, psychologically, emotionally, or with a method to take notes on the visit.

Here’s what I didn’t understand and where I got it wrong. When Annie was given a death sentence, instead of lovingly caring for her, I sort of melted down with her. And that may be normal, but not recognizing that her life was spiraling out of control,  was a missed opportunity to better console her.  If I had it to do over again, I would have sucked in a bunch of air, put my arms around her and loved her through the wretched diagnosis. No spoken words could make things right for her. She was dying, her prognosis was very grim. I was told privately, she had maybe 3 or 4 weeks to live.

Without taking any notes, when we got home there was more questions than answers. Of course, I made the phone call to the cancer center and got what I  needed to know, but that was after the fact. I knew I had to do better.

From that point on, I made it a point to pay attention to every spoken word and if I had a question, I’d ask it. I took mental notes of the conversations, got copies of all the blood tests or other tests conducted on each visit, before we left the appointment. It’s wasn’t difficult once I got through her initial appointment. Still, it would be wise to carry a notebook with you to all appointments, and a good place to keep scheduled appointments.

The reason blood test reports are so important, is that they contain a wealth of information. If you’re dealing with cancer, especially blood cancer, and you lay the results of several tests out, in the order they were taken, and start comparing the numbers from each test, you’ll know if there is any improvement going on at the time, or not. It can be psychologically and emotionally important to you and the loved one too.

In the beginning for the first few months, Annie was losing a little more ground every day. But slowly and surely over time, I could see a little bump in the numbers, with indicated some stability in the blood counts. I wasn’t simply looking at red or white blood cells–included in the report are many other life sustaining factors such as nutritional levels, potassium, magnesium and so on.  So always get the report if you can, and compare it with future reports. (it’s kind of a big deal, it really is.)

Insurance

When you arrive with your loved one for the diagnosis, make sure you have an idea of what healthcare coverage your loved one has.  One of the first things said to me after the diagnosis and a few spoken words from the oncologist was, Bob, let’s take a walk down the hallway and see what sort of insurance coverage you have. I immediately had, what felt like, was a short panic attack, as I had no idea of what our insurance would cover in the very expensive world of cancer.

Sadly, the level of care and treatment your loved one will get is determined by your insurance coverage. For example, if you need the best chemotherapy available, the so called silver bullet, which will usually be much more expensive then the lesser chemotherapy that might get a response to the disease, depending on your coverage the insurance company initially makes the choice on which drug they will approve.  If due to your coverage the insurance company elects to approve a lesser version of the silver bullet, they’ll try it for a short time and look for a response from the cancer. If it don’t work, they’ll give the oncologist permission to move up to the next chemotherapy on the ladder, or they won’t. He’ll certainly seek approval to move up to the next drug. And sometimes, as Annie’s oncologist said, by the time a patient gets what they need, it’s too late to save them. (Always question the oncologist on how he expects the cancer to respond to the particular drug being given to your loved one, and is it the best available.)

After checking our coverage, Annie’s oncologist sat me down and thanked me for my 24 years of service in the military, and with a sigh, told me he wished everyone had coverage like Annie, as he could help so many more people. It was imperative that Annie have the silver bullet, and she, was covered for it.

Anytime a loved one is going in for a diagnosis or potential diagnosis, make sure someone is with them. Annie’s visit and diagnosis would have been very difficult for her on many levels, had I not been there. She was trying to come to terms with all the emotions that were filtering throughout her body, and answering questions about our insurance coverage would have been very difficult for her.  And, had she not been able to answer the questions on insurance, treatment strategy would be useless.  Treatment usually, perhaps always, works off insurance approval.

Clinical Trials

Clinical trials have been around a long time. But not many folks know about them. I certainly didn’t. And sometimes, especially with cancer patients, depending on the cancer, the clinical trials may offer the best chance of survival. Of course, that’s due to new experimental drugs and therapies not yet on the market.

When you get a cancer diagnosis make sure you ask if there are any clinical trials going on for your particular cancer. In Annie’s case, her oncologist called a nurse into the room that handled the clinical trials. Annie met the requirements, but the clinical trials for the chemotherapy she needed had shut down for two weeks for medication adjustment–And the oncologist said, I don’t have two weeks, I don’t even have two days. He needed to start chemotherapy immediately, which would disqualify her for the clinical trials at the time. And it did. However, with our insurance coverage she was able to get the new drug anyway. If you can get on the clinical trials you will likely get the best medication with little out of pocket expense. That’s an important fact to remember.

Also, there are many different diseases besides cancer that have clinical trials, and some are to do with medical devices. So make sure you ask the doctor about the clinical trials if you’re facing a particularly bad disease, especially if you don’t have great insurance coverage. And don’t wait until treatment starts as that may disqualify the patient or loved one.

