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Grief/Loss

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Practicing Remembrance & Gratitude During Times of Grief

By Grief/Loss

Grief can rear its head at any moment – at the dinner table, at a holiday family gathering, at the grocery store, or at a child’s piano recital. And this is okay. It’s normal and natural to experience intense bursts of deep emotion during the most ordinary of moments after a loss. But did you know that practicing remembrance and gratitude can help you work through your grief and find your way toward healing?

The Power of Remembrance & Gratitude

As human beings, our memories play a big role in the way we experience life. All you have to do is talk to the family member of a dementia patient to understand that memory is both a powerful and beautiful gift. It’s one that we often don’t appreciate until it’s threatened.

During times of grief, our memories help us process loss. Remembrance allows us to recall and reflect on favorite memories and reminisce about a loved one’s many quirks and beauties. Then, when remembrance is paired with gratitude, we look beyond the pain of now and dwell on the good things in life – both the cherished moments of yesterday and the coming memories of tomorrow. Together, remembrance and gratitude help us heal.

to show someone being comforted

Nationally recognized grief counselor and educator Dr. Alan Wolfelt puts it this way:

The truth, paradoxically, is that in grief, we have to go backward before we can go forward. 

In my experience, remembering the past is the very thing that eventually makes hoping for the future possible. Mourners’ lives will open to renewed hope, love, and joy only to the extent that they first embrace the past. Those who fail to go backward before marching forward after a loss often find themselves stuck in the morass of carried grief.

The loss created by death is the loss of the physical presence of the person who died. In the physical plane, their relationship with the person has ended, and so they grieve. But on the emotional and spiritual planes, their relationship with the person who died continues because they will always have a relationship of memory.

Precious memories, dreams reflecting the significance of the relationship, and objects that link them to the person who died are examples of some of the things that give testimony to a different form of continued relationship.

to show a woman taking time to write and remember a loved one

Simple Ways to Practice Remembrance and Gratitude

When practicing remembrance and gratitude, the most important thing is to take your time. Depending on your personality, you may want to spend time journaling or drawing, engaging in physical activity, watching your loved one’s favorite movie, cranking up favorite music, or talking with a close friend who’s prepared to listen.

How you choose to engage with your memories and honor your loved one’s life is less important than actually doing it. Each time, you may do the same thing, or you may do something different. Both options are completely fine.

Here are a few ideas to help you honor and remember a loved one’s life as you practice gratitude:

  • Set a plate out for them at family gatherings
  • Mark their birthday in a special way
  • Host a dinner in their honor and ask guests to share stories
  • Volunteer with organizations that champion your loved one’s passions
  • Keep a journal of memories and thoughts
  • Set up a permanent memorial and visit regularly
  • Create a memorial keepsake (video, photobook, memory box, etc.)

to show a man listening to music and remembering a loved one

Don’t Rush the Process

You will have multiple opportunities each day to practice remembrance and gratitude. As memories surface – triggered by sights, smells, events – take a moment to engage with the memory and then move toward gratitude.

For example, when washing your whites, you might remember a time when your loved one accidentally threw a red sock into the load of whites, and it turned the entire load pink. In that moment, smile at the memory and let it sit in your mind. Then, take a moment to reflect: “At first, I was so mad, but then we laughed about it. I’m so grateful we had moments like that. I miss you.” And then, take a deep, cleansing breath and continue with your laundry.

It will take practice. At first, the memories may be strong and feel like too much. That’s okay. Over time, the intensity will decrease, and you will be able to engage more easily. After all, grief is a journey, and the ultimate goal isn’t to stop missing the person you love. The goal is to find a way to move forward with hope, healing, and peace with beloved memories by your side.

To show a man thinking deeply

What If I Don’t Miss the Person Who Has Died?

It would be remiss not to acknowledge that people are messy, complicated, and can be difficult – some more than others. If the person who has died was a difficult person in your life, it’s alright to breathe a sigh of relief – this is a completely normal reaction. After that, it’s time to get to work.

Even if you don’t miss the person who has died, you need to work through your feelings for your own well-being. This may mean processing through anger, disappointment, hurt, and painful memories. The work will be difficult (and you may need a professional therapist to help you through the process), but those who never deal with the pain and wrongdoing done to them often end up hurting, broken, and sometimes angry, people. In some cases, they themselves become the “difficult person” in someone else’s life, and the cycle continues.

While moments of gratitude may be few and far between with a difficult person, remembrance will help you unpack any deep emotional baggage. After all the trauma you experienced, its effects won’t end simply because the person who inflicted them has died. We must still learn how to reconcile with our past and move forward toward the future in a healthy way.

to show a mother and daughter looking at photos and remembering loved ones

Get Started Today

Now that you understand the power of remembrance and gratitude and how together they can greatly impact your grief journey, it’s time to get started. Pull out the family photos. Watch videos that feature your loved one. Remember the moments – both the good and the bad. Practice writing down or saying out loud what you are most grateful for with each memory. Find ways to honor your loved one’s life in creative ways.

As you participate in these healing actions, your heart will fill with warmth and love. In time, the sting will lessen. And while you will always miss the physical presence of the person you love, you will remember them with great fondness and celebrate their life, legacy, and lasting impact.

9/11: A Day to Remember Together

By Current Events, Grief/Loss

The events of September 11, 2001, are forever ingrained in the memories of Americans (and people around the world) who were old enough to remember the day. Who could forget the terrifying videos and images paired with the stories of heroic courage coming out of New York, Pennsylvania, and the Pentagon that infamous day? And it’s to our credit that we don’t forget. We should never forget but always remember the lives lost on 9/11.

Why is it so important to remember?

Dr. Alan Wolfelt, nationally recognized grief counselor and educator, has found that remembrance is an important part of grieving. We can’t move forward (healing) until we look back (remembrance). In his own words, he says:

I encourage you to take grief’s hand and let it lead you through the darkness and toward the light. You may not see the light at first, but forge ahead with courage, and with the faith that the light of hope and happiness does exist. Feel your pain, sorrow, sadness, disbelief, agony, heartbreak, fear, anxiety, and loneliness as much as you can.

This may seem odd, as these emotions could well be the ones you most want to avoid. You might fall into the common thinking of our society that denying these feelings will make them go away. You might have the urge to “keep your chin up” and stay busy and wait to “get over” your grief. Yet, ironically, the only way to help these hard feelings pass is to wade in the muck of them. To get in and get dirty. Grief isn’t clean, tidy, or convenient. Yet feeling it and expressing it is the only way to feel whole, once again.

In other words, in order to heal, we must grieve. In order to grieve, we must remember. As we remember, we must find the courage to face the feelings deep within us.

How does the act of remembrance help us as communities and a nation?

