Episode 7: Do-overs
Season 1: Surviving Alzheimer's
Week 38: I feel like we’re doing well 90% of the time and I can easily redirect or de-escalate 5 out of the remaining 10%. That last 5% can be pretty rough, testing the resiliency of my normally thick skin. The other day we were going around and around so much I felt like I was mentally herding cats. I was about to lose it, so I stepped out onto the front porch and texted D’s sister for an emergency facetime (one of our more successful strategies). That bought us just enough of a breather for me to compose and her to distract herself out of her frustrating Alzheimer’s maze. Ten minutes later we were in the car enjoying some favorite songs.
Week 40: When D started yelling crazy nonsense about how I don’t love her or help her or do anything for her, I remember being struck with what became my biggest fear: that she wouldn’t remember who I was. I’ve come to realize that her saying “you’re not my husband” doesn’t mean she doesn’t know who I am, it means she doesn’t know what husband means. I think at this point (point being so fluid, inevitably dissolving into nothingness), I remain her rock to hold fast to, and her guide that she can depend on to help her navigate through uncertainties, fear, and all the little things one should do to get through each day as safe and healthy as is reasonably possible. She’s losing her ability to care for herself. She’s not losing her husband.
Week 42: We tried a do-over mini vacation, once again using some timeshare credits for a long October weekend in Lincoln, NH. My brother and his wife joined us for the first 2 out of our 4 nights there. Lincoln’s proximity to I-93 and route 112 (the Kancamagus Highway or simply “the Kanc”) makes it the gateway to one of the most popular and congested fall foliage routes in New England, and hence the nation. We’re not there to see leaves. We’re there to immerse in all the nature networked to those leaves. It is a beautiful sunny day.
We found a trail off the tourist radar and walked a couple of miles through a meadow, snacking on the “breakfast cookies” I made for the trip. We made it up to a ledge with a view as the four of us absorbed the moment. Our sister-in-law always referred to D as “the sister I never had” and I know how much this time with her means. Her disease always lurking in the shadows. The inevitability of it too horrible to consider. But this is why we’re here — so we don’t have to think about it, and we can live for these moments on this day.
The next day we head out early to beat the rain forecast. I take us to the Crawford Path trailhead. I’ve hiked that trail before, to the summit of Mt Pierce and along the ridge and peaks to Mt Washington (a bucket-list worthy excursion). I wanted them, especially D, to experience some of its wonder. It is the oldest continually maintained mountain trail in the U.S. We did a mile up and back. Mission Accomplished; nothing like a walk in the woods, especially ancient untainted woods.
We improvised a brilliant light rain plan B and headed over to Littleton, NH where we enjoyed lunch at the local brewery on the banks of the Amonoosuc River. We did the obligatory walk over the covered bridge and along the river. We picked out winter hats from the sale bin at a store labeled “The nation’s oldest ski shop.”
This made me think of what a stark contrast this was to our Manhattan weekend. I’ll need to consider many factors as I plan future destinations for us. At this point, I’m planning to keep finding those destinations until the disease sours and eventually poisons our lemonade.
That night, as we were about to fall asleep, D said something about the warm sweater she wore that day, and I said her other new sweater should be warm too, and she said it would look nice with that new white blouse, and I said yes, maybe with one of your mom’s necklaces she left you, and she said I do have a lot of necklaces, and I said, yes Trudy, you do have quite a collection. I called her by her mother’s name because her mother loved to collect costume jewelry. Right when I thought she was falling asleep, she says, “She wants me to hear what God is trying to say to me.”
The next day, we did an almost 7 mile hike down the Lincoln Woods Trail. It was a beautiful crisp fall morning. This is what I recorded in her travel journal: “A flat wide trail with the old railroad ties rotting under a blanket of yellow and red leaves, then up a boggy trail to the end of Franconia Falls — a total forest immersion and the perfect level of adventure for us both.”
This would be one of our most romantic, enjoyable vacation getaways — a testimony to not being afraid to try a do-over.
Week 48: We have been doing amazingly well and are both in full Christmas spirit mode. One of D’s specialties has been making and decorating gingerbread cookies. We hosted a cookie making party, which was a huge success. We bought a bunch of cookie tins and D enjoyed delivering them to friends and her doctors and nurses. It was like that summer night with the stars and the fireflies — wishing we could have 10,000 more days like these.
Week 52: D is flying to Austin, Texas with her sisters to visit their brother’s family. I’m staying home with their dad (who is 93 years old and living with us). They are even getting a free upgrade at the timeshare resort to the Presidential Suite. They are going to get treated to all the local flavors, catch up with nieces and nephews and each other. As long as they pace themselves, D, and hence everyone else, should have a lot of fun. And follow the new Golden Rule: just don’t lose D.