There are also clinical trials now for some cancer’s that have regressed, and for cancer that is not responding to treatment.  If you don’t ask, you might not know that, you had a chance to help save, or certainly prolong the life of a loved one.

Mutual respect–doctor versus caregiver

In the beginning, sometimes I’d tell a person who the oncologist was that Annie would be seeing and they’d say, I’m sorry. It appeared Annie’s oncologist had no bedside manners.

I spent 24 years in the military, traveled two and fro, met people everywhere, and in the end I’d have to say, Annie’s oncologist, the late Dr. Moore Sr., was one of the greatest men I’ve ever known.

Yes, he barked at some nurses and her caregiver, me, at times, but he always had Annie’s best interest in mind, and treated her with dignity and respect. As for his bedside manners towards her, impeccable.

Dr. Moore Sr. didn’t just give you his respect, you had to earn it. Why? Simply put, there was often a life on the line. He didn’t like losing patients to cancer. And being fair, the caregiver, the nurse, and the oncologist had to be in sync to get the best possible outcome for Annie or any patient.  And when we didn’t hold up our end, we heard about it.

I took many tough blows (words) to the chin, but I never fell down, I listened and I learned everything I could about the disease. In a few short months he could ask me anything about the disease and I had an answer. My answer may not have always been right, but he saw the progress, and over time we could have an educated conversation about her cancer. And he knew, when his patient was out of his control, I took great care of Annie and had his back too. You see, I wanted her to live too.

As a caregiver, if you pay attention, don’t cop an attitude, take care of your loved one or patient in a meaningful way, you’ll earn and get the respect you deserve. An oncologist or perhaps a doctor can work wonders in an office, but if the weak link in the chain is at home with the caregiver, then the wheels will start spinning in place and perhaps fall off. Progress will not be made, and in fact, may reverse itself.

Strong Support System

You’ll learn rather quickly that you need some sort of help. Annie’s care was, for the most part 24/7. Yes, I could tuck her tightly in her hospital bed in the middle of our living room while I raced over to get some staple food or run a quick errand, but sometimes one can’t do that. Our daughter helped me when needed, and if she was not available I had a neighbor that would sit with Annie.

I do know, when you are a caregiver folks just seem to disappear.  Still, you must try to build a support system by engaging in conversation with them and soliciting their help, if only for a short time, once in awhile. Do this before they disappear, and if you can’t, won’t, or don’t, caregiver duties may wear you out rather quickly. Caregiver burnout is not a good place to be.

The first two months I lost 18 pounds. But I muddled through, and in the end used whatever help I could get. However, I didn’t need or want much help as I went ahead and closed our two small businesses down after the diagnosis to give her my undivided attention. Financially it was tough, but you can only do what you can do. Losing financial stability is simply the casualty of a terminal illness.

Anticipatory Grief

bob's blue batThe minute I heard Annie’s prognosis, I started grieving her loss. It may not happen to you until later on in the illness, if it happens at all. But here’s the thing, if you are grieving, try not to grieve around your loved one. It’s a given that, if you are suffering from Anticipatory grief, your loved one will probably be grieving their own mortality. Try to keep your emotional state in check if you can. I lost it with Annie, one time. Cried like a baby sitting at the dining room table with her. Of course, it worried her, she was depending on me to be strong and help her fight the battle. My sign of weakness whether warranted or not, was not a good idea. I learned to take it outside. I had a plastic blue baseball bat I used to smack a tree. And to my surprise it worked well. I came back in the house and continued on with my duties without all the pent up emotions.

Control the illness

If your loved one is suffering from a newly diagnosed terminal illness, at least in the beginning, it’s quite possible that the illness will occupy much of your mind, and you may feel a counterproductive hate for the illness.  But while your fumbling around with more questions than answers, if you can get this one area right, you’ll save yourself a lot of chaos.

I had to learn to control the cancer and not let it control me. How do you do that? First, recognize that a big part of your struggles are centered around the disease. For example, while I’m walking around thinking, I hate cancer, I hate cancer, look what it’s done to Annie–in essence the cancer is having its way with me. My mind flows from one bad thought to another, to include my impending loss. Over time, I taught myself to steer my mind away from those thoughts by understanding, life is, what it is. I can’t change it, so why dwell on it. My position in Annie’s life was to love her and provide the best care for her I could. And I couldn’t do that while fighting a losing battle in my mind with the “beast of cancer.”

Eating, not a subject for an argument

Yes, I’d fix Annie a special meal that she’d asked me to cook, and when I brought it to her she’d nervously say, I don’t fancy it now. So I’d take it to the garbage and dump it. And of course, being human, I’d feel a bit put out. But we learn from our mistakes.