1. Remembrance creates an opportunity to share life stories

In so many ways, telling a life story is an essential part of healing. As we learn more about the individual stories of those who perished on 9/11, we are forced to confront the pain and suffering of that day. Even more than that, we see each victim as a person worthy of value. A person deeply loved by others, many of whom are still living. A person whose life was cut short but whose memory lives forever.

By telling the stories of the airline passengers, the firefighters, the bankers, the receptionists, the military personnel, the bystanders, and so many more, we grapple with the national and personal grief we feel and honor the lives of those lost to horrifying events.

2. Remembrance strengthens community bonds

In remembering and grieving together as a nation, we strengthen the bonds in our community. Ask a person born before 1994 where they were when the Twin Towers fell, and they can likely give you a detailed description of exactly where they were and what they were doing when they heard the news.

Every American was touched by the events of 9/11 in some way. As we mark this day, even so many years later, it’s a chance to remember together, to mourn together, and to connect to each other in a profound way. If possible, consider attending a 9/11 remembrance event in your area where you can connect with your community while honoring the lives of those lost.

3. Remembrance re-connects us to our past

We’ve all seen how details can be forgotten or overlooked with the passage of time, even in our own memories. By taking time to intentionally remember, we can connect with the past. We can learn from what has already happened. We can pave the way toward a better future.

Conversations about a painful event are not something to be feared. Healing doesn’t come from blocking out what has happened but from acknowledging it and facing it. By intentionally remembering the events of 9/11 and the lives of those who died, we participate in a healing action – a ritual – that will not only bring hope and healing but will ensure that lives were not lost in vain.

Never Forget

This year, as we remember September 11th, let’s reflect on what matters most in life. That’s exactly what a group of students in a New York classroom did one year after 9/11. This is what they had to say:

We were eight.

Before September 11th, we would wake up with a list of “Don’t Forgets”

Don’t forget to wash your face
Don’t forget to brush your teeth
Don’t forget to do your homework
Don’t forget to wear your jacket
Don’t forget to clean your room
Don’t forget to take a bath

After September 11th, we wake up with a list of “Remembers”

Remember to greet the sun each morning
Remember to enjoy every meal
Remember to thank your parents for their hard work
Remember to honor those who keep you safe
Remember to value each person you meet
Remember to respect others’ beliefs

Now we are nine.

So, let us remember. Let us be unified. Let us never forget and be the better for it.

Two people holding hands in a comforting way

Caring for Yourself Emotionally and Physically When Someone You Love is Dying

By Grief/Loss, Hospice

If you have a friend or loved one who is dying, you’re likely dealing with a lot of feelings right now: sadness, shock, disbelief, anger, anxiety. It’s normal to experience these emotions, and you have every right to feel the way you do. As you juggle your own grief with the need to be there, physically and emotionally, for your friend or loved one, prioritize caring for yourself and realize that you can’t do it all on your own. Below, we will discuss 6 recommendations that will help you tend to yourself and stay emotionally stable as you care for your friend or loved one in their final days.

1. Share Your Feelings

Someone you care deeply about is dying and will soon be gone. Odds are, you will also need support as you explore your own feelings about this illness and the changes you see in your friend or loved one. Find someone who will listen to you without judgment as you talk out your own feelings. To stay available to your loved one, you need to be able to work through your own feelings. Do this with someone you trust.

group of four sitting together, sharing and talking

Additionally, many hospices, churches, and community groups offer support groups for friends and family of the dying—both before and after the death itself. Take advantage of these compassionate resources.

2. Care for Your Body

Visiting or caring for a terminally ill person will zap a lot of your energy – both mental and physical. To make the most of the time you have left with your loved one, you need to make sure you aren’t running yourself ragged. Make sure to eat nutritious meals. Get plenty of rest. Continue to exercise. Spend time doing things that make you happy. Take a break from the sick room.

Colorful plate of healthy foods like broccoli, carrots, chicken, tomatoes, brown rice

If you’re a primary caregiver, it may feel counter-intuitive or just plain wrong to prioritize caring for yourself, to take time away, or to enjoy simple activities, but you will need these times to help you stay afloat. No one can sustain continuous stress, anxiety, and sadness without starting to crack. Adding a few caring habits to your life will help you keep it together and have the energy you need to be fully present with your loved one.

3. Realize Your Own Limitations

It’s important to realize that not everyone can offer ongoing support to someone who is dying. If you feel you simply can’t cope with the situation, try to understand your reticence and learn from it. Ask yourself, “Why am I so uncomfortable with this?” and “What can I do to become more open and compassionate in times of need?”

Do not, however, avoid your friend or loved one altogether. Phone rather than visit. Write a letter or email if you can’t bring yourself to phone. Let them know that this situation is difficult for you while at the same time acknowledging that your loved one’s fears and needs come first.

On the other end of the helping spectrum, don’t become obsessed with the illness or feel that you must be your loved one’s only means of support. Do not emotionally overburden yourself.

4. Establish a Routine

After a terminal diagnosis, everything may feel out of control. Your routine is upset. You are suddenly dealing with events, people, and emotions you didn’t expect. Your life has lost its normalcy and has been thrown into disarray. By establishing a routine, you can begin to gain back some of the normalcy and control you lost. When you feel comfortable in your routine, you can begin to process what’s happened and learn how to deal with and manage your feelings.

Woman writing on a calendar, outlining her routine for the week

Additionally, establishing a routine will help your dying friend or loved one. They also need structure to rely on, as their life has been thrown into just as much, if not more, disarray than yours. If you are a close caregiver, establish a routine together. If you are more on the periphery, make sure to communicate your wish to visit on a regular visit and find a time that works best for both of you.

5. Embrace Your Own Spirituality

If faith is part of your life, express it in ways that seem appropriate to you during this difficult time. Pray with your friend or loved one and with their family. Allow yourself to be around people who understand and support your religious beliefs. Read spiritual verses or poems. Sing songs. Find the comfort that your faith can bring to the hard seasons of life.

Woman sitting in church pew

If you are angry at God because of your loved one’s illness, that’s okay. Find someone to talk with who won’t be critical of whatever thoughts and feelings you need to explore. It’s normal to have questions or doubts when faced with death, but as you embrace your own spirituality, you will find the answers you need.

6. Seek Hope and Healing

As much as you may not want to face it, in time, your friend or loved one will die. To love and live wholly again, you must find a way to mourn. In fact, you cannot heal unless you openly express your grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming. As painful as it may be, you must embrace your grief in order to begin to heal.

Dr. Alan Wolfelt, a nationally recognized grief counselor and author, puts it this way: “You might fall into the common thinking of our society that denying these feelings will make them go away. You might have the urge to ‘keep your chin up’ and stay busy and wait to ‘get over’ your grief. Yet, ironically, the only way to help these hard feelings pass is to wade in the muck of them. To get in and get dirty. Grief isn’t clean, tidy, or convenient. Yet feeling it and expressing it is the only way to feel whole, once again.”

