1. develop my ALS caregiving toolkit
  2. Processing Grief

ALS and Loss


Grief is one of those emotions that is heavy and complex and the experience looks different for everyone. Often when we think of grief, our minds go to the loss of life. In reality, grief is a natural response to the loss of anything that holds significance in our life. You can also feel grief before a loss takes place; when that happens, it’s known as anticipatory grief. Understanding the different aspects of grief and loss can offer insight into your experience as you or your loved ones face ALS.

ALS & loss

An ALS diagnosis brings incredible loss. From the very beginning, it can feel that this disease takes away what we cherish and many things we once took for granted. Naturally, with such unending loss, comes grief. Grief can take on many forms, such as avoidance or anger. And with each loss in physical function that you or your loved one experiences, you may feel varying degrees of sadness and anxiety. 

Remember, whether significant or seemingly minor, a loss is a loss. If you find you’re struggling with a specific loss, try to think of what the loss means to you and how it has impacted your life. Know that it’s okay to not be okay.

Anticipatory grief

When a person is diagnosed with a fatal illness, it’s common for them and their loved ones to experience grief as they anticipate the loss of life. While the stages of anticipatory grief can be similar to those after the death of a loved one, it often can look or present quite differently. Elisabeth Kubler-Ross, M.D. and David Kessler illustrate these differences in their book “On Grief and Grieving.” Below is an excerpt: 

“Anticipatory grief is generally more silent than grief after a loss. We are often not as verbal. It’s a grief we keep to ourselves. We want little active intervention. There is little or no need for words; it is much more a feeling that can be comforted by the touch of a hand or silently sitting together. Most of the time in grief we are focused on the loss in the past, but in anticipatory grief we occupy ourselves with the loss ahead.”

Coping with grief and loss

Grief is a very personal experience and can look different depending on our background and values. While many of us may be familiar with the 5 Stages of Grief, which include denial, anger, bargaining, depression and acceptance, David Kessler recently introduced a critical sixth stage — finding meaning. 

Although it’s impossible to put the process of grieving into a neat package, these are recognized experiences felt by those faced with loss. You may experience more than what is outlined in the stages or experience multiple stages at the same time instead of in a straight consecutive order. Understanding grief is one thing, but how do we cope with something as complex as grief and loss? While the pain of some losses may never go away completely, there are things you can do that can help.

  • Give yourself permission to grieve.
    • Denial, anger and sadness are normal responses to loss. Those feelings are part of the grief process. It can feel uncomfortable to give in to these emotions, but taking the time to truly experience them can also be healing. Remember, there is no right or wrong way to grieve — be gentle with yourself.
  • Talk about your loss.
    • When we talk about our experiences and emotions, we have the opportunity to process them in a way that isn’t possible otherwise. Talking about it allows you to recognize feelings that you may not have realized you had, and can help you deal with them. You might also find you’re not the only one feeling this way. Not talking about it can lead to feeling isolated and fearful, and can also take a toll on your physical health.
    • Helpful hint: Sometimes the hardest part is sharing how we’re feeling with those closest to us. If this is the case for you, consider talking to someone neutral first, such as a counselor, medical provider or your faith leader.
  • Find meaning.
    • It’s incredibly difficult to process loss, and it may take you a long time to come to terms with it. Learning to accept loss is an essential aspect of healing. Finding meaning in your life after a loss can be challenging, and you may feel like you’re leaving memories of your loved one behind. However, beginning to find meaning can often include identifying ways to honor your loved one, rediscovering self-care, following your passions again and more. In David Kessler’s book Finding Meaning: The Sixth Stage of Grief he notes “Loss is simply what happens to you in life. Meaning is what you make happen.”

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