I fought to keep my dad at home after he developed dementia. I wish I'd moved him to long-term care sooner.
After years of caregiving stress, moving my father into long-term care restored his dignity and gave our family relief.
Kelly Burch
- My dad was diagnosed with dementia in his early 50s.
- Caring for him while raising a toddler was incredibly stressful.
- When he entered long-term care, we were both happier and healthier.
When I found myself on a first-name basis with the local paramedics, I knew I needed to face the truth: my dad couldn't continue living at home. It was only a matter of time before the minor emergencies that the EMTs were responding to became something major.
That's how I found myself trudging toward an old brick nursing home with my toddler on my hip and my dad reluctantly shuffling behind me. The notorious nursing home smell greeted us as soon as we walked in, and I almost turned around then and there. Instead, I shook hands with the administrator who was giving us a tour.
For years, I had made institutions like this the worst-case scenario. And yet, while I noticed the antiseptic smell and dated decor, I also saw that people were happy and engaged. Soon, my daughter was crawling up the staircase, playing peek-a-boo with residents, and I was thinking maybe, just maybe, this was the right choice for everyone.
I struggled to keep my dad in his home while raising a toddler
My dad was only in his 40s when he became unable to take care of himself due to a severe depression: the type that makes it impossible to shower or feed yourself.
Courtesy of the author
He'd moved in with his mother, but in his early 50s suffered a series of small strokes that led to vascular dementia. Coupled with my grandma's own health concerns, that meant my dad needed more and more hands-on care.
I lived about two hours away from them, but became the de facto caregiver. That meant driving down weekly, or more often, tossing french fries at my baby as I strapped her in for yet another long ride. It was physically and emotionally exhausting, but it felt like my only choice.
Sending him to a nursing home would be giving up, I thought.
Our state's Medicaid program alleviated a lot of worry
Even when my stress was nearing a boiling point, I knew we had one major asset on our side: I wasn't worried about the cost of long-term care. My dad had been on disability for years, and he lived in Massachusetts, which has a robust Medicaid program that covers nursing homes and other supported living.
Courtesy of the author
All of my dad's income — his disability payment — went to paying for his housing before Medicaid would cover costs. He was only allowed to keep a small personal needs allowance of $72 a month. He was often frustrated by how quickly that money went, but to me, this seemed like great value. All of his essential costs, like food, were covered by the facility, and he had a bit of money to spend on a pizza or a pack of cigarettes.
Having adequate care restored my dad's dignity
I moved my dad into the rest home portion of the facility, which provided daily needs, but at a lower level of care than a nursing home (which he didn't yet need). I knew he would be safer in the home than he had been living on his own. But I had no idea how much the facility would restore his dignity.
He no longer needed to worry about medication mixups or his mother hassling him to take a shower. Living in community meant he had accountability in a way he hadn't in a long time. He became the big man on campus among the other residents, and I saw parts of his personality I hadn't seen in years.
He even found love at the rest home. About 18 months after he moved in, he had a commitment ceremony with another resident. They shared a room and later moved into a nursing home, where they lived together until my dad died two years ago.
My dad lived in nursing homes for 10 years — and that was a good thing
Of course, there was sadness: I knew once my dad went into the rest home, he was never going to live independently again. He had his own hangups: more than once, I got a call that he had snuck my grandmother's car onto campus.
I had to grieve for the life I thought he'd have, and acknowledge we had stepped on the road to increasing levels of care. And yet, that was going to happen whether he was living in the rest home or with his mother — but only one of those options provided safety. Once I saw how much my life and my dad's improved when he moved into the rest home, I wondered why we had waited so long.
My dad spent his last 10 years in long-term care facilities. While that might sound like a nightmare to some, it was the best possible decision for our family, and gave us all the space we needed to enjoy our time together.
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