Two people holding hands in a comforting way

Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be caring and patient with yourself. Never forget that the death of someone loved changes your life forever.

With these 6 tips in mind, start choosing the best ways to maintain your own self-health while supporting your dying friend or loved one. More than likely, you will still be tired and emotionally worn. However, these caring recommendations can help prevent you from reaching burnout as you journey alongside someone you love during their final days.

*Based heavily on a brochure by Dr. Alan Wolfelt, a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping children in grief. Published with permission.

Focus on hands, younger person holding older person's hand in a comforting way

Grief & Self-Care After a Loved One’s Alzheimer’s Diagnosis

By Grief/Loss

You’ve received the news that someone you love has been diagnosed with Alzheimer’s disease or dementiaYou may feel numb, in shock, or unable to process what’s happening. Or, you may have seen the signs, and it’s a relief to finally have a medical diagnosis. Whichever is the case, you probably did not expect things to turn out this way. Feelings of grief and loss are filling you as you look forward to a future forever altered. As you grapple with the grief that an Alzheimer’s or dementia diagnosis brings, we hope that these words will bring you hope and understanding for the journey ahead.  

Remember that You Are Not Alone

Navigating the treacherous and emotional journey of helping someone you love live with Alzheimer’s is not easy, but it does not mean that all is lost. By focusing on the abilities your loved one retains, you may still be able to have a meaningful relationship and share joy and love. And by fully mourning and making the most of your own days, you will be living your life “on purpose,” with meaning each and every day. 

Father with two adult sons laughing and enjoying time together

And even though you may feel alone on your journey, you aren’t. More than 6 million Americans are currently affected by Alzheimer’s. To care for them, more than 11 million U.S. family members and friends provide unpaid care. Their love, time, and attention help keep those affected by Alzheimer’s safe and their lives meaningful.  

Whether you are a direct caregiver, or you are a family member or friend without daily caregiving responsibilities, there are so many resources available. Read books or listen to audiobooks. Research online. Talk to your loved one’s doctor. Attend a support group. Grow a support network of friends and family who are willing to share the responsibility of caring for a loved one with Alzheimer’s. There’s so much out there to help if you take the time to look and engage.  

You Will Experience Grief

Alzheimer’s is going to take so much from your loved one, but the losses you will experience as a caregiver, friend, or family member are also significant. You may lose the close personal relationship you had with the person you love. Your ability to do and enjoy the same things together is lost. Even the basis of the relationship may change. In many cases, children and spouses have to act more like parentsIn so many ways, once that diagnosis is spoken, your expected future alters completely.  

Focus on hands, younger person holding older person's hand in a comforting way

If you’re feeling sad or depressed, don’t beat yourself up for how you’re feeling. With so much change, it’s natural to feel grief and sadness  

Recognize Your Own Symptoms of Grief

As you mourn, your grief may feel complicatedIn some sense you need to mourn a person who is physically present but who is becoming more and more cognitively, emotionally, socially, and spiritually absent every day. Society, your friends, and even some of your family members may not understand. Listen to your spirit and your own feelings and slow down to feel your inner pain. Only by facing the pain head-on will you be able to deal with it in a healthy way. 

As you come to grips with what you’re feeling, keep your eyes open for these common symptoms of grief:  

  • denial of the diagnosis or that the person you love is ill 
  • periods of helplessness, despair, and depression 
  • changes in appetite or sleeping patterns 
  • feelings of anger or frustration toward the person with Alzheimer’s 
  • withdrawal from social activities, friends, family, aneven the person with Alzheimer’s 
  • feelings of anxiety or confusion 

Woman sitting at table, writing on notepad

Don’t Avoid Your Grief

Generally, we’ve been taught to avoid emotional pain. However, it’s only by embracing our pain and grief that we can heal our wounds. 

Be wary if others are telling you how well you are doing with your “situation” or if you are not feeling much at all. Sometimes doing well means you are avoiding your pain, hiding your emotions, or experiencing some of the natural numbness that grief brings. 

Take time to care for yourself, keep tabs on your emotions, and make time to actively mourn and express your internal feelings.  

Be Kind to Yourself

You are going through a lot and you deserve kindness— from others but also from yourself. Let go of any self-doubt you may feel. You are doing the best you can. Remember to eat nutritiously, get enough sleep, exercise regularly, and do things that help you relax and be at peace.  

Mother and adult daughter sitting on couch together, talking and lighthearted

Also, take time to celebrate, even the small successes. If you are the primary caregiver, say “Good job!” to yourself when you successfully get your loved one dressed with no emotional outbursts. If you are a friend or family member who does not have day-to-day caregiving responsibilities, feel good about the times when you’re able to offer your help and love. 

Ask for and Accept Help

While you may feel the need to shoulder everything on your own, you need and deserve ongoing love and support. Don’t expect yourself to do everything or to handle your grief alone. That’s too much for one person. You need to talk through what you’re experiencing with people you trust. You will also need help with chores at home, medical appointments, finances, and many other things. 

Ask your friends and family for their support and patience. Those who love and care for you truly want to help. Additionally, you can also phone the Alzheimer’s Disease Education and Referral Center at no charge (1-800-438-4380) or email them (adear@nia.nih.gov) 

Mature woman caring for her elderly father

Join Your Loved One

It can be tempting to write off people with an Alzheimer’s diagnosis. Instead, look your loved one in the eye, and talk to them directly. Join them where they are. Don’t get upset if your loved one makes mistakes (because they will). At times, your loved one will try hard to compensate for any cognitive losses. Join them in this effort. 

To allow your person to function as fully as possible, empower them and avoid limiting them. Encourage their involvement in support groups and consider joining one yourself. Talking to others can help you both navigate the maze of Alzheimer’s.  

Recognize that Respect and Love Endure

At times you may doubt, but remember, respect and love can endure throughout the progression of the disease. Alzheimer’s may take away a person’s memory, but it does not take away their soul. And even though your loved one may be confused and not even recognize you, at the heart, they still love you and appreciate the care you have given. 

Man and woman walking on a green path outside, arms around each other's waist

Do you believe that there is a soul that transcends the physical body? If you do, then you can find comfort in knowing that your loved one’s soul is eternal and the person you love lives on, unharmed by the disease. And that is where their love for you lives, too. 

Caring for a loved one with an Alzheimer’s  diagnosis is going to stretch you in ways you never expected or wanted. Just remember, you can do this. Take it one day at a time, one moment at a time. Embrace the good and process through the bad. You’ve got this.  

*Content based on a brochure by Dr. Alan Wolfelt. 

Father holding daughter's hand as they walk outside

10 Ways to Emotionally Support a Dying Child (and Their Family)

By Grief/Loss, Hospice

A child you care about is dying. You want to offer your love and care, but you’re not sure how to go about it. Whether you are a parent, friend, or caregiver, may this guide help you turn your care and concern into action.

