Grief/Loss

You are likely familiar with feelings of grief, but did you know that there are different forms of grief? Of course, the experience of grief is different from person to person, but sometimes “normal grief” can take a turn and become something a little different. The four most common variations are disenfranchised grief, complicated grief, compounded grief, and anticipatory grief. Today, let’s unpack disenfranchised grief and the impact it has on grieving people the world over.

First, What is Normal Grief?

Before we dive into disenfranchised grief, it’s important that you understand what normal grief is. In short, grief is your natural human response to the loss of someone or something you love. The emotions of grief vary greatly – sadness, anger, guilt, relief, shock – but they are all normal responses to loss. As much as you may prefer not to feel or deal with these types of emotions, they are actually a healthy part of the grieving process.

Grief is often accompanied by age-old rituals that bring people together to grieve. We hold hands, offer words of support and love, send cards and flowers, make donations, and deliver hot meals to the grieving family. We stand together to support those who are grieving and give them emotional and physical support as they mourn. But what if your grief was unacknowledged, no one stopped to listen to you, and there were no sympathetic words?

Enter Disenfranchised Grief

First coined by Dr. Kenneth Doka, “disenfranchised grief” is complicated, but put in the simplest terms, it is grief that cannot be openly acknowledged, socially sanctioned, or publicly mourned. Often, the grief is minimized or not understood (either by yourself or society in general or even within a family, friend group, or culture). This element of misunderstanding only further complicates the issue.

When your feelings of grief aren’t acknowledged or are minimized, you may begin to feel that your grief is inappropriate, invalid, or unacceptable in some way. And naturally, when you feel that your emotions are shameful, you are less likely to share what you’re feeling but will instead internalize it. Disenfranchised grief is often lonely, private, and you may feel that there must be something wrong with you for feeling this way.

On top of that, disenfranchised grief isn’t black and white; it’s very subjective. Two people may experience the exact same loss, but for one, the loss is openly acknowledged and mourned while for the other, it is minimized. Though they experienced the same loss, for one of them, it was disenfranchised.

To help you get a better grip on this concept, disenfranchised grief typically falls into three buckets. At times, a loss may fall into more than one bucket.

# 1 – The Relationship is Unrecognized

The first bucket is that your relationship to the person who has died is unrecognized. Perhaps the relationship was private or estranged or you are grieving someone you didn’t personally know. In this situation, your loss may not be recognized or understood by others. In some cases, your relationship to the deceased may even be a source of contention and pain to close family members.

With these factors in place, you may feel unable to mourn in the usual way and could end up internalizing the pain because you have no external outlet. When a relationship isn’t recognized, you may not be viewed as a griever so people don’t see or understand the depth of your feeling. A few examples of this are the death of an ex-spouse, estranged relative or friend, celebrity, public figure, or a relationship you kept private.

#2 – The Loss is Unacknowledged or Deemed Less Significant

By far, many forms of disenfranchised grief fall into this bucket. When a loss is unacknowledged (as is the case with many miscarriages) or is deemed less significant (like the loss of a pet), then it falls into disenfranchised grief. Oftentimes, these losses don’t fall into a group’s accepted definition of grief.

Also, disenfranchised grief is fairly subjective. Society may accept your loss as worthy of grief, but your family may not. When your grief is found unacceptable by someone, or even uncomfortable, it may hinder your ability to grieve well and openly, which could cause deep and lasting distress. Some examples of when a loss is unacknowledged or deemed less significant are:

• Miscarriage (or stillbirth, infertility, or a traumatic birth experience)
• Breakups
• Estrangements
• Job loss
• Pet loss
• Divorce
• Death of an adult sibling, step-child or step-sibling, or an unmarried partner
• Grieving the loss of a foster family member
• Loss of possessions or home (i.e. in a fire, natural disaster, etc.)
• Death of a co-worker
• Death of a celebrity
• Deterioration of one’s health

Often, the loss is something people don’t know how to talk about, so it’s generally unacknowledged or avoided (miscarriage is a perfect example) unless you find someone who has gone through the same type of loss. Other times, the loss surrounds something that people don’t think is as significant as other forms of loss. For instance, “Why are you grieving the loss of your stuff when people died in that natural disaster?” Yes, it’s the loss of material possessions, but it’s still a loss of comfort, peace, memories, and perhaps of home and livelihood. That’s significant and valid. Feeling grief over the loss of possessions doesn’t mean you don’t mourn the loss of the people – you can feel both at the same time.

