mother daughter family dementia coping

mother daughter family dementia coping

Tuesday, January 26, 2016

“It was the smell of the sage,” my mother told me twenty-five years ago. “I was in a place, like by the lake where I would hunt ducks with my Dad when I was a kid. It was dawn and the fog was so thick I couldn’t see through it. But I knew I was safe there. It was very safe. I could feel the sand under my boots as I walked toward the water.

“I could smell everything so clearly. Everything in the woods, the sage. The sage smelled so good. I knew if I could just get to the water…”

But that was not really what was happening. What was really happening was my mother was moments away from death, an accidental overdose of painkillers as she was coming out of a surgery. She was so tiny. And the dose was too great for her little body. We all stood outside her room as the hospital staff barreled into her room with their paddles and probes and beeping monitors. Screaming her name. Trying to get a response.

“People kept calling my name. It was annoying me,” my mother recalled. “I knew if I could just get to the water, something amazing was going to happen. The fog opened up, and I could see in front of me. The lake, was magnificent.”

She didn’t make it into the water. Twenty-five years ago medical staff yanked my mother away from the shore, and she came back to us.

Early this morning, before dawn, my mother, Veraine Alcyne Harrington Muñiz, stepped on to her sand, walked bravely and earnestly through the breaking fog, the smell of the sage surrounding her in every breath she took, and stepped gloriously into her magnificent lake. And she didn’t look back.

Thanks for everything, Mom. 

Sunday, January 24, 2016

Red plastic drinking glasses are kept in the second cupboard to the left at my mother’s home. Checkered coffee mugs with cows on them are in the corner. Silverware is in the center drawer. I know this by heart now. I have spent the majority of the last five days there, some times morning through late night. And I have gotten comfortable with helping myself to the kitchen.

Wednesday I got “the call” to come say good bye, so my dog went to the kennel, my kid went to the neighbor’s, and I went to my mother’s home. And sat with my family. And waited. Many things have happened. We said lots of goodbyes and thank yous. The staff stopped in many times to hug us and tell us it has been an honor to care for our mother, and to show us their scars where she bit or scratched the shit out of them. We told stories and sang dozens and dozens of songs. No one acted like a jerk. We drank over a fifth of liquor and a couple sixes of hard cider. We ate chips and other crap. And waited. We cuddled her, and held her hand, and told her she was beautiful. So did the staff. They got in bed with her and held her while we all gathered in her room, the temperature in there becoming stifling and suffocating as we all packed in there, afraid to walk away. We learned to dress in layers as we waited.

She struggled to remember how to swallow, so giving her drugs orally was a horrible thing to witness. Then her drugs were given rectally, and that was even more horrific. “I’d rather just die than have anything stuck in my butt,” her nurse told us. So we decided to stop everything except the morphine, including the anti-seizure medicine. Then we waited for her to have a seizure. It didn’t come. It may.

She perked up and inched away from the edge of death, and had moments where she made eye contact and attempted to smile. She was angry and frowned. She made nonsensical sounds and we wondered if she would say anything important. “Oh yeah,” she said this morning as I stroked her hair. She trembled. We sat and watched. We became exhausted. We stopped singing and telling stories.

I came home.

Monday, January 4, 2016

This is a weird spot to be in. This waiting. I do not really have words for this.

So I am going to share a story about something that happened last summer that I did not think was funny at the time. But I kind of do now.

I got to work one morning and found a text from my sister in law, telling me that everyone was headed to the ER because Mom had either had a heart attack or a stroke. Of course I left right away to go see her, but on the way I stopped at home and got my guitar because I figured if this helped, I’d just keep playing. Maybe even play her out of her journey.

It’s an hour and a half from my job to the hospital. Plenty of time to fret and worry and try to make child care plans and find someone to watch the dog in case I was going to be gone a long time. Plenty of time to talk on the phone with family and find out my mother only had a seizure, not a heart attack. So that was good. But I knew her brain would be extra scrambled for a while afterward, so I wasn’t sure what I would find when I got there.