When a Child is Dying

In our hearts, we all believe that children aren’t supposed to die. As much as we wish otherwise, the sad truth is that children do die. Confronting this difficult reality is the first step you can take toward helping a dying child. It’s going to take time, so for now, try to accept the reality of the child’s medical condition, if only with your head. You will later come to accept it with your heart.

Little boy in bed checking his teddy bear's heartbeat with a stethoscope

As you navigate through a heartbreaking situation, may these 10 insights serve as a guide to loving a child (and their family) through one of life’s most difficult times…the loss of a child.

1. Don’t Underestimate the Child’s Capacity to Understand

Children have the capacity to understand more than we give them credit for. Like adults, they deserve our respect and compassion—and our honesty. Sometimes adults, in an effort to protect themselves, assume that children are incapable of understanding or should be protected from the truth. These adults often don’t talk directly to dying children about their prognoses, which can leave the children feeling alone and isolated.

Children can cope with what they know. They can’t cope with what they don’t know. Dying children deserve an atmosphere that creates open, two-way communication. Many terminally ill children will go back and forth between wanting to know details about their illness and not wanting to acknowledge they are even sick. It is critical to follow the child’s lead. Always listen first as you participate in open dialogue about any feelings, concerns, or questions they might have. If they ask something and you don’t know the answer, simply say, “I don’t know.”

Child sitting on bed with mother kneeling and talking in a loving way

2. Be Honest with the Child About Their Coming Death

As the child comes to comprehend their illness and its severity, explain to them that they will likely die, making sure to use language they will understand. The conversation may be the hardest thing you have ever done, but honest love is what a dying child needs most.

Depending on their age and developmental maturity, they may not immediately (or ever) fully understand what their illness means. But they will begin to incorporate the notion of death into their remaining life and will have the opportunity to think about it and ask questions. They will also have the privilege of saying goodbye.

Do not try to protect the child by lying about their condition. If a dying child is told they are going to get better but everyone around is acting down and defeated, they will notice. This may make the child feel confused, frustrated, and perhaps angry.

Instead, show your love and respect by being honest and open with them and helping them understand that they are dying.

Father holding daughter's hand as they walk outside

3. Encourage Open Communication, But Do Not Force It

As caring adults, we should encourage honest communication between the child, caregivers, family, and friends. However, we should never force it. Children will naturally “dose” themselves as they encounter the reality of the illness in their life. In other words, they will accept the reality of their circumstances in small doses over time. They aren’t able to take all the information in at once, nor will they want to.

Answer only what the child asks. Don’t overrespond out of your own anxiety. Remember—children will determine with whom they want to share their pain. Often, a child wants to protect their parents or other close adults and will adopt a “chin up” attitude around them. This is a normal response and should be respected.

4. Watch for the Child’s Indirect Communication

Children, particularly seriously ill children, are not always direct about their thoughts and feelings. They may make statements, display behaviors, or ask questions that indirectly suggest their understanding or awareness of the situation. These cues reflect underlying needs and deserve loving responses. Pay special attention to the child’s non-verbal means of trying to communicate any needs or concerns.

Mother kissing son's forehead at sunset

5. Tune In to the Dying Child’s Emotions

Aside from the considerable physical toll terminal illness can take, dying also affects a child’s head, heart, and spirit.

While you shouldn’t guess at or make assumptions about a child’s feelings, do be aware that they may experience a variety of emotions. Fear, anxiety, anger, sadness, and loneliness are just a few of the emotions they may feel—one at a time or simultaneously.

These feelings are a natural response to serious illness. Don’t try to help the child “get over” these feelings; simply enter into their feelings and validate them.

6. Help the Dying Child Live to the Fullest

Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, you know you are dying, yet it is your nature to want to live. Dying children often feel this tension, too. If the adults around them have been honest, they understand that they will soon die, but they still want to live and laugh and play as often as they can.

Help the dying child live happily. Do what is in your power to make them comfortable. Create special, memorable moments. Don’t completely abandon your normal routine (this may make the child feel out-of-control and unprotected) but do work to make each remaining day count. Above all, spend time with them. Make sure that the people who mean the most are around as often as possible.

Four children of different ethnic backgrounds smiling while playing outside

Peer relationships are very important to children, and the illness will likely create some social and physical barriers to these friendships. When possible, nurture the child’s friendships when possible. Arrange a special party. Make play dates with one or two best friends. Help two children write letters back and forth when personal contact isn’t possible.

7. Take Advantage of Resources for the Dying

Local hospices are well-staffed and trained to help both a dying child and their family. The hospice’s mission is to help the dying die with comfort, dignity, and love, and to help survivors cope both before and after the death. Other organizations, like the Make-A-Wish Foundation, help dying children find joy in their remaining lives.

8. Support Parents and Other Important Adults in the Child’s Life

A child’s terminal illness naturally impacts everyone who loves the child. Not only should you be supportive of the child, you should also be available to support and nurture other family members and close friends through the grief and stress of the situation. The adult’s response to the illness will influence the child’s response. So, in supporting adults, you are supporting the child.

Perhaps you can be a caring companion to the family and help in practical ways. Offer to provide food for the family, wash clothes, or clean the house. Listen when they need to talk. Sit with the ill child to give parents a break. Offer to babysit the other children in the family. While words may be inadequate, your supportive behavior will be remembered forever.

Holding a friend's hand in a comforting way

9. Don’t Forget Siblings

Don’t forget the impact a dying child’s illness is having on their siblings. Because so much time and attention are focused on the dying child, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are also being met.

10. Embrace Your Spirituality

If faith is part of your life, express it in ways that seem appropriate to you. During this difficult time, you may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourself to be around people who understand and support your religious beliefs.

A Final Word

All children, terminally ill or not, have the right to be nurtured, to be children, and to make choices that impact their lives. There is nothing more difficult for families than confronting the death of a child. As caring adults, we have a responsibility to maximize the quality of life for the child, the family, and friends. May these 10 insights help you lovingly care for each person affected by the death of a child.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping a Child Who is Dying. Dr. Alan Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping children in grief. Published with permission.

Two people holding hands across table, no faces

How to Support a Dying Friend in their Final Days

By Grief/Loss

If you’re reading this, you have a friend who is dying, and you’re probably dealing with a lot of feelings. Facing the death of someone you care about is extremely difficult for everyone involved, but hopefully, these words will guide you toward knowing how you can help and support your friend with loving actions during their final days.

Two people holding hands across table, no faces

When a Friend is Dying

First, it’s important to confront the difficult reality that someone you care deeply about is dying. It may take time to accept the fact of your friend’s impending death. In some cases, it may not be until after death has occurred that you fully and finally acknowledge the reality. This is normal.

If you just aren’t ready (or able) to accept your friend’s coming death just yet, that’s okay. Instead, try to come to grips with the reality of their medical condition, if only with your head. You will later come to accept it with your heart.