#3 – Stigma Surrounds the Loss

The final bucket relates to losses that are surrounded by stigma in some way, often stemming from the method of death. You feel unable to fully grieve because of the circumstances of the loss. A few examples include suicide, drug overdose, AIDS, murder, or the driver in a drunk driving incident. It could also be grieving someone who is incarcerated, missing, dealing with a mental illness, or who has run away.

The loss could also be stigmatized because the relationship before the loss was not recognized. For example, the death of an ex-spouse could be doubly disenfranchised because the relationship is unrecognized and may also be stigmatized, especially if things are still unresolved between the two parties and their families.

Overall, disenfranchised grief means that what you’re feeling isn’t accepted by someone you deem important. This could be society as a whole, family, friends, or even yourself. After all, you can convince yourself that you have no right to grieve this loss. Unfortunately, that attitude won’t stop the feelings or help you work through them. You may feel judged or criticized by others for your grief, making you feel alone, embarrassed or ashamed. So, what can you do?

Three Suggestions to Help You Move Toward Healing

First of all, if you are going through disenfranchised grief right now, you’re not alone and your grief is valid. You have nothing to be ashamed of or embarrassed about. Grief is a natural response to the losses in our lives – no matter what form that loss takes. Now, let’s talk about three suggestions for moving toward healing as you work through your disenfranchised grief.

Validate the Loss Within Yourself

While it’s helpful to have others validate your feelings, it’s not necessary to move toward healing. The most important thing is for you to realize – within yourself – that your feelings of grief are real and legitimate. It’s okay if the people around you don’t fully understand. The most important person to validate your loss is you. Work toward acknowledging that you feel what you feel and it’s all part of the grief journey.

An important note – the grief that children feel is often overlooked or unacknowledged, so take extra effort to listen, validate their feelings, and offer support to the children in your life who are grieving.

Find Supportive People

As you work toward fully realizing and accepting that your loss is valid and worth grieving, find supportive people to talk to and do life with. You need people who won’t minimize your feelings but will accept and support you wherever you are on the grief journey. You might start with an understanding close friend or family member. Additionally, consider sitting down with a support group or a therapist. Sometimes, you just need to talk with people who understand what you’re feeling and can help you identify it. Once you’ve named your emotions, you can better communicate your feelings to the other people in your life.

If you’ve been dealing with disenfranchised grief for a while, then you might strongly consider talking with a grief counselor or therapist. They can help you understand your feelings, realize that it’s okay to grieve, offer a safe place to express yourself, and provide resources that will help you move toward healing.

Participate in Healing Rituals

Dr. Alan Wolfelt, a nationally recognized grief counselor, author, and educator, often says “When words are inadequate, have a ritual.” Normally, when we lose a person we love, we have a funeral or memorial service to honor and remember them. However, with disenfranchised grief, you may not have the opportunity to attend a funeral. And if you’ve lost something else, a funeral isn’t feasible. However, the principle remains the same – you can participate in healing rituals to help you engage with your feelings and begin to release them in a healthy way.

While there may not be an official ritual available, you can create your own. Box up your ex’s belongings to symbolize that the relationship is over. Write a letter to say all the things you left unsaid. Light a candle or plant a tree in memory of the person. Make a collage of photos. If you’ve lost your home, write down memories you cherish from that time of your life and reminisce. Hold your own memorial. Create a memory box or book with mementos and reminders. Visit the final resting place. Use your creativity to process through your feelings. And the list goes on. Find a ritual that speaks to your needs and do it.

