Has there been a recent death in your family? Or a terminal diagnosis and a journey into “anticipatory grief”?
It’s a hard journey for anyone; and there are extra concerns when a family includes adults with IDD (intellectual/developmental disabilities). Points to remember:
- People with IDD feel grief, too—and they have a right to it.
- Trying to shield them from pain (e.g., withholding details about the seriousness of an illness) can make things worse.
- Let them ask questions and share feelings.
- No two people process grief the same way; and there is no “wrong” way.
Walking Through the Grief Journey
The following list of common concerns is based on the “Paths” program from Rice University’s Kinder Institute for Urban Research. This program is the result of a multi-year project where Easter Seals Greater Houston, along with various other organizations plus clients and families, contributed experiences, ideas, and feedback.
Paths resources include a 6-video series narrated by disabled adults from the Houston area (this is one of only a few existing resources that involved people with IDD as active co-creators). See also the printable Paths booklet, available in “Easy Read” and “Plain Language” versions.
#1: What Is Grief?
Grief is a complex emotion: the core element is a deep and painful sense of loss. Grief is unavoidable, often inconsistent and unpredictable—and, ultimately, healing.
#2: How Grief Can Feel
Grief not only feels different for different people. It feels different for the same person at different times. Common emotions (which often seem to burst out of nowhere) include:
- Deep sadness expressed by crying
- Anger
- Despair
- Numbness and/or depression
- Anxiety (“Will this also happen to me? To someone else I care about?”)
- With anticipatory grief: stress, fatigue, resentment, sometimes wishing the person would “just hurry up and die”
- After a death from a long illness: relief that the patient (and everyone else involved) is “finally free”
- Guilt (for not having “done more,” for feeling resentment and/or relief)
#3: Caring for Yourself
Most of the above emotions are normal, natural, even healthy. Guilt, however, is toxic—especially since it’s usually false guilt, blaming oneself for not always “being there” and getting everything perfect.
Everyone, especially when dealing with grief or with hospice caregiving, needs to be gentle with themselves and leave space for their needs. Remember the basics of good health: sleep, healthy eating, exercise, prayer/meditation, and enjoying fun activities.
#4: Ways to Honor Your Loss
To the individual, “honoring a loss” might mean:
- Lighting a prayer candle
- Writing memories in a journal
- Playing a loved one’s favorite music
- Creating art projects
- Displaying mementos or inherited items
- Visiting a grave
… or any number of personally meaningful activities.
#5: Choosing What Helps
Every bereaved person needs, at the very least, an empathetic friend who’s regularly available. Professional counseling often helps, too. If the person with IDD already has a regular therapist, keep the therapist updated.
Any of the following symptoms, especially if they persist for several weeks or months, might indicate a need for specialized grief counseling.
- Lapses in concentration, memory, or decision-making
- Withdrawal from family, friends, and favorite activities
- “Self-medicating” in unhealthy ways: alcohol, overeating, reckless behavior
- Threats of self-harm
(If someone threatens suicide, always take that threat seriously. Call 988 for the national crisis lifeline.)
While thinking about “what helps,” remember that it doesn’t help to:
- Push anyone to “snap out of it” or “get over it”
- Expect anyone to resume “normal” activity in just a few weeks
- Minimize the pain with trite statements (“At least she’s better off now.” “You’ll find someone to fill his place.” “Everything happens for a reason.”)
#6: Finding Hope in You
Once initial grief lessens, many people find that sharing a story (especially one that helps others) is a useful tool for long-term healing. Watch the Paths video series for examples of people with IDD sharing hope.
A Note on Probate, Inheritances, Etc.
As if bereavement wasn’t stressful enough, there’s always complicated legal paperwork after a death. Plus, inheritances can affect disability-benefits eligibility.
If you have an adult dependent, or any potential beneficiary with IDD, do the following as soon as possible:
- Designate an executor—preferably someone the beneficiary knows and trusts.
- Know what disability benefits your loved one is receiving or applying for. And know the eligibility rules for those benefits, especially the maximum value of personal assets a receiver is allowed to own.
- If you plan to leave more than the amount allowed for personal assets, put it in a special needs trust.
Additional Resources
- Adults with intellectual and developmental disabilities deserve better grief support (Paths in its own words)
- Breaking the silence (bereavement for adults with IDD, from the professional-researcher perspective)
- Grief and its Complications in Individuals with Intellectual Disability (another research study)
- Grief and Loss in the Lives of People With IDD
- Supporting Individuals on the Autism Spectrum Coping with Grief and Loss