Now, let’s talk about six ways you can emotionally support your friend and make their final days precious and meaningful.

1. Give the Gift of Presence

Perhaps the greatest gift you can give your dying friend is the gift of your presence. Particularly if you live nearby, you have the opportunity to demonstrate your support by being there, literally, when your friend needs you most. Visit your friend at the hospital or at home—not just once, but throughout the remainder of their days. Rent a movie and bring popcorn. Play cards or board games. Sit together and watch the snow or rain fall. Your simple presence will say to your friend, “I am willing to walk this difficult road with you and face with you whatever comes.”

Remember to respect your friend’s need for alone time, though, and realize that their deteriorating physical condition may leave them with little energy. Give your friend time alone when they need it.

Downward angle, mom and adult daughter siting on couch, talking

2. Be a Good Listener

Your friend may want to openly discuss their illness and impending death, or they may avoid discussing it entirely. The key is to follow your friend’s lead. Keep in mind that your friend will experience this illness in their own unique way. No two journeys are the same.

Allow your friend to talk about their illness at their own pace. And while you can be a “safe harbor” for your friend to explain their thoughts and feelings, don’t force the situation if they resist. Give them space and time to think and feel what they need to think and feel.

If you listen well, you can help your friend cope during this difficult time. Both your physical presence and your desire to listen without judging are critical helping tools. Don’t worry so much about what you will say. Just concentrate on listening to the words your friend is sharing with you.

3. Learn About Your Friend’s Illness

It’s said that “People can cope with what they know, but they cannot cope with what they don’t know.” You will be better equipped to help your friend if you take it upon yourself to learn about their illness. Consult medical reference books at your local library. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. With your friend’s consent, you might also talk to their physician.

If you educate yourself about the illness and its probable course, you will be a more understanding listener and can prepare yourself for the reality of the illness’s later stages.

friend putting a comforting hand on a woman's shoulder

4. Be Compassionate

As you spend time with your friend, give them permission to express their feelings about the illness without fear of criticism. After all, everyone needs time to vent or express what’s on the inside. But again, let your friend take the lead. Learn from your friend; don’t instruct or set expectations about how they should respond. Think of yourself as someone who “walks with” the dying person, not “behind” or “in front of” them.

Never say, “I know just how you feel.” You don’t. Comments like, “This is God’s will” or “Just be happy you have had a good life” are not constructive. Instead, these kinds of comments are often hurtful and may make your friend’s experience with terminal illness more difficult. If you feel the need to console your friend, simply remind them how loved they are.

5. Offer Practical Help

While your friend may have family around to help, there are many ways you can still assist with the activities of daily living. Preparing food, washing clothes, cleaning the house, watching the kids, or driving your friend to and from the hospital for treatment are just a few of the practical ways of showing you care. Make sure to coordinate with family members so that there’s no added stress from miscommunication.

Father and young son washing a carrot as they prepare a meal

6. Stay in Touch

If you are unable to visit your sick friend due to distance or other circumstances, write a note or make a call or send a gift or make a video. What should you say? Tell your friend how much they mean to you. Reminisce about some of the fun times you’ve shared. Promise you’ll write again soon—and then follow through on that promise. Avoid sending a generic greeting card unless you’ve personalized it with a heartfelt message.

Your friend is likely facing a lot of emotions as they journey toward death. Fear, shock, anger, sadness. No matter how they’re feeling, they need you, your love, and your friendship to make it through the coming days. Use these six actions to show your friend just how much you care and make memories that will be precious to you both.

Sad husband and wife comforting each other

A Mourning Father’s Bill of Rights

By Grief/Loss

Losing a child, no matter their age, is a heart-wrenching loss. Everything changes. As a father, you may feel like you let your child, your spouse/partner, your entire family down. You may feel like it was part of your role as a father to protect your child, and now you’re questioning everything. You may blame yourself (or someone else) for what happened. In your mind, you may replay the events that led to your child’s death again and again. Some days, you may even feel like you’re going crazy. But you’re not crazy – you’re grieving.

As you grieve and work to come to grips with what has happened and how you can move forward, remember that there’s no timeline for grief. You may be tempted to either give in to grief or to push it away and tamp it down as you seek to “be strong” for your family. Try not to give into either of these extremes. Instead, allow yourself to grieve, and don’t rush the process either. As you walk through your own personal grief journey, as you mourn the loss of a child who carried many hopes and dreams, remember these things:

Sad husband and wife comforting each other

You have the right to grieve

As tempting as it may be to push down your feelings, let yourself be sad. Grief is directly related to love. Because you’re a father and you love your child, you will grieve the loss. It’s normal and natural. No one else will grieve this loss exactly the way you do or have the same cherished memories. Take the time you need to truly mourn – to let the pain out – so that you can honor your child’s life and keep your memories together close to your heart.

If you find yourself getting stuck in your grief or having trouble functioning from day to day, you may have developed complicated grief. If you are unable to focus on anything except your child’s death, feel numb or that life has no purpose, or have trouble carrying out normal routines like personal hygiene, consider talking with a professional to help you sort through your emotions so that you can begin to heal.  

You have the right to talk about what’s happened

Talking about your grief will help you heal. You may feel the need to sideline your own grief as you help your spouse/partner or other children but try not to minimize your own feelings. Instead, enter into your grief alongside your family – they need to know the death hurts you, too.

For one father, it will be easy to talk, while for another, it will be very difficult. Find people you trust or another father who has experienced a similar loss and talk with them. Share the weight of your grief. You don’t have to walk through this journey alone – you can invite others in.

Man sitting on bed with head in hands

You have the right to feel the loss in your own unique way

As a father, you’re going to feel a lot of different emotions. Shock, denial, confusion, yearning, guilt, sadness, depression, to name a few. None of these are wrong. They are all normal. In fact, there’s no “right” way to grieve. For every one of us, the experience is different.  

Depending on the age of your child, you may be dealing with guilt or blame. You may be angry at yourself for not watching your child more closely, for allowing them to participate in an activity, for not being there. Or similarly, you may blame your spouse/partner for these things. It’s okay to feel this way, but in order to find a way to live again, you will need to process through these emotions. 

Dr. Alan Wolfelt, a nationally recognized grief counselor, author, and educator says: “You might have the urge to ‘keep your chin up’ and stay busy and wait to ‘get over’ your grief. Yet, ironically, the only way to help these hard feelings pass is to wade in the muck of them. To get in and get dirty. Grief isn’t clean, tidy, or convenient. Yet feeling it and expressing it is the only way to feel whole, once again.”  

So, embrace whatever it is that you feel – don’t push it away. Even though you may want to ignore it or push it away, you must go through the pain in order to move toward healing and reconciliation. And even though you may not believe it right now, you need and deserve healing. 