Processing grief is hard work, but it’s so important to your quality of life moving forward. Unaddressed grief can lead to many debilitating concerns, including depression and mood swings. Instead of listening to those who might try to minimize your grief, take time to listen to your feelings, surround yourself with supportive people, and find a way to participate in healing rituals. Whatever grief you’re feeling, no matter what kind of loss you’ve been through, it’s real, it’s legitimate, and you have a right to grieve and find hope for the future.

When we lose someone we love, we experience a wide range of complex and sometimes confusing feelings. These may include sadness, fear, anger, guilt, relief, and shock or disbelief. All of these emotions are normal reactions to loss, and they can vary greatly depending on the person and the type of loss. Having witnessed this spectrum of emotions through his years of walking with families through grief, Dr. Alan Wolfelt, a nationally respected grief counselor, author, and educator, has come to identify six needs of mourning. It is only after these six needs are met that we can move toward healing and reconciliation following a loss.

But what are the six needs of mourning, you ask?

The 6 Needs of Mourning

Everything begins with a meaningful, healing, and personalized funeral or memorial service. The more personal, the more healing. Dr. Wolfelt has found that those who take part in a meaningful service have a firm foundation for their grief journey and “through their own grief work and through the love and compassion of those around them, are most often able to reconcile their grief and go on to find continued meaning in life and living.”

People often mistakenly think of the funeral or memorial service as an act of closure. This isn’t the case. In fact, the service is only the beginning of your grief journey. The challenge ahead of you is to walk through each of the six needs of mourning along the way toward healing.

Let’s look at each need individually and discuss what each one may look like in your life.

Need #1 – Acknowledge the reality of the death

When we lose someone we love, our minds naturally rebel against the knowledge. We don’t want to believe what has happened. We reject reality. But in order to heal, we must confront the truth. So, in some way, you must come to acknowledge the reality of the death. This may mean spending time with the body before burial or cremation, attending the funeral or memorial service, visiting the graveside, or something as simple as intentionally using the past tense when speaking about the person. In time, your mind will accept the reality of what has happened, and you can begin to process through the emotions of loss.

Need #2 – Move toward the pain of the loss

Dr. Wolfelt says, “I have learned that if we are to heal we cannot skirt the outside edges of our grief.  Instead, we must journey all through it, sometimes meandering the side roads, sometimes plowing directly into its raw center.” While the funeral or memorial service gives you a start on confronting your loss, it’s up to you to continue the journey. And that’s what it is – a journey. It will take time. It will take intentionality.

Instead of turning away from what you feel, allow yourself to grieve and heal. This may mean talking to trusted friends about your loved one, writing in a grief journal, going for long walks and talking aloud to your loved one, crying in the dark of night, or venting your anger or frustration by going on strenuous runs or using a punching bag. We all deal with our emotions differently, but as long as you aren’t hurting yourself or others, do what you must to face the pain and let the emotions out. Emotions that are stifled or allowed to fester will only lead to pain down the road, so deal with them now.

Need #3 – Remember the person who has died

In order to heal, we must shift our relationship with the one who has died from one of physical presence to one of memory. To do this, it’s important to actively find ways to remember the person who has died and to honor their legacy. In many ways, you do that by telling the story of your life with your loved one. According to Dr. Wolfelt, “the more we ‘tell the story’ the more likely we are to reconcile to the grief.”

So, be intentional about creating opportunities to share and to remember your loved one’s life. Bring friends and loved ones together for a shared remembrance meal. Don’t be afraid to share the stories of your life – growing up, in school, at work, at play, etc. Also, you might choose to create a memorial item, like a scrapbook, photo book, art piece, composition, or whatever else makes sense for you. As you create and design the memorial item, you engage with your memories and find comfort in them.

Need #4 – Develop a new self-identity

To some degree, our relationships give us an identity. Father, mother, sister, brother, friend, grandchild. You may have heard someone say, “I feel like a part of me died along with him.” This is because we gain some sense of identity from those around us. After losing someone we love, we have to step into a new identity, whether we want to or not.

