I Can't Remember

“I can’t remember when my grandmas died. Or my aunt.”

I know exactly which aunt we are talking about. Casper and her brothers and sisters were raised by their beloved aunt who lived with them while their parents worked too many hours to feed their large family. It’s 9pm, and suddenly the neurons are firing about family memories and holes are showing up. I am trying to catch up to patch them.

“I can’t remember them dying. How old I was. What happened to them?”

I calculate. Its three hours later in North Carolina. Everyone there in the family is probably asleep. I text anyway. Sandy answers quickly. She can’t remember either right now. My usual font of information has herself been through cancer and is also worn out. I feel guilty for asking. Jay is next on the list. He has to be up for work in only a few hours.

In moments the information is on its way. Then more questions. Clearly, this has been on Casper’s mind and something is up. I get her questions answered, grateful that Jay is so willing to wake up and help. His sister matters to him. There are only four sisters and a brother left now, and the ties that bind have gotten tighter with Sandy’s cancer and Casper’s PD. When I ask for help they always come through. I know I am lucky.

“I want to go home and visit them.”

Uh oh. My mind races ahead. We have graduation and a birthday coming; Charity’s birthday beach trip is tomorrow. When do we need to go to NC?

“Who are we going to visit?” I have learned to ask a lot of open questions recently.

“I want to go home and see my grandmas and aunt. I miss them.”

Bigger uh-oh.  What am I hearing?

“Do you want to visit their graves when we go back this year?”

“No, I want to see them.”

We sit for a bit. HGTV plays on. At least it’s not ER night on TV.

“I just wish I could remember.” She has discovered tonight that her aunt was in a nursing home. She had no recollection of that at all.

Earlier this week Casper took stock of all that has changed. In three years she’s gone from a busy hospice nurse who drove a hundred miles a day, whose patients loved her visits, who had command of her medical skills, to someone whose illness now defines her life. She has even stopped driving voluntarily- for now.

We talk about her memory loss. There is no way not to. Dementia has an ugly way of letting you know what’s missing while not letting you find it. It compounds the losses. Magnifies them.

There are times in life when you simply can’t make the bad go away. It’s there with you, sits with you, and intrudes upon your life in every way. This is one of those times. With Linda it was the ever present shortness of breath and the limits on our life- no elevations above 2000 feet, no flying, take the wheelchair and oxygen everywhere you go, take extra just in case. With Casper it’s don’t forget the meds, take water, keep an arm out to prevent falls, don’t intrude too much, listen for moments when memory fails and a rescue is needed in public, reassure whenever possible.

“We need to fix my card.” Yes, we do. This week’s big issue has been that the cell phone no longer made sense and Casper can’t remember if she can remember her ATM PIN. Did that even make sense? I have reset the phone password, we reworked the phone to make it easier, and tomorrow we will go to the bank to practice the PIN. Casper has been afraid that something will happen to me and she won’t have access to the accounts. There are things in place to protect her, but the fear remains. How can it not? What if you forget the things put in place in case you forget?

“What day is tomorrow?” It’s weekend baby. I’m home. Not a lot of work hours this weekend. You will not be alone. The house will be calm. The kids are going to the beach. They get to have fun and it will be calm here.

“You are not leaving?” When? “Not now? Not tomorrow?” Nope. I’m home, and we will stick close until we can maybe push past this bump. Dementia has hills and valleys. I think tonight we had both. But maybe flat land will show up on Saturday and stay for a while. We see the neurologist this week. Dementia meds are the first priority. We have lost ground, but we may be able to slow it down now.

“I really do need them don’t I?”

Accepting that dementia meds are needed before you are even sixty years old stinks. “Yes, you do. And we will try them all until one works. And then we go back to Hawaii.”

Back to the happy place where the whales spout and breach and the shave ice girl knows her name. And her flavors. And never ever asks what size to make. Some things dementia can’t steal.