NOTE: If you do feel that your spouse/partner is in some way to blame for the death of your child, don’t keep those feelings bottled up inside. If you can talk it out peaceably together, do that. However, if you need a mediator, find an objective person (like a counselor or therapist) to help you talk things through.

tired older man wiping his eyes

You have the right to feel wiped out, physically and emotionally

Grief is hard work, but the trauma of losing a child is even more so. You may find it hard to sleep, leading you to feel tired or overwhelmed. Some people even experience physical symptoms like headaches, nausea, and weight loss or gain. Please know – this is a natural reaction. Your body is in distress, the same as your mind and heart. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. Be kind to yourself as you grieve the loss of your child.

You have the right to grieve differently than your spouse/partner

Because we’re all different, no two people will grieve in the exact same way. While your grief may look different than your spouse/partner’s grief, it doesn’t mean you aren’t both grieving. Give each other space and grace to grieve differently. And move toward each other, rather than away, as you process this profound loss in your lives.

Stereotypically, men are thought to be less emotional, and therefore, not as deeply affected by loss. This couldn’t be further from the truth. Our society puts certain unfair expectations on men (i.e. men who cry are weak, etc.), but don’t fall into these lies with your spouse/partner. As a father, it’s so important to model healthy grieving and let your family see that you are also deeply affected by the loss. Being open and vulnerable allows you to all grieve together.

couple sitting on couch holding hands

You have the right to experience “grief bursts”

At times, the feelings of grief are going to appear suddenly and overwhelmingly. This is called a “grief burst.” It could be triggered by many things. You breathe in your child’s smell. Find a photo from a favorite day. Realize that your child will never graduate, marry, have grandchildren, etc. You face a special day, like a birthday, graduation day, or the holiday season. 

The powerful surge of emotion can be scary, but it’s normal and natural. When these bursts happen, honor and acknowledge them; don’t suppress them. Find someone who understands and will let you talk out what you’re feeling. 

You have the right to participate in healing actions

Sometimes, in order to heal, you will need to do more than talk – you need to act. At the funeral or memorial service, share your cherished memories. Mark your child’s birthday in some way. Talk about your deceased child with your spouse/partner and other children. Discuss as a family what you can do to honor your child’s memory. Write to your child on their birthday or on special occasions to share how much you miss them. 

Man laying teddy bear at grave

These are all acts of mourning – the outward expression of your internal grief. As hard as it is to believe, as you do the work of grief and participate in healing actions, you will find a way to move forward. You will never forget your child – nor should you – but you can find the path toward a good life for yourself, your spouse, and your living children. 

You have the right to embrace your spirituality

Right now, your faith is either sustaining you, or it’s feeling shaky. Whatever you’re feeling, it’s okay. If you are a person of faith, find ways to express it that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. Find someone to talk with who won’t be critical of your feelings. Pray. Meditate. Journal. Share what you’re feeling with God; he’s big enough and loving enough to accept and understand whatever you’re feeling, even if it’s anger toward him.

Man holding child on his lap as they look at photographs

You have the right to treasure your memories

Do you remember the moment you found out you were going to be a father? The first time you held your son or daughter? As a father, you have some very special and unique memories that no one else has. Every child needs a father’s love, so your memories are precious, unique, and worth treasuring.

You could collect keepsakes – photos, favorite toys or clothing items, something special between you and your child, etc. Write your thoughts and feelings down. Have a piece of jewelry made to wear in remembrance. Start a tradition that brings you comfort. Talk about your child openly, not only to express your own feelings in a healthy way but to allow your spouse/partner and children the same opportunity.  

You have the right to move toward your grief and heal

While you may be dealing with guilt, shame, blame, or regret right now, remember that you do have the right to grieve and to heal. Dr. Wolfelt tells us that we never get over a death; instead, we learn to reconcile ourselves to the loss. He states, “Your feelings of loss will not completely disappear, yet they will soften, and the intense pangs of grief will become less frequent. Hope for a continued life will emerge as you are able to make commitments to the future…. The unfolding of this journey is not intended to create a return to an ‘old normal’ but the discovery of a ‘new normal.’”

man and woman walking down an outdoor path

The journey ahead is not going to be easy. The loss you’ve suffered is significant and heartbreaking. As you grapple with the loss, grieve in whatever way you need so that you and your family can find healing, peace, and reconciliation.

*Adapted from Dr. Alan Wolfelt’s The Mourner’s Bill of Rights.

Mature woman and adult daughter sad together

A Mourning Mother’s Bill of Rights

By Grief/Loss

As a mother, losing a child is a heart-wrenching loss. Everything changes. You may question your choices as a mother or even your ability to parent. You may blame yourself (or someone else) for what happened. In your mind, you may replay the events that led to your child’s death again and again. Some days, you may even feel like you’re going crazy. But you’re not crazy – you’re grieving.

As you grieve and work to come to grips with what has happened and how you can move forward, remember that there’s no timeline for grief. There is no need to rush the process. As you walk through your own personal grief journey, as you mourn the loss of a child who carried so many hopes and dreams, remember these things:

sad woman sitting at home looking out window

You have the right to grieve

Grief is directly related to love. Because you are a mother and you loved your child, you will grieve the loss like no one else. You carried this child within you. Held them in your arms and tucked them in at night. You also cherished hopes and dreams for your child that are now unfulfilled. The gaping hole left behind will need time to heal.

Keep in mind that mothers tend to take care of everyone else before they take care of themselves. Remember: you have a right to grieve and to focus on your own healing. If you find yourself getting stuck in your grief or having trouble functioning from day to day, you may have developed complicated grief. If you are unable to focus on anything except your child’s death, feel numb or that life has no purpose, or have trouble carrying out normal routines, consider talking with a professional to help you sort through your emotions so that you can get on the road to healing.

You have the right to talk about what you’ve been through

Talking about your grief will help you heal. For one mother, it will be easy to talk, while another mother, it will be very difficult. Find people you trust or other mothers who have experienced a similar loss and talk with them. Share the weight of your grief. You don’t have to walk through this journey alone – you can invite others in.

At times, you won’t feel like talking, and that’s okay. Listen to your needs but don’t give up on expressing what’s going on inside. Ignoring, suppressing, or bottling up your emotions won’t make them go away. In fact, it often makes them more powerful and more likely to negatively affect you down the road.

Mature woman and adult daughter sad together

You have the right to feel what you feel

Losing a child is going to bring out many different emotions in you as a mother. Shock, denial, confusion, yearning, guilt, sadness, depression, to name a few. None of these are wrong. They are all normal. In fact, there’s no “right” way to grieve. For every one of us, the experience is different.

Depending on the age of your child, you may be dealing with guilt or blame. You may be angry at yourself for not watching your child more closely, for allowing them to participate in an activity, for not being there. Or similarly, you may blame your spouse/partner for these things. It’s okay to feel this way, but in order to find a way to live again, you will need to process through these emotions.

