Traveling with dementia is not so very different from traveling with the kids

Having a partner with dementia and getting ready for a trip, to anywhere, for any amount of time, reminds me so much of when our kids were little. It’s uncanny.  When a child joins a family from foster care after an early life of neglect, any changes in routine make a huge difference. The world turns upside down:

“When is bedtime here?”

“Why is the sun up too late?”

“Why does the milk taste different?”

“When are we leaving?”

“When will we be home?”

“Why do I need that?”

We prepped the kids for even the smallest of trips- a day at Olvera Street, a weekend in San Diego, a run up the coast to see a mission and go to Solvang. All required seeing pictures of the hotel, snacks that were familiar, meds planned ahead, activities for the room, restaurants nearby that suited simple tastes and familiar foods and drinks available in the room. Prepping for a trip across the country or on a cruise was an entirely different process. Three times longer, more in depth and lots more work. On Kerry’s first cruise the ship did not offer milk in the dining room. It required a trip to the bar on the lower level. Our little Barbara Walters got to know our waitress in five minutes, interviewed her, learned all about Romania from her, and took her by the hand three times a day to go get three glasses of milk for her meals. So much for different restaurants on that trip- we were in the main dining room three times a day for the new routine of getting milk.

Tonight I’m getting us ready for a trip for five days to Sacramento. Mybusiness partner and best friend and I are doing a presentation for a statewide conference. I should be worried about that aspect of this trip. She’s had her hands full at home with other issues. I am far more worried on this end about the fact that Casper is coming along for the trip. Our oldest child is stressed that we are going to be gone, and Casper can’t remember why we are going or where or for how long. Tonight she thought we were driving there. Meds are packed for the eldest so she can spend the week with a great and supportive friend. Meds are packed for us so we can make this possible. The same questions arise:

“When are we going?”

“Why?”

“How come for five days?”

“How will I find you?”

“When can we come home?”

“Why do I need so many clothes?”

“Why are we going?”

“Where?”

As with the kids when they were little, I brought home new clothes to make this an experience. Sherry found a new restaurant for all of us to try. I got the luggage out. “Why are we packing so early?” (We leave in a little over 12 hours). Casper started to put meds in a planner. “No, we have to take the bottles and boxes. You need five days.” “But why? How long are we going to be gone?”

Stress makes Parkinson’s symptoms worse. The tremors are worse tonight, and the REM sleep is lots more disturbed. Casper is fighting and jumping and taking like crazy. Sleep will not be happening anytime soon for me. As I move stuff to get ready for bed she awakens for about the nine-hundredth time. “Why is luggage out? Are you going somewhere? Whose luggage is that?” (It’s ours. We bought it together last year for our last trip to Hawaii. My heart hurts).

There is a suitcase with clothes- soft, easy to wear, easy to match, easy to spot in a crowd clothing. There is another filled with survival gear PD style: three kinds of cookies, water, Diet 7-Up, crackers with peanut butter, M&M’s (both kinds), Reese’s. I called the hotel yesterday, and we will have a fridge in our room when we arrive. Five minutes later it will have stuff in it that will make it seem familiar to Casper. There will be a tablet out with my schedule, notes about how to reach me, a reminder to use area codes, and the TV remote will be ready.

I suddenly feel a kinship with Sandra Day O’Conner, who had to retire because of her husband’s dementia. He went to work with her at the Supreme Court for years with a helper, but finally could not tolerate waiting for her all day. I used to be jealous that she had that luxury- to be able to have him at work. So few caregivers can do that anywhere. Now I feel for her, and what it must have been like trying to hear cases or write opinions wondering if he was okay or upset that she was not available right now. I wonder if he used to watch the clock obsessing about the fact that she said she would be done in an hour or by 3pm, or by whenever, and then wasn’t. Did he knock on the door over and over? Or call and call worrying that she was hurt or not coming? I wonder how we are going to manage this first trip not to a beach where I am visible and nearby at all times. I make plans to sit near exits during sessions, to make sure I can get cell reception, to make sure the hotel staff is alert to her wandering. I have med lists, powers of attorney, and our Civil Union license ready to go.

I hope it is enough, and that our biggest issue will be finding ice cream nearby every night before bed. Milk- not so much. Ice cream? That will be an emergency.