Insights on Caregiving Experience

This discussion centers around John Nuar, a 34-year-old from Canton, Michigan, who created a home for himself and his father, who has dementia. He lived there from 2017 to 2019 before relocating to live with his brother. Nuar became a caregiver for his father in his twenties as his father’s memory began to decline around 2015. He passed away in 2024, following three years in memory care. The conversation has been edited for clarity and length.

I work in supply chain management for an automotive company in Michigan. I have two siblings, and I’ve been caring for my father for quite some time now. It was around 2015 when my father began experiencing memory lapses; he was in his late 60s at the time. By 2017, we realized he needed to move in with my wife and me for more support, especially since he had hip issues that made it hard for him to navigate stairs. He was initially receptive to the idea, but we had to present it in a way that preserved his independence as much as possible.

My wife and I signed the contract for our current home in January 2017. The builders estimated it would take six to seven months to complete. We ended up selling our previous house at the end of August, hoping for a smooth transition. But when the day came, our new home wasn’t finished. So, we lived with my sister and her children for a while, and my father shuffled between his siblings. It was quite chaotic; he often got lost.

There were moments where we tracked his phone only to find him across Detroit. I’d call him, and his responses were often confused; he wouldn’t even realize where he was. It was perplexing. Eventually, we moved into the house we built in late October.

Our routine became somewhat structured—my father would have breakfast with us and dinner at night, while spending his days on his own. We made sure to keep track of his medications and refill his pillboxes regularly. However, there was an incident in March 2019 when he accidentally damaged our garage door but didn’t mention it. I was on a business trip when my wife confronted him. At that point, we felt driving was no longer safe, so we took away his keys.

We did try to encourage him to use public transportation, but it was quite limited where we lived. For instance, we’d drop him off at church and wait for the bus, but he’d forget it was coming, and that would necessitate an Uber. Honestly, looking back, I wouldn’t have chosen this house if I had known what we’d face later.

Using Technology for Safety

We relied on technology to help manage things since we both worked full-time. We installed cameras around the house to monitor him. He also had an automatic door handle, making it easier for us to unlock the door remotely if he locked himself out. However, there were several occasions where he wandered off. The last time, he ended up fifteen miles away at a friend’s house; they called me for a pick-up.

This was a wake-up call that living together was unsustainable given we couldn’t be home all the time. We began exploring our options for care. There’s a voucher program in Michigan, but he was just over the income limit to qualify. We also looked into the PACE program through Medicare and Medicaid, but that didn’t pan out. I can’t help but feel that understanding how Medicaid varies between states would have changed our decisions significantly.

Affording Care

We hadn’t really discussed his end-of-life care openly while he was healthier, which made it tough when things got serious. I regret not having those crucial conversations earlier. We were faced with a choice: either pay privately for care or consider nursing homes, neither of which was feasible financially, especially since he didn’t have much left. The available nursing homes either had poor ratings or required private pay, making costs skyrocket, up to $10,000 a month until a Medicaid spot opened up.

Eventually, we reached a breaking point. My aunt and uncle in Virginia, who lived in a more walkable area, agreed to take him in. They hired a caregiver after two months as his confusion grew. This arrangement lasted about two years, with my relatives deferring most medical decisions to me while guiding me through various choices.

My sister and I tried to give my relatives breaks by visiting once a month, but in early 2021, they realized that home care was no longer viable for him. We reluctantly placed him in a private memory care facility back in Michigan, which was fortunate because they were offering incentives during the pandemic. My wife and I covered the gap between his Social Security and the facility’s costs.

Overall, the facility was decent. However, during his first year, he fell often before needing a wheelchair. Every call from the facility brought a wave of anxiety. Our daughter arrived six months into his stay, stirring a complicated mix of feelings about whether he was truly benefiting from memory care. He lived there until his passing, just under three years later.

The Financial Impact

Ultimately, we spent around $120,000 out of pocket, which initially was about $1,500 a month but escalated to $3,500 as his needs increased. It started at $4,200 but climbed to $6,600. We also rented his wheelchair and managed his Medicare supplement expenses, which added to our monthly outlay. Luckily, our income increased during his care, allowing us to avoid dipping into our savings significantly.

Still, I often found myself anxious about not saving enough for the future. I would do the math, thinking if I saved a little now, it would grow substantially over time. Yet, despite everything, I wouldn’t change what we did.

I often advise others to max out their HSA for long-term care expenses. My wife and I have also made arrangements, including advanced healthcare directives and wills, to ensure our wishes are known should anything happen. We are trying to be more financially prudent for our children’s sake.

There’s definitely an emotional toll involved; weighing financial implications against care decisions is genuinely difficult and remains an ongoing challenge.