In 2023, ALS Northwest launched our Bereavement Program, which provides grief support services to people in our community.
Why did we establish a Bereavement Program?
Thanks to our strong community of support, ALS Northwest has been able to expand our services for the ALS community. It has long been the feeling of Care Services Coordinators and the board that the organization could do more to support the families after their loved one dies from ALS. Historically, Care Services Coordinators have focused specifically on supporting families during the lifetime of people living with ALS. With a Bereavement Services Coordinator, Rebekah Albert, ALS Northwest has expanded the support for people with ALS and their families.
What is the Bereavement Program?
In the first year of the expanded Bereavement Program, we have accomplished the following:
- Expanded and refined the referral process, so that Care Services Coordinators can refer people with ALS, caregivers, or family members to receive support from the Bereavement Coordinator.
- Created a letter series to go out to those who have lost a loved one to ALS to provide individualized support materials.
- Launched in-person and virtual grief support groups, open to all who are experiencing grief and loss.
In addition, the Bereavement Coordinator has one-on-one conversations with people who experience a loss from ALS where she offers resources and explores with them how to go forward in life. They are not counseling sessions, but these conversations create a space to process grief, and discuss what a person needs. These conversations can be anywhere- on the phone, at the person’s home, or at a coffee shop.
The Bereavement Coordinator also supports people who have not yet lost their loved one to ALS. Anticipatory grief refers to feelings of grief or loss that are felt before the loss happens. Folks facing a terminal disease start grieving before or at the time of their diagnosis. Caregivers, particularly, experience anticipatory grief while they shoulder the huge responsibility of caring for their loved one. Rebekah believes it’s important to make grief resources available to the community before their loved ones have passed.
More about our Bereavement Coordinator, Rebekah Albert:
Rebekah Albert has been with ALS Northwest for about a year, working to create a formalized bereavement program and connect with people who have experienced a loss to ALS. The core belief of the bereavement program is that grief is a natural response to loss. Rebekah says, “We don’t get over grief, we learn to live with it, we move forward with it.”
Rebekah is no stranger to grief herself. A huge impact on her life was when her first husband was diagnosed with terminal cancer when she was 25 (he was 29). As her husband spent a lot of time in treatment, living with the disease, Rebekah experienced profound anticipatory grief. She looks back now and knows it would have been incredibly helpful to have someone outside of her personal community who she could confide in and explore her personal experiences with grief and guilt.
Rebekah has spent her career working in nonprofits. She says, “In the back of my mind all these years was this thought that maybe the work that I’ve done navigating my own personal grief and trauma, and my work with people experiencing homelessness, mental illness, and disability… that maybe there would be a point where I could pull together what I’ve learned from all these people who are impacted by profound grief and my own experience.” Rebekah shared that putting together all the experience for these programs is incredibly rewarding.
She says, “I want to walk with people. I want to sit with people as they experience their grief. My goal at all times is to be there as someone who has experienced profound grief and lived to tell the tale. I’ve lived a meaningful life WITH my grief, and I want people to know that whatever they’re going through, I can connect them with resources, or be the resource. Grief is like any horrible injury. There’s the initial trauma, where it takes everything in you just to survive. Over time, healing can take place. There are things we can do to promote and support healing, and there are times during the healing process that can hurt worse than the initial injury.”
Rebekah is honored to do this work, where she learns so much from people experiencing loss. Creating a community for people in the hardest time of their life, who may feel totally isolated, is rewarding. Alongside the profound grief can be the joy and connectedness of life.
If you are experiencing grief, whether you’ve lost a loved one to ALS, are currently a caregiver for someone with ALS, or are a person living with ALS, contact Rebekah for support.