Perhaps we move from a wife to a widow or from a grandchild with living grandparents to a grandchild without living grandparents. No matter the change, coming to grips with our new role – both in our family and in our other relationships – is an important part of the grieving process. In order to move forward with our lives, we must accept our new role and find a way to live it well.

Need #5 – Search for meaning

As part of the grief process, we naturally question the meaning of life and death. Why did this happen? Why now? What happens after death? The answers you find to these “why” questions will decide your reasons for living and contribute to your search for meaning. The death of a loved one confronts us with an inescapable fact: we will die. And because one day we, too, will face death, we must wrestle with how our lives look today. Ask yourself if there’s something you have always wanted to do or be known for. Have you done it? Why not? Is now the time to get started? Write down your thoughts, talk to friends or family, seek out ways to ask the hard questions, and if you do the work of grief, you will find the answers you need.

Need #6 – Receive ongoing support from others

Lastly, we need each other. We aren’t meant to go through life alone. The funeral or memorial service provides an excellent time to give and receive support, but you will still need support far beyond the ceremony. You may be tempted to work through these needs on your own – don’t. There are moments when time alone is needed, but also look for ways to invite others into your life. Find a group to support you – through church, school, or local support groups. The people around you can offer an incredible reserve of strength, kindness, and encouragement.

These are the six needs of mourning. You won’t necessarily experience them in any particular order. In fact, you may experience several at once. For example, you may sit down with a friend and receive support while also talking about your plans to make changes to your life. In this way, you are meeting needs #5 and #6. You will meet many of these needs quite naturally but still be intentional about facing your loss.

And remember – grief is a journey. There’s no hurry. No set time frame. Sometimes you can move forward after three months, sometimes three years, sometimes longer. The time it takes doesn’t matter. What matters is that you are working at it. You are looking for ways to reconcile yourself to what has happened and finding a way to move forward. Those who don’t find a way to move forward often become stuck in their grief, unable to move. Don’t allow yourself to become stuck – do the work of grief and find a way to continued meaning and new hope for the future. You can do this!

If you are caring for a loved one with dementia, the grief journey for both of you will be a little more complicated. It may be that you’ve lost a mother, but your father, who suffers from dementia, has lost a wife. How do you navigate him through his loss – a loss that he may not always remember – while also walking down the road of grief yourself?

Dr. Alan Wolfelt, a nationally respected grief counselor, author, and educator, has helped many families navigate the difficult journey through grief over the years. Because of his extensive background in helping families, he has identified key ways you can help someone with dementia mourn a loss. These helpful tips will empower you to help your loved one with dementia while also allowing you to grieve your own loss.

Dr. Wolfelt states: “For people with dementia, the grieving process grows more complicated. Their brains, the traffic control centers for thoughts and emotions, literally become clogged, creating dead ends, jams and crashes. Grief is a physical, cognitive, emotional, social and spiritual journey, yet the brain is where all those aspects of the self originate and traverse. Grief is always difficult, but when someone’s brain is no longer working well, it is even more challenging, both for the person with memory loss and for his or her family and caregivers.”

5 Tips for Helping a Person with Dementia Grieve

1. Interact with Empathy

Every person’s journey with dementia is different. As you help someone with dementia grieve, remember that their cognitive and physical condition, their personality, as well as the circumstances surrounding the loss will all factor into the process. That’s why it’s important to operate in empathy.

It is easy to become frustrated or stressed when caring for a person with dementia, but what they really need is your compassion, your kindness, and your willingness to try to understand reality from their perspective. Don’t worry about trying to say the “right” words – your empathetic presence and your support are more important than any specific words you may say.

2. Realize that They May Mourn Differently

Through his experience helping thousands of people through the grief process, Dr. Wolfelt has identified six needs of mourning: 1) acknowledge the reality of the loss, 2) feel the pain of the loss, 3) remember the person who has died, 4) develop a new self-identity, 5) search for meaning, and 6) receive ongoing support from others.

