Preparing and Presence in Parent Care
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.
The Five Stages of Parent Care
Stage 1: Pre-Care
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
- Potential Issues: Don’t want to talk about it, denial, old family discord
- Relationship: fixed/stable, sometimes distant
Pre-Care is the stage most people miss. They get a call from a hospital discharge nurse who tells them mom broke her hip, can’t go home alone, and is being discharged tomorrow. This is likely the beginning of the next stage (Chronic Care). It is a scramble for information and resources that is only the beginning of stress.
If at all possible, an ongoing dialog should begin now. This is not a single conversation checking off a list of items to get answers from the parent about sensitive issues. It is an open discussion of possibilities and desires that can, over time and through the stages that follow, give everyone a different sense of relationship and presence that can be relied upon as things change. Both the adult child and the family need to grow into new positions in their relationship. It starts with early expression of care and intention regarding aging and a lot of listening. In the end, a kind of trust needs to emerge where parent begins to allow child to take on responsibilities, and the child trusts they know what is desired and have enough of a connection to handle what is to come.
Money, housing, caregivers, legacy, and the larger picture are all difficult discussions. Parents can stubbornly refuse to talk (or agree but never act). They can distrust the child’s motives. They may take on a position of denial not wanting to lose of independence. Being questioned may be feared, and a general attitude of not wanting to be a burden may prevail for the parent.
It may seem easier to not talk about age and health until there is an issue that needs to be addressed. This may be the reality. Start then with where you and they are at, use current events, and tell them you care, and you want to know what to do as things change.
Stage 2: Chronic Care
In this stage:
- Parents are: Fragile, dependent on increased support, in and out of crisis
- Children are likely to be: Awakened, stressed, resistance, “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
At some point a medical issue or general frailty requires attention and progress monitoring. Parents may enter this stage through a crisis, yet ultimately, they are stabilized into a situation where they can live with increased support. Increasing dementia, falls, degenerative disease, cancer, or slow degradation of the body may be taking place. Or they may simply not be able to carry out everyday tasks by themselves. Regardless, in this stage the list of chronic issues tends to grow over time. Without solid information, resource planning, and honest communications, both the parent and child will likely move in and out of crisis.
Entering this stage, immediate issues about living assistance, emergency response, and health care management usually demand attention. Over time, both adult child and parent may experience loss of independence and an awareness of the inevitability of end-of-life begins to set it. Resistance, a focus on full recovery, difficulty with felt helplessness, and fear are not uncommon. A grief process (particularly when there is dementia) may begin as well.
If not previously done, the caregiver children should be informed about financial and estate plans, advanced health care directives, and medical progression/prognosis. Likewise, their role needs to be articulated and solidified. This is why conversations about intention, quality of life, and end-of-life wishes are more than appropriate. Everyone needs to know what is important to the other.
This stage is where changes in relationship and associated stress manifest strongly. The child is taking on responsibilities and the parent is losing independence. While positions change in the relationship, stress for both grows until each recognizes and finds a means to deal with their new position. Also, often it is not just one child and one parent involved. Siblings, spouses, and step parents have their own experience of events taking place and move at their own pace (within their capacity to understand and change). This all stresses the family as the “family system” will resist rearrangement.
Stage 3: End Stage Care
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
Eventually, the parent physically will not be maintaining stability even with increased support. A roller coaster of crisis and reprieve may be experienced as the medical support continues to offer solutions to address the new symptoms presenting. At some time, it becomes obvious that the parent has a clear terminal status. This may be a brief or prolonged stage depending on the medical issues playing out.
Ultimately, a shift to palliative care stance is made and the opportunity for summing up presents itself. This is a time of vigils, gatherings, and final expressions. Too often, family has short notice to respond. This is in part because health status can change rapidly as physiological systems fail. It is also because medical professionals are oriented to preserve life and will have more interventions to attempt. Finally, the senior and the family often feel that accepting a terminal status and moving to comfort care is giving up. So they fight until there isn’t much time left.
This will likely bring deeper experiences of shock, anger fear, denial, and grief. Some of the most difficult decisions need to be made in this time and often without the parent’s full participation. Stress and raw emotions may reveal the depth of unresolved matters in the family. At the same time, the care being provided and the process of summing up can provide deep and valuable moments, for both the parent and the child caregiver, aiding in brining greater acceptance and a pulling together of the relationship.
Stage 4: Death and Memorializing
In this stage:
- Parents: Passed.
- Children are likely to be: Overwhelmed, distracted by arrangements and community, incredulous, 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
Immediately following the parent’s passing, many activities need attention and caregivers are in shock. For adult children, there are many responsibilities that do not allow a break. In shock, overwhelmed, and distracted by arrangements and concerned community, the real nature of loss takes time to set in.
Hopefully, prior to their passing, there have been conversations among family members about memorializing the parent and general plans are in place. Many find it important to rely on ritual and established traditions from their parent’s regularly attended church, synagogue or mosque. Although the parent’s tradition may not be their own, many times children will see it appropriate to hold a service that their parents and their parent’s community would want.
However, for some whose parents never religious, or where members of the family have significant difficulty feeling connected to the parent’s religious affiliation, some ritual must be created or given a mark of their own to meet the need of survivors who need something more personal. In this case, earlier discussion among family members will become important when decisions need to be made immediately following the parent’s passing.
Regardless of the nature of the event, gathering and honoring the life passed is an important step in recognizing the end, letting go, and family resettlement.
Stage 5: Relocation/Self Care
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
Final disposition of the estate and arrangements for a surviving parent depends much on the preparations made beforehand. Although more aware and prepared, caregivers sometimes are surprised by events taking place for a surviving parent. The care process may begin anew much sooner than anticipated.
Dealings with siblings in this stage can be mixed. The recognition that they are the only remaining family, and few know the story of you and your parents as they do, can be of great import and comfort. At the same time, they may not remember the same as you do and may need to process their grief in their own way according to their capacities and their experience. One particular point of contention that often arises is regarding the disposition of personal effects. Significant attachments may be noted for otherwise inconsequential items and rivalry between siblings may be resurrected. Go gently and use the presence you have gained in the process to bring honest communication and compassion to your engagement with siblings.
Finally, 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 and find a meaningful frame in which to hold them. There are well understood stages to grief and it takes time to reach a new position where there is acceptance. In many cases, the relationship with the parent does not end and the emotions do not go away. However, they do 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.
This post was provided to Amava by Rob Fellows as a Guest Contributor. 
© 2018 Rob Fellows, Parent Care Consulting and Fellini Arts, Inc.