Dr. Alan Wolfelt, a nationally recognized grief counselor, author, and educator says: “You might have the urge to ‘keep your chin up’ and stay busy and wait to ‘get over’ your grief. Yet, ironically, the only way to help these hard feelings pass is to wade in the muck of them. To get in and get dirty. Grief isn’t clean, tidy, or convenient. Yet feeling it and expressing it is the only way to feel whole, once again.”

So, embrace whatever it is that you feel – don’t push it away. Even though you may want to ignore it or push it away, you must go through the pain in order to move toward healing and reconciliation. And even though you may not believe it right now, you need and deserve healing.

You have the right to be tired, physically and emotionally

Grief is hard work. You may find it hard to sleep, and as a result, feel tired and overwhelmed. If you are mother to other children, caring for them may also drain your energy. In some cases, people even experience physical symptoms like headaches, nausea, and weight loss or gain. Please know – this is a natural reaction. The body is in distress, the same as the mind and heart. Respect what your body and mind are telling you, especially if you have other children who need you during this difficult time. Get daily rest. Eat balanced meals. Be kind to yourself as you grieve the loss of your child.

Husband comforting wife

You have the right to grieve differently than your spouse/partner

Since there’s no “right” way to grieve, it stands to reason that no two people will grieve in the exact same way. But just because your grief and your spouse/partner’s grief don’t look the same doesn’t mean you aren’t both grieving. Give your spouse/partner space and grace to grieve differently. You’re both hurting – that is a certainty.

You may feel that your spouse is in some way to blame for the death of your child. If this is you, don’t keep those feelings bottled up inside. If you can talk it out peaceably together, do that. However, if you need a mediator, find an objective person (like a counselor or therapist) to help you talk things through.

You have the right to experience “grief bursts”

At times, the feelings of grief are going to appear suddenly and overwhelmingly. This is called a “grief burst.” It could be triggered by many things. You breathe in your child’s smell. Around the house, you find a photo from a favorite day. You realize that your child will never graduate, marry, have grandchildren, etc. A special day arrives, like a birthday, graduation day, or the holiday season. The powerful surge of emotion can be scary, but it’s normal and natural. When these bursts happen, honor and acknowledge them; don’t suppress them. Find someone who understands and will let you talk out what you’re feeling.

Mature mothing laying wreath on grave

You have the right to participate in healing actions

Sometimes, in order to heal, you will need to do more than talk – you need to act. At the funeral or memorial service, share your cherished memories. Create a memory album. Mark your child’s birthday in some way. Talk about your deceased child with your spouse/partner and other children. Discuss as a family what you can do to honor your child’s memory. Write to your child on their birthday or on special occasions to share how much you miss them.

These are all acts of mourning – the outward expression of your internal grief. As hard as it is to believe, as you do the work of grief and participate in healing actions, you will find a way to move forward. You will never forget your child – nor should you – but you can find the path toward a good life for yourself, your spouse, and your living children.

You have the right to embrace your spirituality

Right now, your faith is either sustaining you, or it’s feeling shaky. Whatever you’re feeling, it’s okay. If you are a person of faith, find ways to express it that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. Find someone to talk with who won’t be critical of your feelings. Pray. Meditate. Journal. Talk to other moms. Share what you’re feeling with God; he’s big enough and loving enough to accept and understand whatever you’re feeling, even if it’s anger toward him.

Woman creating scrapbook

You have the right to treasure your memories

As a mother, you have some very special and unique memories that no one else has. A mother’s love is unique and special, so you must find ways to treasure your memories.

You could collect keepsakes – photos, handmade items, favorite toys or clothing items, etc. – and create a memory box or scrapbook. Write your thoughts and feelings down. Have a piece of jewelry made to wear in remembrance. Start a tradition that brings you comfort. Talk about your child openly, not only to get your own feelings out but to allow your spouse/partner and children the same opportunity.

You have the right to move toward your grief and heal

While you may be dealing with guilt, shame, blame, or regret right now, remember that you do have the right to grieve and to heal. Dr. Wolfelt tells us that we never get over a death; instead, we learn to reconcile ourselves to the loss. He states, “Your feelings of loss will not completely disappear, yet they will soften, and the intense pangs of grief will become less frequent. Hope for a continued life will emerge as you are able to make commitments to the future…. The unfolding of this journey is not intended to create a return to an ‘old normal’ but the discovery of a ‘new normal.’”

Young woman thinking as she sits beside lake

Moms, the journey ahead is not going to be easy. The loss you’ve suffered is significant and heartbreaking. As you grapple with the loss, grieve in whatever way you need so that you and your family can find healing, peace, and reconciliation.

*Adapted from Dr. Alan Wolfelt’s The Mourner’s Bill of Rights.

Grandparents, Your Grief Matters Too

By Grief/Loss

In so many ways, a grandparent’s grief following the loss of a grandchild is overlooked and unacknowledgedWe all instantly think of mom, dad, and siblings, but more often than not, grandparents and their grief are forgotten. Today, we’re here to say that grandparent grief matters, too. No matter how old your grandchild was, your grief is real, legitimate, and deserving of support and love.  

As a grieving grandparent:  

1. You have the right to experience your own unique grief 

In so many ways, you’re stuck between a rock and a hard place. You feel a deep sense of grief and loss over the death of your beloved grandchild, and you also feel a responsibility to help your own adult child through their own loss. By all means, help your adult child as much as you can through this devastating loss, but don’t forget that your own grief is real and not something you have to push aside.  

2. You have the right to talk about your grief

While it’s true that you aren’t the parent, you’ve still suffered a deep loss. One of the most common and beneficial ways to process grief is talking about what you feel. Just because you are in a unique position doesn’t mean you have to stay silent about what you feel. Don’t bottle it up. Perhaps your adult child needs to know that this loss has devastated you as much as it has them.   

3. You have the right to feel what you feel 

Grief brings out a wide variety of emotions, and you have a right to feel them. You may feel sad, angry, shocked, or even guilty. There may be a very deep sense that the death of your grandchild is unnatural and unfair, which is true. All of these are normal emotional responses to the death of someone you love, and they are a healthy reaction to the loss you’ve suffered. 

4. You have the right to take care of yourself, physically and emotionally 

As we age, our energy levels decrease, so you may have noticed that you have less energy than you did when you were younger. That said, grief takes a mental, emotional, and physical toll on you. Your inclination may be to help your adult child as much as possible, but make sure to also take stock of your own physical and emotional needs. If you need a nap, take a nap. If you need a brain break, take it. Do what is needed to give yourself as much energy as possible so that you can face the grief journey ahead while also offering a helping hand and caring heart to your grieving adult child.  

