The last six weeks

Dear Dad,

I miss you. I was looking at the calendar yesterday and realizing why I am such a grumpy grouch (moths are annoying but not that annoying).

This week is when it all started. A year ago this past week L and I had just returned from Quansoo and Mom was a mess.

“Your father is driving me crazy! I am exhausted!” We sent her to a hotel for 5 days and looked at you.

Already inured to your memory loss, constant questions (“whose sweater is that?”), and desire to go to the bathroom every hour (you couldn’t remember when was the last time you went) - we looked closer. We noticed you listed to the left when you walked. Your hands were shaking. Your “normal” short term memory losses seemed more extreme.

“We need to have his neurologist look at him.”

“Okay, how do we do that?”

“Apparently, they tell you to go to the ER and tell them your neurologist sent you.”

While this conversation was happening I fed you meals with my children. A part of me felt as though the sky was about to fall, so I have videos of you wiggling your ears with them at the table, making them laugh and squeal. The twinkles in your eyes shining.

August 19th 2020, we went into the ER. I had my script all prepared to fight my way in to be with you, but all I needed to say through my mask was, “he has dementia, I need to be with him,” and back I went.

Into the cold room we went and I tell them the spiel. They took you back for a CT scan and it all came out. Brain tumor, need an MRI, need to spend the night. I held your hand tight and sang to you while we waited for the litany of follow up tests that followed. Drove behind the ambulance as they transferred us to Vassar and the dementia unit.

You had a roommate. At one point the aide is talking behind the curtain to the other man, “What do you want for dinner?”

louder, “What do you want for dinner?”

“WHAT DO YOU WANT FOR DINNER?”

You yell over to her, “BACON CHEESEBURGER!”

Makes me laugh still.

Because of Covid I was not supposed to be with you more than a 2 hour window. I figured no one was going to come by and carry me out of there, so I stayed. You were very concerned about your watch and your wallet. So I wrote you a note before I left, saying I had them and would see you first thing in the morning. Mom kept that note for months on the side table.

The next day I was yelled at four times for turning off the bed alarm - every time you got up to go to the bathroom the damn thing started shrieking.

I don’t know why it feels important to write this all out to you. You were there, after all, with me when this happened. It was such a whirlwind at the time that it feels as though some of the moments haven’t properly landed.

It was a whirlwind of both logistical doings and emotions together - like boulders being carried by a hurricane and pelting against one’s heart and soul. Like the strong winds were the logistics and the emotions were the objects carried by the winds. Getting the ramp for the house, organizing a 24/7 aide, figuring out more aides with your nocturnal bathroom wanderings, where to purchase water thickener, getting a lift chair - all the logistical doings, the wind.

And then, the emotional boulders being hurled by the strong winds. Walking into your room post biopsy and seeing you with huge white mitts on your hands. They were velcroed on you so you couldn’t remove them. You couldn’t remember why you couldn’t touch your scar and they were afraid you would disturb the stitches. You looked at me with big eyes and held up your hands. The brain surgery had taken away your voice. I took them off immediately, girding myself up to fight the nurses.

“Ma’am, he has to wear those.”

“Not if I am sitting here, I will keep his stitches safe.”

“Okay, well they will put them on him when he is discharged to rehab.”

“He is not going to rehab. I am taking him home.”

“What? But he needs care and supervision. I will need to check with the doctor.”

I am so glad Dad I spoke to the geriatric specialist about your surgery before you went in. She told me what the doctor didn’t (and gave me time to install what was needed). The standard procedure would be for you to go to rehab post surgery.

“Corinna, do I understand correctly that you want to take your father home with you? This is very unusual.”

“Yes, I’ve installed a ramp and a grab bars. We have 24 hour care meeting us at home on discharge day.”

“He will be needing PT and OT.”

“Well, they can come to us. We are going to take care of him.”

The day of discharge, I am shown by the PT man how to help you walk. “Are you sure you want to take him home with you? He needs a lot of care." This nice man looks at me.

“Yes. He is coming home.”

And home we brought you. I moved Mom into the basement and V (thank you V!) came to be with you. We thickened your water so you wouldn’t choke. You would give us thumbs up or thumbs down to answer questions. We received the biopsy results. I called in hospice.

3 am phone calls with the hospice nurses about constipation and anxiety. Meeting the rotating crew of night nurses who would come and give V respite so she could sleep. Watching stubble grow on your biopsy area. Trying to push your wheelchair on the gravel road. Changing your diaper. Picking up a bacon cheeseburger and vanilla milkshake for V to cut into small pieces and feed you. Sitting with you outside as we watch the children play.

Mom’s 80th birthday we all dressed up and had fireworks. You sat inside the house while we sat on the porch and we all raised a glass. The next day you didn’t get out of bed. The lights in the house started flickering at nighttime. Your breathing became strong and loud and you didn’t open your eyes. Then your breathing stopped.

September 30, 2020 - 6 weeks to the day after we went to the ER. You tore off the bandaid quickly, just like when I was a child.

I think this is why people say the first year is hard and that the anniversaries are hard. The trees look the same as when all of this happened with you. The weather has the first crisp in the air. We are eating the same summer crops. I can see you walking down the road as Mom goes to get the paper. Shorts too big, socks and sandals, arms a bit tight to help you balance on your foot that hurts, shuffle step, shuffle step. I wave and call down from the window and your green eyes look up at me, crinkling at the corners as you smile.

I love you Dad. I miss you.