I’m typing this with one hand. My other hand is holding my dad’s hand. And he’s squeezing it so tight. I don’t want to let go of his hand.
He doesn’t want to let go of mine.
Both sides of this are equally heartbreaking and the sum of that heartbreak doesn’t add, it multiplies.
I remember when I was a little girl, I had a pretty majestic view of God. I knew all of the stories from Sunday school and picture book Bibles about God and the miraculous things he had done. Like most little kids, sometimes I would get scared while I waited to fall asleep. I wasn’t really afraid of things like the dark or monsters – I’m pretty sure the room I shared with my sisters didn’t even have a nightlight. But I’d get scared of my own thoughts – thinking about things like forever, eternity, and infinity. I remembered a story I’d heard from my sister about a girl from our church who had felt afraid before being put under anesthesia for a surgery. She had put out her hand right into the naked air. When she tried to push her fingers down she couldn’t move them. It was like another hand was pressed right against hers. Like God had reached out of heaven to touch her hand.
Snuggled under my covers in my nightlightless room, I would reach my hand out from the blankets. I would leave it palm open resting on my pillow next to my cheek. I would wait to feel a strong hand slip into my hand and squeeze it. Sometimes I thought I almost felt it. I would keep my hand very still; I didn’t want to not feel the pressure of another hand if I accidentally moved it.
I’ve always liked my dad’s hands. They are big and strong. His fingers are thick. I have sort of big hands especially in context of my skinny wrists. A lot of it is my knuckles. I’ve learned not try on rings in souvenir shops because of how many times I’ve gotten them stuck on my fingers. But my dad’s hands always made mine feel small – my hands swallowed into his.
They were surprising though. Once I had this silver necklace that had a knot in it. My dad watched me struggle to untangle it and reached over to try. I glanced over the thickness of his fingers doubtful that he would have any success. But with a few quick movements the chain was smooth again, almost like magic.
My dad’s hands have always been warm. I’m one of those types that can’t stay in water more than three minutes because my lips start turning blue. I grew up in Minnesota. I remember having cold hands. I learned different tactics to keep them warm – mittens driving in the car, proximity to heaters while doing homework, and holding my dad’s hands at the dinner table. No matter how cold it got, his were always warm. They never disappointed. Never.
They still are. They are a little thinner now. Not a whole lot thinner, but you can tell a difference. Still, the same hands.
I remember running errands with my dad before I could drive. Whenever he would get into the driver’s seat, his right hand always reached to turn down the volume of the radio. I would turn it back up once we were on the road and he wasn’t paying as close attention. We’d get to our destination and be walking through the parking lot. I liked to hold his hand – while we walked through the parking lot. I liked to hold his hand sitting in the passenger seat next to him too. Once we were riding with the windows down in the summertime. I don’t remember for sure if I was holding his hand, but the moment had that hand-holding sort of feeling to it. The home stretch to our house was one long road. It was straight but had a lot of hills. You’d ride it like the stretch of a tame roller coaster, lazily going up and down – no sharp turns. I knew every marker lining that road. The white house with the bright red door that later got painted over in dark maroon. The two cemeteries, one on each side (one Catholic and one Protestant). The strange house with a blueprint all squares and no triangles. The summer light was perfect on that drive. Out of nowhere a butterfly flew through my open window, fluttered across both our noses, and then disappeared just as quickly through his window. Our brown eyes locked for a second wide with wonder, and I watched his smile open into “oh-shaped” surprise as I felt mine do the same.
My dad sleeps most of the day now. He used to sleep in his red recliner, but a friend gave us a mechanical lift chair so it would be easier to move him to the kitchen and bathroom. He is sleeping in that chair right now.
Sometimes he gets restless. He’ll reach his hands up to the back of his head. Or he’ll try to unfasten the gait belt we have secured tightly around his chest. A few nights ago he kept trying to unzip his sweater to take it off. I tried to explain to him that his zipper didn’t go down all the way and that it wouldn’t unzip any farther. He kept saying that someone was telling him to take it off. Sometimes he reaches out one of his hands into the air. Sometimes it’s for a glass of water on the table. Sometimes it’s for a glass of water that doesn’t exist. When there is a glass, I place it in his hand and help him take a sip. When there isn’t a glass, I hold his hand instead. Sometimes his grip tightens around mine. Sometimes his hand is lax, and I’m not sure he wants me to keep holding his hand.