I spoke to Annie’s oncologist about the eating dilemma, and he said to feed her whatever she will eat, and at the same time, quit trying to create a perfect world around a dreadful situation. He said, under no circumstances was I to ever make eating the source of an argument. Why! Because cancer inherently puts off a multitude of chemicals that will affect ones appetite. One minute she may fancy something and the next minute, maybe not.  So I developed a strategy through, going back to her old staple favorites.  Fresh or frozen raspberries with vanilla ice cream, deep fried pancakes with mandarin oranges on top with syrup. Which between the two is about one-thousand calories, and half way to the 2,000 calories she needed daily. She also loved the drink, chocolate Boost. However, she would not drink it. She had me freeze it and she’d dig it out with the opposite end of a curved up metal handled spoon. Weird, I know.  But she’d have two or three a day, and digging in that container occupied her time and mind. Those drinks had 250 calories each, some good nutrition, and protein. It worked really well.

What I’m saying is, be creative. If your loved one won’t eat anything but junk food, then do what I did, get out of the perfect world of nutrition and help them gain weight or at least not lose it. Remember, be a calorie counter. The goal is 2,000 calories a day minimum. Pneumonia and bed sores loves malnourished  loved ones.

This might make you smile, and although it started out innocently, it turned into something special.

Annie was in the big chair, asleep at the treatment room getting chemotherapy.  Her sleep was induced by high dose morphine, and although sluggish, as you will see, she was still with me.

I was sitting and observing her, when out of the corner of my eye, I saw the volunteer from Victory In The Valley come walking by with a big basket full of all sorts of snacks. She asked me if I wanted a snack.  I said yes, and plucked out a nice bag of Cheetos. Now those are a really fat fueled, calorie filled snacks. After the first 2 or 3, I guess I was crunching, Annie reached her little hand out to me, palm up. I took my right hand and placed it in hers thinking she wanted to hold my hand for comfort or she was showing me affection. Not so! She shook my hand off, and with her eyes still closed, motioned with her hand for me to give her the bag of Cheetos.  So I put the bag in her hand and she ate every single one of them. Amazing! I had never seen her eat junk food like that before.

What just happened?  Well, it was time to get creative. A door to a huge opportunity just opened. After she stole my Cheetos, I knew I could probably get her to do it again.  I’d go into the living room with a calorie filled snack, sit on the couch and watch her, watch me, as I snacked. Like clockwork she’d say, “Watcha-got.” From that point on, the snack was hers. My daughter did that with her, too. It could be so much fun caring for Annie at times. Never a dull moment.

Caregivers Love

Love, your loved one through their disease if you can. I know the difficulties and challenges presented in the care giving for a loved one with Alzheimer’s and Dementia. But, knowing is understanding and simply doing the best we can.

My position as Annie’s caregiver was not to bark orders at her, but to guide her as best I could, based on my understanding of what we were dealing with at the time.

I went out and visited my dad last year, not long before he died. I noticed he had the onset of dementia. He made me smile so much. Metaphor: I swear, instead of us both talking about Apples when we spoke I, might be talking about Apples and he’d be talking about Oranges.

It was okay. I knew what he meant. If your loved one gets confused, work with them, stay with them, because what’s going on in their mind is totally unknown and unimaginable to us. Dad always called me Bobby. I wondered, in his mind, was he thinking, Bobby, you don’t understand a word I’m saying, do you. I hope that wasn’t the case. I tried to understand.

My sleep solution

In the beginning, care giving for Annie wore me out. It was called 24/7 around the clock care. As many of you know, that isn’t always the case. Sometimes, at various points in Annie’s illness she would be so sick, it would  require a few 35 hour shifts with little rest in between.

A nurse, noting how tired I was, wanted to know my sleep schedule. When I told her what was going on, she simply said–drop what you’re doing at the time if you can and learn to sleep when she sleeps. Once I developed a strategy, I started pushing her wheelchair up to the head of her hospital bed, placing her hand in mine so I’d know if she woke, then lay my head on the side of her bed and take a nap.

The nurse wasn’t a rocket scientist, but her words made me feel a bit like a dummy. And she was right. It worked very well for both Annie and I. A rested, alert caregiver,  is more capable of carrying out their daily duties with quantity and quality.

Never assume anything

While in the military, seventeen years of which were during the cold war, we were taught as soldiers, never assume anything, always check it out. That phrase served many soldiers well.

