Taking on responsibilities and being present to a parent’s significant aging and end-of-life brings complex and deeply emotional experiences. It’s not just the engagement with their medical issues or finances. It often also brings new experiences of old wounds and a sometimes-shocking vulnerability in new experiences. That’s not to mention difficulty with siblings, your full life elsewhere, and friends who don’t get what you feel.
The way through is preparing and presence. Preparing is about developing plans for situations you can reasonably expect. Presence is about removing reactivity, looking for a compassionate stance, and holding an openness in the moment so you can deal with the unexpected.
Too many people tell me “I had no idea what I was getting into.” Some others tell me planning is a waste of time because there is too much you can’t predict. This means trusting one’s established capacity to problem solve and established personal process for managing and understanding experiences. The issue with such an approach is these are truly tough to manage experiences, and some have no solution.
After more than a decade of supporting others as they engage with their unique parent care journeys, I have come to understand there are five stages to parent care. Each stage is usually entered in crisis or shock. And each stage brings a whole new set of challenges that call for new roles, resources, and perspective. The following brief synopsis may help you prepare and understand where you may need to be present.
Note: The following is an abbreviated version of a longer article. The full version can be found here.
The Five Stages of Parent Care
Stage 1: Pre-Care
The time to begin talking about possibilities and desires with respect to aging and end-of life is while parents are stable, independent and have full cognitive capacity. For many, it may seem better to not talk about it until there is an issue that needs to be addressed. This may be your or your parent’s reality. Start then with where you and they are at and tell them you care, and you want to know what to do as things change.
In this stage:
-Parents are: Stable, self-sufficient
-Children are likely to be: Uninformed, leading full independent lives
-Tasks may include: DPOA/AHCD, emergency plans, conversations about aging, difficult discussions, financial plans, living situation
-Potential Issues: Don’t want to talk about it, denial, old family discord
-Relationship: fixed/stable, sometimes distant
Stage 2: Chronic Care
At some point health or frailty requires increasing attention. Without solid information, resources, and honest communications, both the parent and child will likely move in and out of crisis. Children should be informed about financial and estate plans, advanced health care directives, and medical progression/prognosis. This is where changes in relationship and associated stress manifest. Conversations about intention, quality of life, and end-of-life wishes will be needed.
In this stage:
-Parents are: Fragile, dependent on increased support, in and out of crisis
-Children are likely to be: Awakened, stressed, resistant, “I didn’t sign up for this” or “along for the ride” or “witness” (willing or otherwise)
-Tasks may include: Any and all of Stage 1 tasks, living situation changes, in-home caregivers, assisted living facility move, conservator establishment, counseling, plan review/revision
-Potential Issues: Quality of life concerns, finances, still don’t want to talk about it, fear, loss/grief initiation, loss of independence (by both parents and children), resentment and/or acceptance
-Relationship: Stressed, changing
Stage 3: End Stage Care
Eventually, it becomes clear that the parent has a terminal status. This may be a brief or prolonged stage depending on the medical issues playing out. Stress and raw emotions may reveal the depth of unresolved matters in the family. At the same time, the presence of family and the under 100 process of summing up can provide deep and valuable moments, for both the parent and the child caregiver.
In this stage:
-Parents: Unstable, not maintaining even with increased support, in and out of crisis, terminal conditions.
-Children are likely to be: Confused, committed, resigned, and/or overwhelmed, sometimes myopic
-Tasks: May include: Shift to palliative stance, hospice care, dying at home, skilled nursing facilities, summing up, genealogy, biography, gatherings (individual, family, community), vigil, final expressions, greater acceptance
-Potential Issues: Anticipated loss, unresolved matters, fear, shock, denial, grief
-Relationship: Stressed, pulling together, breaking down
Stage 4: Death and Memorializing
Immediately following the parent’s passing, caregivers are in shock, distracted by arrangements and concerned community, and the real nature of loss takes time to set in. Regardless of how it is done, gathering and honoring the life passed is an important step in recognizing the end, letting go, and family resettlement.
In this stage:
-Children are likely to be: Overwhelmed, distracted by arrangements and community, incredulous, in shock, wounded, relieved
-Tasks May include: Service, ritual creation, spirituality examination, gatherings, community expressions, summing up, family resettlement.
-Potential Issues: No ritual tradition to rely upon, numbness, shock, differences/resentment between siblings uncovered
-Relationship: Ended, beginning letting go
Stage 5: Relocation/Self Care
It can take a good six months before the depth of the changes and the loss are truly felt. Community may provide acknowledgement and support for a time, but eventually, the survivor is left alone to deal with the feelings around the experience. The emotions do not go away. However, they can get relocated internally, and the opportunity to see one’s own life differently, accept one’s own mortality, and find a measure of peace can be found in many places.
In this stage:
-Children likely to experience: Grief stages, personal summing up, put away experience and/or new processing
-Tasks may include: Final acceptance, emotional relocation, own death acceptance, spirituality examination
-Potential Issues: extended grief, letting go, family discord
-Relationship: Emotionally relocated, spiritual realm
© 2018 Rob Fellows, Parent Care Consulting
Rob Fellows is a member of Amava and the principal consultant at Parent Care Consulting where he provides education, guidance, and coaching about parent care for the benefit of the elder’s children, spouses, and family.
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