When my daughter in New Orleans, who loves sun and surf, brought up the possibility of a family week at the beach, I wasn’t surprised, but then my son in New York, who hasn’t let the sun shine on him directly since he was 18, jumped on board. I was thrilled. We were going on one of those three-generation beach vacations I’ve always heard about never thought I’d actually get Ralph to do. But he did.
Ralph agreed the plans seemed doable: not too long a drive; an area of north Florida he knows well; a house big enough for all of us to have privacy; most important, a covered porch with a beach view.
Of course, as the date approached, he grew less and enthusiastic.
Ralph: I can’t leave the dogs.
Alice: They’ll be fine. Pedro will feed them and walk them every day.
Ralph: I hate the beach.
Alice:You don’t have to go to the beach. You can sit on the porch.
Ralph: I won’t have anything to do.
Alice: You can do exactly what you do here, and you will even have someone to drink beer with (unfortunately)
Ralph: How long are we going again?
Alice: Four or five days(actually seven but who’s counting)
After multiple (in the hundreds at least) variations of this conversation, I started getting nervous. For one thing, I remembered our last car trip months with its multiple stops for Ralph’s nervous stomach, with cigarette fumes blowing in through the open passenger window despite my requests that he not smoke, with his constant complaining how much longer. For another, I was secretly worried about the dogs, or rather about whether Ralph could survive a week away from them.
In fact, the drive was blissfully uneventful; I’d loaded the car the night before to give Ralph maximum pre-drive sleep time in the morning; he needed only three stops in five hours, and he was willing, most of the time, to vape instead of smoke. Since we were the first to arrive, Ralph helped haul the supplies inside before settling on the porch with a real cigarette while I unpacked and organized supplies. Then I had about twenty minutes to sit down myself before the others showed up and the week began in earnest. Those were the last peaceful twenty minutes I had for the week.
For the next seven days there were seven of us eating together, beaching together, laughing and/or arguing together, playing with BabyRalph together. There was also lots of me cleaning up and cooking and organizing the troops, and also biting my tongue and going along for the ride. Let’s face it; family vacations are like childbirth and marriage—universally the same while observed from outside, but intensely individual while going through the experience.
The group high of the week: a hilarious game night of charades and identity games, in which even Ralph got more or less involved
The group low: not the semi-frequent rain but an expensive, mediocre restaurant dinner that took forever and left everyone grouchy with everyone else.
My private low: The stress of maintaining a balance between involving Ralph in the life of the family and letting Ralph relax his way, ie by sitting alone smoking endlessly on the porch and drinking as many beers as possible. Not once did he venture to the beach, not even to see his grandson’s first experience of the seashore. And controlling his intake of beer was more difficult under vacation conditions although I found it bittersweet, the way the adult kids (including son-in-law) took turns sitting with him evenings on the porch, reminiscing and philosophizing beer after beer.
My private highof the week and going forward forever: BOP. For a while now BabyRalph has been calling his mother Mama, his father Papa, his 14-year-old sister Dada (no clue why but he refuses to call her anything else), and me Nan (sounds more youthful than Gramma or Nanna, don’t you think?). By the first day at the beach his uncle had become Jaak. And then Ralph became BOP.
Where BabyRalph came up with BOP is anyone’s guess, but it is genius. BabyRalph would run around the house calling BOP BOP BOP. And BOP would be dragged from the bed where he was napping or the porch where he was smoking to sit for a few minutes in the big blue armchair by the window so BabyRalph could climb into his lap and chatter away for a few minutes before one or the other drifted away.
On the last day I was the one ready, despite the allure of beach and waves and family, to leave behind the cleaning and cooking and organizing (and family), while Ralph/BOP was in no hurry to leave at all. As for the dogs, he asked about them exactly once.
So, whether he knows it or not, more trips are in the works.
Alice in Memoryland 
I started a comment a week ago, Alice, but never quite got it done.
I think my wife similarly has a little internal debate about whether and how much to involve me in family and other events. Getting together with others is enjoyable for us both, and of course regular social interaction is one of those “recommended” behaviors that studies have shown might slow progression by a few months in some fraction of AD patients.
On the other side of the ledger, there’s a price to pay for trying to do too much: fatigue, maybe a little anxiety that shows itself in some irritability or unintended harsh words, and a feeling at the end of the day that that it was too much and I don’t want to do that again for a while. So for us the goal is to find that sweet spot where the porridge is not too hot and not too cold, but just right. It sounds like you just did that on your beach trip.
As for your comments about the Ritalin study, I hear you there. I’ve lost track, but I think I’ve applied for admission into about a half dozen studies, maybe more. I’ve been rejected by every one of them for one reason or another. I felt disappointed at first, but then several of the studies that rejected me either were terminated early or concluded with no benefit. Sadly, there are no studies (at least that I know about) that look very promising right now and, at least for me, my only interest in participating in studies is the more amorphous desire to contribute a few data points that might help come up with a cure for people who will follow me. I don’t think it’s a realistic expectation that any study is going to help me.
I hope my wife avoids feeling even a moment of guilt if someday she decides not to enroll me in a study because she doesn’t want to take on the work. At least how it looks today, the chance that I will benefit in a meaningful way from any of these studies is really remote – like I have a better chance of winning Powerball! I don’t see whether you or her are willing to take on the chore of participating in a study as even on the “caregiver test”, Alice. Whether you do the Ritalin study with Ralph seems to me to speak more to how much time and effort you’re willing to donate to science and the greater good because, unfortunately, it is so unlikely to help Ralph. Apologies if this sounds harsh and instead reflects my pessimism.
The first half of your comment is where you show that you earned an A on your most caregiver test. One of your other posts was about Ralph “resigned,” and in a way I am, too. My approach to myself is sort of long-term hospice care even though I’m likely years away from the end. I’m aware of and avoiding lifestyle behaviors with a demonstrated risk of increasing progression, but otherwise my goal is to make myself and my wife as comfortable as we can with whatever time I have left (probably a good approach to life without AD!). If sitting on the sidelines at parties makes it easier for me to show up in the first place, that’s where I’ll sit. If Ritalin & beer & cigarettes helps Ralph get through your family gatherings – as medical marijuana helps me manage anxiety and get through ours – do it. The goal here is to remain together under the same roof for as long as we can, maintaining as good a quality of life for both of us as possible along the way. There rest of it is just a distraction.
Heading Somewhere
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As usual, you offer so much to think about. And you NEVER sound harsh so don’t ever worry about that….I agree most studies are no going to pay off in the immediate present. I actually sign up Ralph because he lacks much structure or directions theses days, and the act of being in a study involves him in a project. I am struck most, I admit, by your comment on your long term approach. I don’t know if Ralph doesn’t think long term at this point or if he chooses not to talk about. He is definitely resistant to the possibility of downsizing. And I don’t push the discussion.
As for the issue of travel and gatherings, it is so helpful to hear your reaction. Finding the balance is everything.
But I also want to say to you that you should not worry too much about us caregiver wives. Just as you are finding your way, so are we, and as much as I grouse, we wives will be fine.
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