Enter the world of care giving. An invalid assumption can cost the life of a loved one or patient. It happens all the time. (A recent New York Times article stated that medical mistakes are the third leading cause of deaths in this country, behind Heart disease and Lung cancer.) For example, the words, “I assumed she’d be okay until the doctor made the rounds in the morning,” are spoken all to often.  Sometimes, that’s not the case.

During Annie’s 30 month cancer journey, she spent 100+ days in the hospital. I stayed with her 24/7 unless I had an appointment, and then I got someone else to stay with her for that short time. I always slept in a recliner near the foot of her bed every night, at an angle where I could see her face.

One morning around 2 A.M., I was just settling down in the recliner. Not long after, I heard Annie start breathing in very short, rapid bursts. (This was midway through her disease and almost everything that happened, had happened before. I was educated.) I knew immediately something was wrong. I got off the recliner and walked over to her. The first thing I did was to gently turn her head to the right and check the vein on her neck. It was pronounced and  protruding out. Then I squatted down under her bed and checked the catheter bag…It was empty. I immediately called the nurse to our room. When she arrived, I told her Annie was on fluid overload, and that she needed some immediate intervention via a diuretic to force the fluid out. Then I explained to her how I knew Annie was in trouble. Which was, rapid breathing, the catheter bag, and the protruding vein in her neck.

She said, Bob I can’t wake the doctor at two in the morning and tell her you think Annie is on fluid overload.  She’ll be making rounds in the morning, we’ll wait until then.

I refused to take no for an answer. Which would have been assuming she’d make it until the doctor showed up.

I told the nurse it appeared Annie was drowning in her own fluids. And in the past they used Lasix to get the fluid out. Once she knew I’d been there and done that a couple times before, she ran down and called the doctor. When she came back, she gave Annie an injection of Lasix, and I got to spend the next few hours dumping the fluid out of her catheter bag, and writing the amount on a sheet of paper (chart) in the bathroom.

Annie was back to normal in a couple of ours, and I certainly didn’t mind dumping the bag.

Had I assumed Annie was going to be okay, I’d probably lost her in the night. I knew what her problem was, and when I said it appeared that Annie was drowning in her own fluid, that was the term her oncologist used when he paid us a surprise visit months earlier, and I was sitting by her bed while she was on fluid overload. Reason being, she was getting fluids, they were being urinated into the catheter bag, which was full and backing up into the body. That is an emergency.

This all lead to an intense chat with the charge nurse and me, over the catheter bag. That was around the third month of Annie’s cancer and from that point on, I was always in charge of the catheter bag.

During that event, Annie’s cardiologist, Dr. Farhat, came over and examined her and started treatment with Lasix to remove the fluids. He also taught me how to identify fluid overload.

A caregiver getting educated on the disease and it’s side effects is an invaluable tool in times of crisis.

Approximately 2 days later, the CNA came in, again around 2 A.M., and checked Annie’s blood pressure. It was like 65/39, very low. So I immediately looked in Annie’s mouth, it was very dry, and when I checked her Catheter bag it was empty, despite the fact that she was getting Iv fluids. I told the CNA that  Annie was dehydrated and needed some help. I needed to see the nurse right away. It was the same nurse as before, and we had much of the same discussion as before.  But she called the doctor, and the next thing I saw was her running down the hallway with a 500cc bag of fluid to be bolus fed–that’s rapid feeding. Within an hour or less, urine was flowing into the catheter bag, her blood pressure was coming up, and life was coming back into balance. And, I had another long night and partial day keeping up with the catheter bag.

I learned through care giving for Annie, not to concern myself so much with what was causing a problem, but rather, identify a symptom and get help. If you identify a problem, it’s the doctor’s job to figure out why it happened. And there very good at that.  With seriously ill cancer patients, things can go downhill very rapidly. But as a caregiver, if you watch and learn, through your past experience you’ll be able to see a symptom, and get intervention, as did I.

If I had of been a caregiver for anyone other than Annie, or a close loved one, I could not give them what I gave her. Why! Because love is a powerful force to be reckoned with, and we all know it can make us crazy at times.  But, it allows us to push on and on beyond our own and the expectations of others. The word quit, is not in our vocabulary.  I’d sit for ages, stroking Annie’s hair and whispering words of love to her.  And that’s what love’s about.

However, I would do the best I possibly could for any patient. I’d see things the same, but with less emotion and obvious personal intimate contact.

Caregiver bottom line

Try to keep things like medication, bed baths, food, and so on, on schedule. In other words, if you set up a schedule and stick to it, you will avoid a lot of chaos, and be able to provide better care.  I know that it’s not easy, but for the well-being of you and your loved one, you need to try.

I wish you the best.

(Lead in picture-Annie, Melissa and me)

Annie’s Beautiful online memorial