Caregiving Phase One: Grandpa
My grandfather was my first real experience with caregiving.
And goodness, did I get a lot of things wrong.
That may sound strange coming from someone who had already spent years working as an LCSW, care manager, and therapist. I understood care plans. I knew how to navigate systems. I knew the questions professionals were supposed to ask and the resources families were supposed to explore.
What nobody had prepared me for was the other side of that professional world.
The family side.
The emotional side.
The side where the person needing care is someone you love deeply.
Suddenly, I wasn't sitting across from a family helping them create a plan. I was part of the family trying to hold one together.
My grandfather has since passed away, and I miss him dearly. Looking back on that season brings up so many emotions because our family came together—and, at times, came against one another.
Caregiving can do that.
Everyone is tired. Everyone has an opinion. Everyone has their own relationship with the person being cared for. Some people see safety concerns before others do. Some want to protect independence as long as possible. Some step in constantly, while others simply don't know what to do.
But underneath all of it, we had common ground:
We loved him.
And even when the decisions were difficult, we were willing to keep coming back together to figure out how to care for him.
We started with family providing care in his home. At first, it seemed manageable. But caregiving has a way of slowly stretching into every part of life. Family members still had jobs, homes, relationships, responsibilities, and lives of their own. Eventually, people became tired.
Boundaries became complicated.
There were things some family members allowed because they wanted to keep him happy or preserve his independence. Looking back, some of those choices may have unintentionally enabled situations that weren't always safe or sustainable.
And little by little, the system we had built began to fall apart.
I became very involved in the practical pieces. I bought his groceries because I worried about his nutrition. I monitored his medications and delegated tasks when I could.
Then the house itself began creating problems.
Things would break, sometimes because of decisions he made that no longer made sense to the rest of us. One day, instead of bending down to use an outdoor spigot, he kicked it. That resulted in a significant crawl-space flood.
Money started leaving faster than it was coming in.
He had assets tied up in real estate, but having assets and having accessible money for care are two very different things. I couldn't simply take control of property or finances because I believed it was necessary. There were legal processes that had to be followed.
He didn't qualify for long-term-care Medicaid.
He didn't have long-term-care insurance.
Other financial resources that might once have helped had been cashed out years before.
There was also a relationship in his life that brought another layer of concern. I believe the woman he was dating cared about him, but I also worried that his vulnerability created opportunities for him to be taken advantage of.
Eventually, Grandpa came to live with me.
I wanted it to work.
But love doesn't automatically make a home safe.
His behaviors became increasingly difficult to manage. He was a large, physically strong man. His memory might have been fading, but his strength certainly wasn't.
Before dementia, my grandfather had been what I would describe as a gentle giant.
Dementia sometimes changed that.
There were moments of anger and behaviors that didn't resemble the man we had always known.
One of the strange pieces of the disease was that he rarely seemed to remember who I was.
But somehow, he remembered my husband.
Those are the kinds of things dementia teaches you to stop trying to make sense of.
Eventually, safety became more than our family could manage at home, and a nursing facility became our final move.
Then COVID arrived.
Visitors were restricted, and suddenly we could no longer see him the way we had before.
His decline during that period was significant.
That part of the story is still hard for me.
The nursing facilities also quickly learned that I wasn't exactly the quiet family member in the corner.
I knew too much.
I knew questions the average family caregiver may not know to ask. I knew what care planning should look like. I knew when to challenge something, when to ask for clarification, and when to suggest another approach.
I imagine there were probably times the staff saw me coming and thought, Here she comes again.
But I wasn't trying to be difficult.
I was trying to protect my grandfather.
And throughout it all, our family continued showing up. I remember my parents visiting him often.
Then, somewhere in the middle of everything we were already carrying, my mom began noticing changes in my dad's memory.
And I remember thinking:
We cannot catch a break from this illness.
So here we are.
Another generation.
Another caregiving journey.
Only this time, we aren't starting completely from scratch.
Grandpa taught us things we never wanted to learn.
He taught us about family caregiving, exhaustion, boundaries, safety, finances, long-term care, advocacy, grief, and the painful reality that sometimes loving someone means making decisions they may not understand.
He also taught me something professionally that no textbook, degree, clinical position, or care-management role ever could:
Knowing the system is not the same as living inside it.
Maybe that is part of why our family's journey eventually grew into something bigger.
If dementia was going to keep finding its way into our family, then perhaps we could take what we had learned—the good decisions, the mistakes, the tears, the arguments, the advocacy, and the love—and use it to help another family walking this road.
And perhaps that is where the idea of helping other caregivers truly began.
This is Caregiving Phase One.
This is Grandpa's story.
And this is where mine began.
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