The ER in my hometown is quite a production. You have to go through a metal detector and then a concierge meets you at the door and escorts you where you need to go. I guess this is in response to an incident a few years ago where someone walked in and stabbed someone in the ER, which I still maintain is an excellent place to be stabbed. If you need to be stabbed, the ER is where to have it done.

So my guitar goes through the metal detector, and so do I, and the concierge meets me and takes me just around the corner to a room across from the nurse’s station where my mother is. She’s in this wild state of extra scramble plus pleasant plus pissed as hell, and she’s trying to escape the bed she is laying in. But I pulled out my guitar and start playing, and this works. Ok. She settles down. All of my family members slowly start leaving for a short time because they all had something to deal with, and the music is buying us some time.

Eventually my mother starts to get bored and wants to escape again, so I keep playing and singing while trying to operate the hospital bed with my feet to trap her. She’s scooting, like a little girl, or a dog across the rug, digging her heels into the bed and pulling her butt towards the edge and towards freedom. I’m on one foot trying the balance and keep the song going and work the bed. Bang, I finally tap the right button and the foot of the bed goes up, her head goes down, and now she can’t get out. Which is good, but also is making her more pissed. I kept playing.

She needed more anti-seizure medicine in her system, but you couldn’t tell her that and have her understand, so a nurse came in with a tablet sprinkled into Jello. I’m in the ER playing and playing and the nurse is dancing and trying to get the Jello in the extra scrambled pissed off dementia patient, and this only partially works. So they closed the curtain at the foot of mom’s bed, and after a few seconds a male nurse flings the curtain back and stands there like TA-DA!! Mom LOVES this. She reaches for him, smiles with an open mouth, and the other nurse shovels the Jello in. He disappears. He reappears, and we do this about a half dozen times more. Because there’s always room for Jello. By the time we were done we were all laughing.

Until the smell started. You know that smell. You know where I am going with this.

She needed to be cleaned up, but this made her mad all over again and even the Male Nurse Revue Show wasn’t squelching the anger. I was at her head, singing, playing, on and on and on, and the nurses are trying to deal with the mess and of course eventually they got it. But in the melee, while she was wiggling around cursing, she somehow swung around and jammed her fingers in my mouth. It was like a cobra strike. Like where did that come from and how did we get here???

“I wonder where your hand has been, Mom,” I said, and caught the nurse’s face of grossed out concern, a solid “Yuck” burned into her forehead. I stopped playing and got a handful of anti bacterial soap and washed my mouth out in the sink of the ER, my guitar slung over my back like some kind of a bad ass with a mouth full of nasty.

And the nurses left. Mom and I were alone again, me playing and playing and the nurses at their station dancing a little as they worked. I had run out of material and was just making shit up, songs about nurses working long hours and ghastly ER injuries. My family started to work its way back in her room, and we got ready for her release so she could go back to her facility. Of course the paperwork takes longer than you ever want, especially with someone who has no idea why they are there and are only making extra scrambled escape plans.

Mom was happy for the ride in the wheelchair as they released her, and when we reached the entryway to the hospital parking structure she was ready to get the F out of there. But my Dad, who was sent to get the car, was not there as planned. So up she goes, or attempts to go, as my sister and the nurse try to keep her down in the wheelchair. Mom is having none of this so I pull my guitar out again, and start playing again to try to settle her down. People are walking into that ER entryway after having some sort of genuine trauma and are met with our wacky family filling that small glassed in space with some crazy acoustic dance party.

Mom got in Dad’s car and they headed back to the facility. My sister and I went for shots of tequila, me sipping it and holding it, deliberately swishing it over every surface in my violated mouth. We got a phone call at some point from my dad that he has decided to take Mom out to lunch on the way back, and of course this is a terrible idea for many reasons. So my sister and I leave the bar, find our parents at the restaurant, and walk into to what looks like a lunch explosion. Food everywhere, her trying to escape their booth, almost every kind of chaos you can imagine except for the doodie part because that happened just a short time previous. “Dad,” I ask, “why are you here? You have to take her back now.” Ok, ok. We got our parents out of there and got my mother back to the home where they welcome her and were worried about her. She was safe again.

And then I went home. Because I was tired. And I had more tequila when I got there. And I did not think this day was funny. But now I guess I kind of do.