Travels with Mom: a trip to the Neurologist

So, yesterday I took Mom to the neurologist.

She’s been having more of these spells where one minute she’s fine, and the next she’s crumpling up like a boneless doll. They’re not pretty. The nurse practitioner at the nursing home where she lives thought it might be the Parkinson’s disease progressing, so we moved her April neurology appointment to yesterday.

When I showed up – after a stop at our current favorite Thai restaurant for the fresh rolls and sushi she’d requested – she was waiting for me with her coat on, but instead of using her walker, she was sitting in a wheelchair.

“Where’s your walker?” I said.

She looked at me the way she does when she doesn’t want to say the wrong thing. It’s not a fun thing to see. The mother I used to have would have said what was on her mind without hesitation.

“We always use the wheelchair when we take her off the unit now,” Jennifer said. She’s one of the nurses at the Home. She’s tiny, efficient and delightful. “We always use it for any distances, if she’s going to Temple or an activity off the floor.”

For the past month or so, we’ve mostly been hanging out in Mom’s room, so this was news, although it made sense. I was just trying to figure out where to leave the wheelchair when we got to the car, the logistics of getting one at the hospital where her appointment was, and then doing the whole thing on the trip back.

When Jennifer explained that it was a travel wheelchair that would fold and I could take it along, I felt better. So, off we set. I had to get her to a standing position when we got outside and help her fall, more or less, into the front seat. She has a disc that rotates – kind of like a lazy Susan for your butt – on the seat, so I was able to lift her legs and swing them into the car once she sat down. But she ends up sprawled into the passenger space, legs on the floor, her back not touching the backrest and her head kind of aimed at the ceiling. It looks as uncomfortable as Mom has assured me it feels. So then there’s the part where I direct her, (“Put your weight on your feet and push yourself back in the seat. You can do it, Mom. You can! …Good….good….you’ve got it…you’ve got it….yes!”)

Then I buckle her seat belt and get the walker (or in this case, wheelchair) into the car, and off we go. It used to be that I’d pick her up early and we’d go out for lunch. Picking up “to go” and eating at the hospital seemed like a smarter idea this time. But I was reconsidering even that. She seemed half asleep. Then she said something.

“What?” I asked.

“You know Lou,” she said. Lou is one of the women at the nursing home. Her granddaughter and Alex were playmates when they were small.

“What about her?” I said.

“Her parents were coming to pick her up and take her out today.”

Lou is 94. This was not good.

“Her kids, you mean,” I said.

“No,” Mom said. “Her parents.”

This went on for a couple of rounds. Mom is not usually this kind of dotty, so it took awhile to sink in that my mother didn’t think there was anything out of the ordinary about a 94-year-old woman’s parents driving to the nursing home to pick up their daughter who has dementia in order to drive her back to their house for a visit.

I did a bit more checking, and sure enough, Mom was totally cool with the whole 112-year-old parents thing. (That’s assuming they were 18 when Lou was born, of course, which they probably were not. They were probably older, probably closer to 118.) So I dropped the subject and thanked whatever deity there is out there that we were on our way to see the neurologist.

We got on the highway. I kept my eyes on the road, except when I was checking on Mom. Who did not look like she should be going anywhere, unless it was bed.

“Help me.”

The words came out in barely a whisper.

“What?”

“Help me.”

“What do you need me to do?”

“I don’t know.”

I didn’t know either. I was just glad we were on our way to a doctor. It took us about 15 minutes to go 10 miles. It took another 20 to go 1,000 feet from the hospital driveway turn-in to the drop-off point where we could ditch the car and enter the building.

Mom spent that time probably regretting having been such a good role model for road rage. Worry and hunger do not bring out my best self.  We had left a comfortable time cushion for getting to the appointment. But it was supposed to have been for lunch-eating purposes, not being cast in “Hospital Apron Traffic Jam, the Reality Show from Hell.”

Cut to: the exam room. I tried to get Mom to eat. She wouldn’t. I tried to get her to drink. She wouldn’t. I was hungry. I ate. I was thirsty. I drank. Dr. B came in. She asked Mom about her trip to Canada in June. I showed her photos and a video of Mom walking down the aisle at Alex & Tevie’s wedding.

She asked about what was going on. We told her. She read the contents of the envelope the nursing home had sent. She tested Mom’s strength. It was good. Then she took Mom’s blood pressure. It was low. She said that it was a simple fix, and would account for the weakness and the weirdness.

“If there’s no blood going to your brain,” she said, “You’re gonna be dopey.”

Dr. B said she would call the nurse practitioner at the Home and have a conversation about the blood pressure issues. She also told Mom that she needs to eat and drink, and asked us to come back in three months.

Mom looked a lot more alive than she had when we’d come in.

“That was good news,” she said. I agreed. I handed her the fresh roll she wouldn’t eat before.

I wheeled her to a place near the door but not outside, and went to get the car. When the valet parking guy said it would take about ½ hour to get the car, I told him I was going to take Mom for a coffee while we waited.

We chatted on our way down to the café, and when we got into the dining room, a work colleague was sitting at a table by herself. Melanie teaches nursing at the tech school where I work. She was visiting a friend at the hospital. We sat together. I introduced her to Mom, and we talked about the appointment, what had happened, about nursing homes, about getting older and exchanged a little work gossip. Mom was more animated than I’d seen her in ages. She even ate all of her sushi, which hardly ever happens.

On the way back, I told her how upsetting it was to have someone ask for help and be in such visible distress and not know what to do to make it better. I asked her what she was experiencing in those moments, and what I could do.

“I don’t know,” she said.

We’ve talked previously about quality of life issues, and I asked her if she was getting to a point where that was starting to matter. She told me that mostly, it isn’t. We agreed that the best thing in the world would be to die peacefully in your sleep, either during a nap or during the night. We talked about what would happen if that didn’t happen, who would be with her, and how we would do things.

Then, we made plans to go see an exhibit at the Jewish Museum this weekend. When we got back to the her room, I showed her – with no small amount of trepidation – the post I wrote last week about my dad and breasts.

I watched her read it. It felt like it took as long as the hospital apron traffic jam had (it didn’t).

She liked it.