Now, in many cases, a person with dementia is no longer capable of addressing these six needs on their own. That’s where you – their caregiver and loved one – come in. For example, they may not always remember that someone has died, but in certain moments, they may recall it perfectly. When those moments of clarity come, allow the person with dementia to talk about the loss and share their memories, even if they are sharing those memories for the hundredth time.

Any expression of their inner thoughts and feelings is good and helpful, though it may be difficult for you to see. They may exhibit delayed reactions or sudden emotional outbursts. If this happens, try to remain calm. These reactions may be the only way they can express what’s happening on the inside, so witness their emotions and accept them. Above all, actively listen and affirm your loved one with dementia. This is how you can show your support.

3. Include Them in the Funeral Ritual

Whether you have a funeral or memorial service, a graveside service or a scattering of ashes, don’t be afraid to include the person with dementia in these symbolic events. If it’s appropriate, you can even include them in the funeral planning process. Tell them what choices are being made. Encourage them to share any memories they may recall and consider incorporating them into the service. Additionally, while the person with dementia may not remember attending the visitation, service, or gathering, the familiar rituals can offer comfort and support. Consider asking a family friend to sit beside the person with dementia during the funeral events so that immediate family members can focus on their own grief.

On the other hand, if the person with dementia is unable to attend any of the funeral events, there are other options available to help them understand the reality of the death and work through their grief. For example, you can arrange a private viewing. Or, schedule a short service at a place where the person with dementia can attend (their own home or an assisted living facility). You could also take the person with dementia to the cemetery, columbarium, or other final resting place. The more you include them, the more likely they are to retain the knowledge that a loved one has died and can grieve for that loss.

4. Pay Attention to Their Feelings

Because long-term memory is the last to be affected by dementia, your loved one may act as if the person who has died is still alive. When this happens, it’s okay. Consider it part of their memory at work and actively join them in reminiscing. In some moments, they will be completely lucid. In these moments, try to discern any emotions they may be feeling inside and compassionately name them. For instance, “It looks like you may be feeling….” This is a form of empathy and will help them feel understood and cared for.

5. Incorporate Practical Tools

There are intentional acts you can do to help a loved one with dementia through the grieving process. For instance, introduce items that belonged to the person who has died. Allow the person with dementia to handle the items. If their response is comforting, leave the object. However, if they react negatively, remove it and try another one.

Other practical tools are:

• creating a display of photos they can look at and interact with
• using the past tense when referring to the person who has died
• recounting stories that may trigger memories
• listening to music associated with special memories of the person who has died

By including these practices, you help your loved one with dementia do the work of grief.

Helping Them Helps You

Helping a loved one with dementia grieve will not be easy, but it is beneficial. Dr. Wolfelt believes: “Patience, honesty, and, most of all, empathy and love are the keys to helping a person with dementia after someone loved dies. Always remember that though dementia may destroy a brain, it cannot destroy a soul. The soul is where love and grief live, and any efforts you undertake to help the person express what is in their heart and soul will honor what has been most meaningful in their life.”

And while helping a person with dementia grieve may seem like a daunting task – something that takes away from your own ability to grieve – remember that as you help them grieve, you will also do the work of grief. Talking to a person with dementia about the reality of the loss will help you accept it yourself. Sharing memories about the person who has died will help you remember them, too. Witnessing the painful emotions your loved one with dementia may exhibit will help you to face your own pain at the loss. And so on.

Grief is the natural consequence of love. It is exhausting, physically and emotionally. But thankfully, there is no time frame and no deadline for “getting over” a loss. In fact, it’s not about “getting over” a loss – it’s about finding a way to move forward. And that takes time. So, as you help a loved one with dementia process a loss (and as you process your own feelings of loss), don’t feel pressured by an imaginary timeline. Instead, breathe deeply and take the time you need. There’s no rush.

*Source: Supporting Mourners with Dementia, Dr. Alan Wolfelt, August 2019