5. You have the right to experience “griefbursts 

There will be times when an unexpected wave of grief will come over you. This is called a griefburst. It can feel frightening, but don’t worry, it’s normal. And even though you may feel that your loss isn’t as significant as your adult child’s, try not to compare losses. Everyone is hurting, and you have the right to grieve, too.  

6. You have the right to participate in healing rituals 

After losing someone you love, participating in healing rituals helps you take that first step in the grief journey. By honoring and remembering life, you take time to cherish your memories and share them with others. As a grandparent, you have as much right as other family members to find comfort in your memories and dreams.  

7. You have the right to embrace your spirituality 

For many people, faith serves as an anchor during the tumultuous seasons of life. If you are a person of faith, then fall back on your habits to help you cope with your grief. Meditate. Pray. Sing songs. Write. There is comfort in God’s arms, and you have the right to seek refuge there.  

8. You have the right to search for meaning 

Especially following the loss of a child, you may find yourself asking, “Why did this happen? Why couldn’t it have been me instead?” It’s natural to ask questions and to search for meaning in the loss. Some of your questions may have answers, but some may not. Regardless, searching for meaning is a natural part of the grieving process, and it’s okay to contemplate and consider the questions running through your heart and mind.  

9. You have the right to treasure your memories 

While you may have lived a little on the periphery of your grandchild’s life – not being the parents – you still have a strong connection to your grandchild and many precious memories. Cling to them. Share them with others. Discuss the love you feel and the loss you feel. Your memories are priceless so treasure them close to your heart as you grieve.  

10. You have the right to move toward your grief and heal 

Grief takes time. It’s different from person to person. You will grieve one way and your spouse will grieve another. But no matter what it looks like, you have the right to grieve the loss of your grandchild. You also have the right to heal and not feel bad about it. Right now, the hurt may be too deep, too new, too fresh, but in time, as you do the work of grief and work through your emotions, you will find the path toward healing and reconciliation. Your life is changed forever, but you can still find hope and meaning, discovering ways to honor your grandchild’s life and memory.  

Everything You Need to Know about Death Doulas

By Grief/Loss, Living Well

Have you heard about the growing use of death doulas for the terminally ill? No? Then you’re in luck. We’re going to take a look at what death doulas are, how they help individuals and families, why it’s a growing practice, and more. Let’s get started!

What is a death doula?

You may have heard of a birth doula – a woman who walks alongside a new mother from before birth, through birth, and then following the birth. Well, a death doula does much the same, but for death rather than birth.

Also called death midwives, end-of-life coaches, or even transition guides, these doulas take a holistic approach. They are trained to focus on the physical, emotional, psychological, and spiritual aspects of death, leaving medical to healthcare professionals. Their overall goal is to normalize the experience of death for everyone involved, taking it from an uncomfortable experience to one filled with rich, sweet memories.

So, what do death doulas actually do?

Though many death doulas are medically trained, their focus is not medical care. Instead, they work in partnership with hospice palliative care to ensure that your loved one’s whole person is taken care of on the path toward death. One of their main concerns is to help the terminally ill person have a good death, whatever that may look like. For some, it may mean being surrounded by family; for others, it might mean watching a favorite movie and then sitting quietly with their most treasured people.

In addition to helping people take a measure of control over death by defining what a good death looks like to them, a few other things that death doulas help their clients and families with are:

  • Suggesting ideas for optimal comfort, including giving massages, holding hands, etc.
  • Providing spiritual, emotional, or social support to both the dying and their family
  • Simply being with the dying person, whether to listen, stay silent, read a book aloud, watch tv, whatever they want
  • Educating both the terminally ill person and their family about the process of dying so that they know what’s coming and what to expect
  • Working on legacy projects with the dying, like writing letters to loved ones, taking family photos, creating gifts, writing down life experiences, etc.
  • Offering consistent presence during the final days, easing any fear or anxiety that the dying person may feel and allowing family to take much-needed breaks
  • Encouraging the dying to take care of estate planning, such as completing a will
  • If the family wants, a doula can help plan a funeral or memorial service or provide grief support

Because death doulas often take a holistic approach, they will be familiar with home vigils, wakes, and even natural or green burial options, if these are of interest to you (they will work in tandem with a local funeral home). However, the doula will not pressure you into any decisions; their job is to find out what the dying person wants and advocate for that.

Why is this practice growing?

In many ways, death has become sterile and impersonal, often occurring in hospitals or nursing home care facilities. As a culture, we have come to avoid death. This tendency can cause those who are dying to feel more alone and isolated. With the aging Baby Boomer generation, it’s likely that there will be a rise in the need for alternative care services that may allow more people to stay at home during the end-of-life phase or provide care at hospice or other care facilities. Death doulas may be an answer to fill in the gap needed for end-of-life care. A hospice nurse can only come at certain times to assist while a death doula can be much more available to assist the family, even after the death has occurred.

How do you hire a death doula?

It’s an individualized process. Some doulas have private practices while others work in connection with hospices, hospitals, or other community organizations. But no matter how you find a doula, you should sit down and interview them first. After all, if the doula is going to walk through weeks or even months with you and be privy to intimate details of your family’s life, you’ll want to choose someone you feel comfortable with, who honors your personal beliefs, and is trustworthy.

Before securing the services of a doula, you can review what types of assistance you want (which days/hours of the week, cooking meals, sitting with the dying person, working on legacy projects, etc.). Most often the doula will tailor their work to suit your needs and preferences. So, go over everything before you sign anything. Also, a conversation about compensation will need to occur, with the doula letting you know their current rates. Each doula sets their own rates, so you will simply need to ask.

What kind of training do doulas have?

While the practice is currently unregulated, there are associations that offer certifications. A few learning institutions that offer training are the International End of Life Doula Association (INELDA), Larner College of Medicine at the University of Vermont, International Doulagivers Institute, and Lifespan Doula Association (LDA). While the programs at each institution vary, most death doulas receive 6-9 months of training before they receive a certification.

Janie Rakow, the president of INELDA, says this about the role of a death doula: “We journey with the person who’s dying and their family to help them navigate through the whole end-of-life process. Although hospice is wonderful in the death and dying field, they don’t have the hours and hours and hours that the doulas have to really, deeply, get into this work. It’s kind of an adjunct to hospice where we’re there for them [the dying] to provide emotional, spiritual, and physical support.”

Is a death doula right for your family?

It’s entirely up to you. Look at your support network. Decide if your friends and neighbors will help you through a loved one’s terminal illness. Ask yourself questions: Do I want help? Do I want help from someone I know? Or, would I like to bring in someone with specialized training? Do I have the funds to pay for a doula’s services? Also, talk with the person who is dying and get their thoughts. Do they want someone who will offer consistent support? Do they have projects they want to complete?

Whatever you decide is best for your family is the right thing to do. Right now, most families don’t utilize the services of a death doula. However, if this sounds like just what your family needs, start putting out feelers in your community. You may find just the right person to journey with you.

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