In the space of one year, I became caregiver for my dad, aunt and husband. It didn’t happen all at once. First, there was the phone call from Dad’s neighbor, letting me know Dad had fallen and been taken to the hospital by ambulance, Aunt going with him. I knew then that my life had changed, but I didn’t know how much.
Though Dad only came away with bumps and bruises, the real monster made itself known on that visit. Alzheimer’s.
The disease is progressive, and it came as no surprise when the doctor told us Dad had been “very sick for a very long time. He’s very good at hiding it.” Dad was clever and proud, and had vehemently denied he needed help. That wasn’t an option anymore.
Three times a week, I sat with Dad during his dialysis sessions, then again while we waited for medical transport. He’d tell me how he didn’t want to go back to the nursing home. I’d hug him, tell him I loved him, and that it was only as long as he needed the extra care. I corrected any staff who used the term “nursing home,” because that would upset him. He preferred “where you’re staying right now,” so I didn’t allow any other term, within my earshot.
As much as it ached to put Dad on the van after every session, I also felt a sense of relief. I knew where he was, and that he was in good hands.
Then it was time for the next phase of the day; phone calls.
During my walk from the dialysis center, to the house where I cat sat, I checked in with Aunt, alone in the two story house while Dad was away, between calls from and to social workers, doctors, visiting nurses, financial people and more.
Aunt didn’t want to be a bother, so we didn’t know all of her medical needs until she, too, had an emergency. A fall down the stairs -- would she have fell if Hubby or I had been with her? If we’d strong-armed her into a health aide, even though she didn’t want to deal with anyone outside the family? -- left her with bruises, broken ribs, and a huge dose of anxiety that Dad would be angry at her if he knew she’d been careless.
She begged me not to let him know she was in the hospital, and, out of concern for her mental health, I agreed. Then I went upstairs to visit with Dad. Her whereabouts didn’t come up, and she rested easy. That time.
Juggling wasn’t always that easy. Father’s Day of that year, I had to leave Dad in his hospital room, after our celebration, because I had to go see Hubby in another hospital in another state.
My normally healthy husband, then in his mid-30s, was felled by a series of sudden and violent asthma attacks. We learned quickly that “thunderstorm” meant “hospital,” no exceptions. This led to the creation of the notebook, where I would catalogue everything I could think of surrounding the attack: what time of day, the weather, what he’d eaten, if he’d had his medications, time of onset, immediate aid given and its effect.
There is no sound that brings greater relief than a siren when you need a first responder. The sudden shift in Hubby’s health meant that, when I needed him most, I didn’t have my partner to run interference or lend support.
I felt angry about that, and I felt guilty about feeling angry. He couldn’t breathe, and I wanted my hand held? Selfish as it may sound, yes. Both those things could be true, and it didn’t make me a bad person. It made me human.
Caregiving is the most intensely human experience I have ever had. I’ve been lonely, afraid, grateful, hypervigilant, and seen, up close and personal, the line between life and death.
Saying goodbye to Dad in the ICU when we removed life support, as per his wishes, my main focus wasn’t my own loss, but how Aunt was handling the loss of her favorite person. Was she really OK to spend the night in their home, alone, as she wanted?
I was needed at my home, as Hubby was fresh out of the hospital himself, and upset that he couldn’t say his goodbye to Dad in person. Aunt or husband, who needed me more?
Aunt was able to handle her own meds, so a family friend drove her to her home and me to mine. Hours later, I sat on the bedroom floor, in the dark, telling the ICU nurse I understood she had called to let me know Dad had died, but I couldn’t talk to her. I was assessing Hubby’s asthma attack.
Even gasping for breath, he asked if Dad had died, and I had to make the judgement call. Yes, I told him, and, once we determined this wasn’t a 911 night for him, grieved together. He was with me when we did the same thing for Aunt, and, that night, he took care of me.
Hubby’s health has had ups and downs since then. We’re currently in an up; I am thankful for that.
I am aware, keenly so, that caring for one relative, when needed, is different from caring for three at the same time. There’s no lingering fear that I’ll be called away from one emergency to tend to another, for one. And, after several years, I am able to carry a phone and not live in mortal terror that every sound it makes is a new emergency that I need to solve Right This Minute.
Caregiving gave me the opportunity to experience the strongest and weakest parts of myself and those I loved most, intimate and unfiltered. It was precious. It was hell. I would do it all over again.