In episode 6 of The Caregiving Soul, Dannelle speaks with Shanae Rhodes about the feelings of loss and grief when caring for a loved one who is experiencing brain change.
Grief is complex, messy, and rarely a linear experience. When caring for a person with dementia, it feels like we are mourning the person they used to be. As their dementia progresses, we may have a variety of phases of grieving including denial, frustration, anger, guilt, sadness, and finally acceptance. These phases rarely happen in any particular order.
Being open with yourself about your grief and feeling those emotions fully can be so difficult, especially with everything else going on. But it is the first step toward processing these complex feelings and taking ownership of your grieving experience. If you have the opportunity, seek out a support group or therapist.
The frustration of managing this disease and the influx of emotions understandably distracts focus from connecting with our loved one as a person. But this can also be an opportunity to celebrate who they are becoming. Once you have begun the process of grieving and reframing your experience as a care partner for a loved one with dementia, there is an opportunity to find strength and connection through the caring process.
Grieving while still providing care for your loved one is not one-size-fits-all. But knowing that you are not alone is key. Your feelings, no matter what they may be, are valid. You deserve to process and feel any emotion. You can grieve, while simultaneously accepting your current situation and perhaps even finding pathways to gratitude in the process.
Tips for Reframing Grief
- Be open with yourself about your grief and let yourself feel your emotions.
- Seek a support group or therapist.
- Celebrate who your loved one is becoming.
- Know that you are not alone.
- Grieve while also accepting your current situation.
Additional Resources
Help for Caregivers of Family Members with Dementia or Alzheimer’s
- Caregiver’s Guide to Understanding Dementia Behaviors
- Looking After Someone with Dementia (NHS guide)
- Alzheimer’s and Dementia Care: Help for Family Caregivers
- Alzheimer’s and Dementia Care: Tips for Daily Tasks
About Shanae Rhodes
Shanae Rhodes a Registered Nurse specializing in adult care. As a student researcher and founder of My Sister’s Keeper, a virtual health-education platform dedicated to women of color, Shanae is committed to a career in community service and research that advocates for social justice for underserved and ethnically marginalized communities. Shanae’s current research is focused on gaining a more in-depth understanding of the experience of African American women who are dementia caregivers and their mental health.
Transcript
Hello and welcome to The Caregiving Soul. I’m your host Dannelle LeBlanc.
Today we are discussing the feelings of loss and grief when caring for a loved one who is experiencing brain change. Shanae and I talked about what that’s often like for families navigating care and relationships impacted by dementia, so if you have not had a chance to listen to that episode, I recommend you check it out.
Read More
Grief is complex, messy, and rarely a linear experience. When caring for a person with dementia, it feels like we are mourning the person they used to be. As their dementia progresses, we may have a variety of phases of grieving including denial, frustration, anger, guilt, sadness, and finally acceptance. These phases rarely happen in any particular order.
Being open with ourselves about complex and difficult emotions takes courage. Courage means working through our own fear, shame, and uncertainty about how we’re supposed to feel, vs. acceptance of our reality in order to get to what there is to learn from the experience. Connecting with a support group or therapist can help process difficult emotions when we understand that we are not alone in feeling the way we do.
In addition, we’re grieving in a societal environment that tends to discourage expressing sadness. And when we do express sadness, there’s sometimes disapproval or judgement about the validity of our grief when we also express joy or happiness. Our emotional health is better off when we determine ways to be both in a manner that honors our own spirit as well as the person we care for. It can be hard to do out in the world as we still have everyday obligations and concerns. So maybe it’s a song we listen to, a saying we whisper to ourselves, or a favorite dish we make.
For additional resources, I recommend checking out TeepaSnow.com, the Alzheimers Association, and Dementia Friendly America.com (dfamerica.org). These sites can provide guidance and support as you navigate your caregiving journey.
I hope you found this information valuable to add to your caregiving toolbox.
Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including transcripts and relevant resource links.
If you would like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.
The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.
And remember, the right care includes care for you.
Read Less
Recommended this Week
A bonus episode on Square Breathing – A self-calming tool that Shirley and Dannelle discussed in Episode 6.
How to best support African American women and women in general who are dementia caregivers.
