When I first developed the Six Caregiving Stages™ , I tried to tie a family caregiver’s progression along the stages to the caree’s disease progression.
How long does someone typically live after a diagnosis? When does the disease usually advance? How does the family caregiver’s experience shift as the condition worsens?
It was a nightmare.
I also tried anchoring the stages to where the caree lives. Did the caree typically live at home during a family caregiver’s early stage of the experience? Did the stages shift when the caree moved into the family caregiver’s home? Did a new stage begin with a nursing home placement?
That didn’t work either.
Housing transitions happen at any stage. A caree can move to a continuing care community in the earliest weeks of a caregiving experience. A family caregiver can be in the deepest, most exhausting stage of caregiving while the caree still lives independently across town. The location of the caree doesn’t necessarily mean an experience is harder or easier.
The stages wouldn’t cohere around disease timelines. They wouldn’t cohere around housing. Every attempt to anchor the family caregiver’s experience to something external — the caree’s diagnosis, the caree’s address — produced something complicated, inconsistent, and ultimately unusable.
The concept became clear — genuinely clear, impactful, and true — only when I let go of the caree entirely.
When I stopped asking about the caree and started completely focusing on the family caregiver, the concept just bloomed for me.
I had the stages and the keywords in 1997. I had struggled to define the family caregiver within each stage when I tried to define the stages around the caree.
I struggled because it’s not the caree’s experience.
It’s the family caregiver’s. That insight transformed how I discussed and presented the concept.
For the family caregiver, the experience is all about the emotions.
The stages reach everyone because they start with the right person.
Thirty years later, the field is still making the mistake I almost made.
Our space often prioritizes organizing family caregivers by the caree’s diagnosis.
What happens to the family caregiver in that structure?
The daughter managing her mother’s doctors, finances, medication schedules, and worries for three years before getting a formal diagnosis wonders if she actually qualifies for supports. She wonders without receiving. The husband watching his wife’s cognition shift slowly, without a label yet attached, doesn’t fit the framework for services. He doesn’t fit so he doesn’t receive. The adult child coordinating care for a parent with chronic but undefined health issues is invisible to every instrument built around a specific condition. He is overlooked so support remains invisible to him.
When the family caregivers who do qualify — the ones whose caree has a named diagnosis — don’t access support as themselves. They access it as an appendage of the diagnosis. They are the Alzheimer’s caregiver. The cancer caregiver. The ALS caregiver.
Not a person. A category derived from someone else’s condition.
This isn’t to say that connecting with others caring for a family member with a similar disease isn’t incredibly helpful. It is.
But a diagnosis-based connection doesn’t reach the family caregiver who simply feels the impact of the caregiving experience, regardless of what condition caused it.
I once had a family caregiver ask me to connect her to another spouse caring for a husband with stage 3 colon cancer. I assured her I would do my best and then invited her to join a chat just about to start on my online community. She joined and immediately connected with another family caregiver. The two connected because they once traveled extensively in their RVs. Because of caregiving, they stopped traveling. They talked extensively about their RVs, taking their last trip, selling them. They never spoke about their spouse’s diagnosis: cancer and dementia.
Those two women didn’t find each other because they both cared for someone with colon cancer. They found each other because they had both stopped traveling. Because they had both sold their RVs. Because caregiving had taken the same thing from each of them. They recognized each other in that loss.
I provided ostomy care for my dad, who lost his bladder to cancer. A daughter who also manages her father’s ostomy care joined me in a caregiving chat room I hosted. I cannot even begin to describe my relief at finally finding a daughter who understood managing her father’s ostomy care.
We didn’t talk about our father’s diagnosis. I actually have no idea what her father’s diagnosis was. We talked about how we managed the frustration over skin breakdown, sharing close space with our fathers managing a very personal task and how much pressure we feel to get it all right.
We connect over impact because impact affects our lives.
We don’t organize parents by the gender or ages of their child. We don’t create parent categories in parks so that parents of toddlers only gather in one spot. Parents gather. They connect over the experience of parenting.
We need to create the same experience for family caregivers.
Let’s create space for them to gather. They can connect over the impact of a caregiving experience — the worry, the life they miss, the relationships they manage, the exhaustion of holding everything together for someone else. Not over the diagnosis. Over the experience.
That is the connection we need to prioritize: Giving space for family caregivers to talk about keeping a life during a life of caregiving.
We also then create space for family caregivers to choose their own peer support. Perhaps peer support means connecting to a fellow family caregiver whose caree shares the same diagnosis. Maybe the right support means connecting to a family caregiver in the same workplace. The right support could be talking it out with another in a similar lifestyle, like raising young kids while caring for a family member or caregiving in a rural community.
When family caregivers choose their own peer support, they stay engaged in their lives because the support fits.
More than 400 family caregivers have put a number on the work they do. I’d love to get to 500!! Tell us about your caregiving responsibilities so we create your value.
(Already crunched your numbers? Feel free to share our calculator with others who will benefit from seeing their worth.)
