I have been the primary caretaker for my father-in-law (Fil) for the past two years. He’s 86, with rapidly accelerating dementia.
Fil has never been a compliant person. He does his own thing, in his own way, in his own time. I’ve had a relationship with him for more than 30 years, and during that time we have battled more times than I can count. He does not like strong women, thus a major reason for his dislike of me.
I was completely shocked in 2016 when he requested that I accept power of attorney for him if he should become incapacitated. I accompanied him to the attorney, signed the paperwork, and forgot about it.
During the following year he began acting “squirrely” (that’s a technical term our family likes to use.) He would show up randomly or not at all; he would promise to replace the worn out tires on his van and six weeks later would roll up on the same bald wheels. He missed doctor appointments, he didn’t shower or change clothing for weeks. We knew something was wrong, but were helpless to do anything about it.
Then the sheriff showed up on our doorstep with Fil in tow. “Does he belong to you?” For lack of a better answer I said yes. “He backed his van up over a curb, narrowly missing a fire hydrant and a lawn full of children. He doesn’t know his last name or address. We found your info in the glove box. We’re impounding the vehicle. Call this number to claim it. Have a nice day.”
My life changed radically in that moment.
Fil lived with us for a short while, but he refused to sleep in the house. We pulled our camping trailer up to the back patio and created a bachelor pad. He spent the day in the house watching TV and slept in the trailer. Fil had no idea why he was a captive in our home, and kept asking for the keys to his van. We repeatedly explained that the police had suspended his driver’s license, and the van was damaged beyond repair. “Oh” he would reply, and then two hours later we’d have the same conversation. I became his cook, chauffeur, laundress, and maid.
We found a lovely retirement home nearby. Not fancy, not modern, but comfortable, run by a compassionate family. We moved him in; he seemed fine with the decision. After 4 months he got kicked out for striking the manager with his cane. We moved him to a facility where the residents were a little more rough around the edges. He lasted there for 11 months. We moved him a third time, to a memory care facility. The staff there was trained differently; they knew how to handle him, and he was as happy as the situation permitted. He was still a pain, refusing showers, eating raw sugar from the packets on the dining table, emptying his coffee cup into the artificial plants.
I handled all his financial affairs, bought him clothes, shuttled him back and forth to endless medical appointments and physical therapy. His capacity to understand his own life was diminishing, and there were long, awkward periods of silence in the car. He didn’t want to listen to music. The talk radio hosts spoke too quickly. It was too hot/cold in the car. I swear, sometimes I think he made stuff up just to be difficult.
Then one day the realization hit me that he was not choosing to be this way. He had no control over the lost connections in his brain. There were huge gaps in his memory, and he couldn’t process information fast enough to make sense of it. He was losing control of bodily functions like balance, walking, and toileting. Fil released the concept of time. If he couldn’t see the position of the sun he had no idea if it was day or night. He’d eat a full meal then yell at the server for not bringing him breakfast. Simply getting through the day became a perilous obstacle course designed to trip him up at every turn.
My heart went out to him. This was not the fiercely independent man I had known. This was not “the last great pioneer” (a nickname he’d given himself). I now saw him through a different lens. He had morphed into a six foot tall, two hundred pound toddler. I began to feel protective of him, as though I was his guardian. And indeed, that is what I became. I advocated on his behalf with doctors and creditors. I wrangled for special favors from his caregivers. I made the rules bend to his needs everywhere we went.
And yet I complained to anyone who would listen about what a burden he had become, and how much of my time his care sucked up. Many people have called me a saint, but I knew that I hadn’t earned that title.
His caregiver called and said he didn’t look well; he was acting strangely. He was compliant, allowing her to do all her business with him silently, no protests. She was frightened. My husband and I rushed him to the ER.
Yesterday he died.
It was sudden, swift, unexpected. We got that phone call, and 24 hours later, to the minute, he was dead: massive stroke, renal failure, a cancerous tumor the size of a lemon in his abdomen that had gone undetected because it didn’t cause any pain.
I was the only person in the room when he departed. I saw the jagged zig-zag on the monitor begin to skip then gently flatten. I held his hand and told him that it was okay to leave. We’d be fine. It was time for him to move on to his next great adventure. He was unconscious. I will never know if he actually heard me because there was no indication that he had. He simply stopped breathing.
I realized what had happened and acknowledged it, then alarms started going off and the scene quickly became chaos. He had a DNR and my last act of protection was to refuse resuscitation for him. His final wish was to have a pain free death, and I made sure that he got it.
Today, I realize that although people tell me that he was lucky to have me (which he was) I benefited as much as he did. I was forced to see him differently; not as the adversary I had faced down over so many years, but as a vulnerable human being trying to cope with a body that was breaking down and a mind that was deserting him. He was out of his element, and he needed someone he could trust to be strong on his behalf. Instinctively he knew that I was that person, and he was brave enough to ask me to stand up for him.
Despite our past differences, today I understand that it has been my unique privilege to be of service to Fil, because there was no one else in the family equipped to do what I did. I was repeatedly forced to move far out of my comfort zone, and do things I never imagined I could do. That has been a blessing for me, because now I know that I am capable and strong. I’m not a saint, but I am a genuinely good person; I am fiercely loyal; I am intelligent; I am kind. Becoming Fil’s go-to person helped me define who I truly am, and I realize that has been his special gift to me.