We have been living with this illness for three years now, and there is fresh grief every week.

We have experienced a lot of loss since this illness, so the grief is always there. Day to day, I try to focus on the things we still have and the precious time that we have together. It sounds cliché, but we are making the most of each day, even if it’s hard.

This resource has been designed to help you understand and care for yourself as you grieve. It was developed by the Canadian Virtual Hospice in collaboration with national grief specialists and people who have grieved losses while caring for someone with a progressive neurodegenerative illness. We are grateful to those who shared their wisdom and experiences. 

About this resource: Grief when caring for someone with progressive neurological disease

This resource offers information a support for people who are caring for others living with progress neurodegenerative illness including Alzheimer’s disease, other dementias, amyotrophic lateral sclerosis (ALS), Huntington disease, Parkinson’s disease, and multiple sclerosis (MS).

If you are caring for someone with an illness that gradually impairs brain and body function, you continually witness and share in the person’s losses while also experiencing your own. When these losses combine with the demands of caregiving, they contribute to unique challenges that can impact your grief, which may have begun when the person was diagnosed and continued as their disease progressed.

You may be providing care to your spouse/partner, a parent, a sibling, or a friend. You may be a full-time caregiver, or you may be providing care as your circumstances allow. You may have other caregiving responsibilities, such as parenting children or caring for another family member.  

You may be experiencing a range of thoughts and feelings that can change as time passes, and you may be feeling alone or isolated in your grief. 

Getting started

We recommend that you review the nine Grief Basics modules found on our MyGrief.ca site:

• Grieving before the loss

• Understanding grief

• How has this loss affected my family and me?

• Moving through grief

• Making sense of intense emotions

• Managing difficult situations

• Caring for yourself

• Do I need more help and where do I find it?

• When life starts to get better

As you read through this information…

You might be reading this while providing care for someone or some time after the death. We encourage you to revisit these resources often as you may only be able to absorb so much at any one time. What you find helpful may change over time. You might recognize your experiences or find that some of them aren’t reflected here. If there is content you believe should be added, please tell us about it in the survey at the end.

As you read this, you may have strong emotions or feel uncomfortable. It’s okay to step away from it for a while, or it might help to talk with a trusted family member or friend. Canadian Virtual Hospice provides online Discussion Forums where you can connect with others who may have experienced similar losses. You can also ask our healthcare team a confidential question at Ask a Professional. You will receive a written response within three business days (not including Canadian statutory holidays).

A note about language

Within this module, we address grief associated with a variety of progressive neurodegenerative illnesses. Though the terminology for each illness is different – as is each person’s experience – our intention is to use common and inclusive language that will be meaningful to all readers.

The term progressive neurological disease or illness and variations of this are used throughout. The terms “illness” and “disease” have been used interchangeably.

Family is used inclusively in this resource and refers to members of a person's primary support network, including biological and chosen family, immediate and extended family, family through marriage, and friends.