This week was an adventure. Like all adventures, it offered highs and lows, memories I want to savor and some I’d rather forget.
Thanksgiving in New Orleans, with my daughter who lives here and with my son who met us there, was our first trip together, and Ralph’s first time away from the farm, in probably two years.
The last trip was to New York City for a wedding. He had no interest in making that experience into an actual vacation. He attended the official events, but otherwise I could not interest him in leaving the hotel even for a short walk around the neighborhood. All he wanted to do was nap. At the time I didn’t understand how much he needed those naps so I spent the two and half days in a general state of mild annoyance.
So, while I was thrilled at spending four days with my kids in a way we seldom do, and in a way we may not get to again, I approached this week with trepidation. As did Ralph. For the last month, each time he tried to remember the plan, I tried not worry if this much travel demanded more than he was capable of handling. Four days away from his familiar routine is a lot to ask.
On our trip to NY, the greatest stress for Ralph had been the actual travel—not only the time in the air but the airport with its crowds, its lines to maneuver and all the possibilities it offered Ralph to get confused or, worse, lost—our drive to Nola was actually pretty easy. For the six hours plus, I drove while he smoked and asked me questions over and over. We listened to the radio. It was actually kind of relaxing for both of us.
And he loved our small funky hotel in a converted mansion with its side garden where he could smoke….you might notice that smoking and Ralph’s ability to smoke has become a theme not only on this trip but in our life together.
These days I accept Ralph’s need for sleep and on this trip I made sure there was plenty of naptime. If anything, I let him sleep more than I do at home.
He needed to be as rested as possible because he was expected to take part in all activities with the kids. We ate great meals, we went for beignets, we walked along the river and down Magazine Street. We waited in line at Preservation Jazz Hall, where Ralph loved the music even though he had to stand the whole time. He loved laughing over jambalaya and drinks afterwards even more, loved walking through Jackson Square singing “The Battle of New Orleans” with my son-in-law as they vied to see who knew more of the words (a tie).
We spent Thanksgiving Day preparing a big meal at my daughter’s apartment listening to music, teasing, laughing, having the usual family spats and just hanging out together. Telling family stories Ralph was in his element, more the Ralph of years past than he has been in ages.
The description above is how I want to remember the week. But a shadow of tension followed me everywhere. “What’s the agenda?” he would ask and then ask again—questions I am used to answering over and over but my kids are not. At meals, I would suddenly realize that Ralph either wasn’t paying attention or had given up trying to follow the conversation the rest of us were having. Every time he needed to use the restroom in a restaurant I went on alert to make sure he could find his way there and back. He couldn’t follow the TV shows we sat around watching. Every few minutes he wondered aloud, “I wonder what the dogs are doing.” He went outside to smoke and went outside to smoke and went outside to smoke.
The good times, and they were good times, were a lot of emotional work for both us. I realized how much I have not only arranged my life around Ralph’s but how Ralph’s cognitive issues have played into my own tendencies toward over-planning and over-worrying, not only about him but about most areas of my life. What is most worrying is that I see how my own boundaries have narrowed, that I have to work doubly hard to keep myself engaged with the world beyond the parameters of Ralph’s MCI/Alzheimer’s.
Ten minutes ago Ralph climbed into the backseat of my car, headed back to the farm with my daughter and her husband who will fly off tomorrow on a vacation abroad (another anxiety producer given recent world events). I have stayed here in New Orleans to babysit my granddaughter for a week.
I know Ralph will be fine. He has been alone before, my son is going to stay on the farm with him a good part of the time, and various friends will be checking in regularly. His drugs are all marked, his calendar is filled in, there’s a week’s worth of meals ready, and I’m a phone call away.
But I am also a nervous wreck. Of course, maybe that has less to do with Ralph and more to do with taking charge of an 11-year-old girl who is a lot less easy to boss around than Ralph.
5 thoughts on “Travels With Ralph”
Somehow, I missed this post …. maybe I wasn’t checking all of my email. Anyway, as I read it now, I had that feeling of trepidation in my stomach. How well I know what you were going through. I think (if we’re lucky) we worry more about things than every actually happens, but it’s that heavy weight that never goes away. It’s like a dark shadow sitting across the room.
Interesting to read this right now. Friends have invited to dinner tonight. By 8 this morning Ralph was showing anxiety about going, asking every few minutes where exactly we were having dinner and if we’ve had dinner there before (numerous times), so of course I am anxious too, even though these are friends who are aware of his condition and extremely accommodating.But I know once we get there, Ralph will be fine…
Glad you had a good time, Alice. Not only will you have some happy memories to call on in the future, but so will your kids. That’s so important. The first time I saw one of my boys after I shared my diagnosis, he told me how important it was to him to create some good memories with me before that becomes too difficult. I bet in no time at all your kids won’t remember Ralph asking the same questions repeatedly, but they will remember the week you had together.
I may be a year or more behind Ralph on the MCI/AD spectrum, but boy did some of your comments strike a raw nerve. Whether because I’m just not noticing it (and my kind wife sees no reason to point it out to me) or because my memory is stable, my forgetfulness isn’t all that obvious to me. I don’t think I’m asking the same questions twice, telling her the same stories.
What is obvious to me is constant fatigue, and maybe the “mind fog” I read others describe. For most of the past 40 years, I’ve slept from 6 to 7 hours most nights. Maybe I felt tired when I first woke up, but a cup of coffee and I was off to the races.
Not any more.
Now I rarely sleep less than 7 hours, and sometimes 9, and still I’m tired all the time. And it’s a particular kind of tired. When I used to work outside all day on a cold day, I’d come in at the end of the day and feel “tired.” That’s not the kind of “tired” this is. When I worked intensely all day in the office, rushing to get some intellectually challenging and complicated project done by a deadline, I’d also feel “tired.” That is the kind of “tired” I’m talking about. It’s a kind of tired that is focused somewhere in my head. That’s the kind of tired I seem to feel now on days when I’m in the office or working in the yard or just sitting around the house, regardless how much sleep I got. It never seems to go away.
Unlike Ralph, I haven’t napped yet. I see that as some kind of line that I don’t want to cross because I’m afraid that, once I cross it, I’ll surrender and nap every single damn day. But the Siren’s call to nap gets stronger every day and harder to resist.
Oh, I hope you have lots of fun with your granddaughter. What a great break it will be for you as long as you don’t spend it worrying about Ralph. It’s not easy to switch off the worry button, is it?
It sounds like you had a pretty good time with your family and have some good memories to look back on. Enjoy this week.
Will let you know how this week goes. Fingers crossed. So far Ralph is fine. Almost sounds as if he is enjoying a little independence…