That’s what is so hard about all of this. The uncertainty. It’s so hard to not know what is going on underneath his sleeping eyes. What he’s feeling.
But while the uncertainty is difficult, it’s not actually the hardest part. Because the thing that is the hardest is the thing that is the most certain.
He’s started to say kind of funny things. One morning he was talking what seemed to be nonsense about being ready to roll, traveling, and petunias. We’re not sure what he’s trying to tell us. A different night we were watching a baking show on Netflix and clear and loud he said, “What do you think about that word ganache?” It was the first full sentence I could remember him saying in a long time.
When we try and move my dad out of his chair, we’re not always sure if he’ll be able to stand up when we ask him. Sometimes it takes three or four tries to get him up. He’ll push against us breathing hard as we fight collapsing under the weight of his body that his legs can’t hold. Other times, he gets up on the very first try and moves his feet exactly where we tell him. But whether he is able to stand or not, I am always amazed by his strength.
I’ve been giving my dad his medication for a few years now. I used to joke and ask him if he was ready for his snack because there were so many. He would give me a look part annoyance and part something else that I can’t quite name. But all the same he’d open his hand, toss the entire handful of pills into his mouth, and swallow them with one sip of water. Once he missed one tiny blue oval and our dog got to it before we could pick it up off the floor. Since then we’ve started to put the smaller pills into his mouth for him. A few nights ago I was doing this when he started chewing. I told him to stop chewing and swallow them whole. He made a face at me and hocked them all right from his mouth. They sprayed into the air and landed on the flowered tablecloth. My aunt said we should ask the hospice nurse about getting a liquid form of his seizure medicine. But so far it hasn’t happened again. He does have trouble swishing and swallowing his medicated mouthwash though. His muscle memory is so strong. When you swish you spit. When you drink you swallow. He tends to either drink the mouthwash or spit it back into the air. Swish and swallow is pretty counterintuitive if you think about it.
In some ways we were told the things we could expect. Fatigue. That he would start sleeping a lot. There would be vision changes and eventually he might totally lose his sight. That he would get weaker and more confused. We were certain all those things would happen. But as it’s happening, each day we have feels so uncertain.
I feel so tired. I’ve been getting home from work and sitting in my car with the music playing a few extra minutes after I’ve already turned off the engine. I don’t feel ready to go inside. I’m not sure if my mom and sister will have had a good day with him. If my mom was up too many times in the night or didn’t have enough time to get in her afternoon nap. If his strength is waning even more and he’s not getting up to eat at the table anymore.
Once I’m inside the house it feels different. Sometimes when he is restless or even when he’s not, I sit in the wheelchair we have placed next to the mechanical lift chair where he is stretched out with his eyes closed. I like holding his hand. Just like I’ve always liked holding his hand. I don’t ever want to let go. I want to keep holding his hand. For as long as I can.
I start crying when I think about all the times I won’t be able to hold his hand when I desperately want to. For all the times I will want him to be there but he won’t be able to. Again, the sadness multiplies because I know how much he wants to be there too.
When I was a little girl our family went to a Baptist church. The sanctuary was full of wooden pews topped with velvet cushions. I remember sitting in the shadow of my dad’s shoulder on one of those pews. The pastor would be trucking through his sermon and I’d be looking at the designs on the stained glass windows - I always liked the one with the white dove the best. Sometimes he would hold my hand. We had a secret code.
Three squeezes – I love you
Four squeezes – I love you too
Two squeezes – how much?
One squeeze so hard you feel like you’re hand is going to break – so so so much
That’s the kind of love I’ve been loved with. The break your hand I’m holding it so tight sort of love. You can feel it. I feel it now. Holding my dad’s hand.
Oh I just want to keep holding his hand. I don’t ever want to let it go. I want to feel his fingers squeezing mine tight. And after his hands are gone, when they’ve lost their warmth… I want to reach my hand out into the naked air and know his hand will find mine there. Just like when I was a little girl falling asleep afraid of words like forever, eternity, and infinity.