When An Alzheimer’s Study Tanks


We got the news last week that the Ralph’s Merck study is shutting down. I got a text from the nurse at Emory to say Ralph should stop taking his blue pill but to come in for the appointment already scheduled for this week—and to bring all unused pills with us.

I was a bit startled. Not sure how I should feel but surprisingly upset. Ralph has been holding steady for so long, and I assumed the little blue pill was at least a large part of the reason. But he has not enjoyed the study. His visits, at least two hours being prodded and tested plus an hour each way to and from, always leave him feeling tuckered out and slightly woozy.

I liked Ralph being in the study. Self-centeredly, I enjoyed have a chance to talk (i.e. whine about Ralph) to the social worker whom I like as a person. Despite Ralph’s complaints, having an excuse to take him for an outing always seems like a positive thing, and gets harder and harder. And I liked that he was being checked regularly, that someone would catch any problem sooner than later.

So many studies are going on with Alzheimer’s, and there is always a new breakthrough on the horizon that seems to fizzle. The reality is that I didn’t expect this study to make a difference for Ralph but I was thinking about any children/grandchildren who may have inherited the gene. I figure whatever happens with Ralph is going to happen at this point and we’ll deal with it.

The nurse and I agreed that Ralph is probably not likely to participate in other studies. For one thing, his inability to have an MRI locks him out of most.

What saddens me, I guess, is the sense that another door is closing.


Alzheimer’s By Phone and Life List




Me: Hey, just checking in

Ralph: Hey, how is everyone.

Me: Fine. We’re all fine. R is working. J is away, remember. That’s why I’m here.

Ralph: Oh that’s right. I forgot.

Me: So what are you doing?

Ralph: Not much

Me: Did you take your pills?

Ralph: Yep I checked them off the life list. Today is Thursday right.

Me: It’s Friday.

Ralph: Oh Right. Well I’ll take them right now.

Pause while he goes to pillbox.

Ralph: I took them and checked them off.

Me: Great. Did you eat dinner (or lunch or breakfast)?

Ralph: Yep

Me: What did you eat.

Ralph: Whatever was on my Life List. How is everyone?

Me: Fine. BabyRalph is asleep

Ralph: How old is BabyRalph now?

Me: One. Remember we came to the birthday last week.

Ralph: Right, right. I forgot. How is everyone?


This is more or less the conversation I have three times a day when I am away from home and I have been away a lot lately, on the road between Ralph and BabyRalph, mixing up husband and grandbaby care. I also have a me-time weekend with college friends and a two-day family reunion coming up in the next six weeks. So that’s a lot of travelling and a lot of leaving Ralph at home.


I have mixed feelings of course. Travelling to be a NanaNanny is tiring but wonderful. At the reunion I get to take my son as my plus one since Ralph doesn’t travel. My friends and I have already planned every minute of our us-time weekend with restaurants and shopping and even some culture thrown in. l want to go on these trips and I feel guilty about going—but mostly guilty for not feeling more guilty.


Because the truth is that Ralph seems to thrive when I’m gone. He loves what he calls his Life List of activities and events to check off once accomplished. He takes his pills, he eats his meals that I have left, he sees the people who’ve arranged to visit. And he can see he has done so. The Life List works much better when I am not home. Ralph loves to check off his accomplishments. He has a sense of being in control of his life. But when I’m home that same checking off has the oppressive and demeaning effect of too much overseeing. He prefers the more passive activity of glancing twenty times a day at the calendar when I am home.


Of course, when I say thriving, “seems” is the operative word. Because when I’m gone, my impression of Ralph is based on phone calls. In the numerous phone calls each day he “seems” really pretty happy. And pretty cognitively together. He makes funny jokes and is more engaged in conversation than he ever is when we are sitting in the same room. If I ask a question he has a ready answer. He asks me questions about what I am doing that he never asks when we are together. We actually have fun, especially when I put him on speakerphone with BabyRalph (no face time with Ralph’s flip phone) and he can hear baby babbling and I explain what BabyRalph is doing. He is engaged.


Or maybe I am kidding myself to feel better about travelling. After all, I know that when he talks to other people, they find him equally engaging although as soon as he hangs up, he has no memory of what they talked about or often even than they talked. Yet, in the moment he seems engaged. Or maybe he is engaged.


In any case, I do know Ralph doesn’t mind getting to sit on the porch with the dogs listening to the news and smoking—or sitting with them in the car as he’s been doing during cold weather—without my nagging him to come inside. I suspect he prefers the simple premade dinners to my salad and chicken dinners and that he sneaks in extra nutty buddies for dessert.


And when I get home tomorrow he’ll say he’s glad to have me back before returning to his nap or the porch as if I’d never been away.

Alzheimer’s Drip by Drip by Drip


faucet jpg


Ralph survived BabyRalph’s birthday party, but I wouldn’t say he had a great time. The 6-hour drive down included a lot of pit stops, several barely in time. Ralph took a nap as soon as we arrived Friday afternoon. On Saturday morning I left him and my son at the AirBnB while I went over to my daughter’s to help prepare for the party. When I picked up my son later in the morning, Ralph was not interested in getting up yet. He ended up “resting” until almost one—the party was at two. The party ended at four and Ralph took another nap, until I made him wake up to eat something at nine. We drove home the next day after brunch—at which Ralph complained about the confusing menu although he ate every bit of his meal. I was exhausted, not from the drive or the baby, but from the anxiety.

Actually exhausted may be the wrong word. Living with and caring for Ralph at this stage on the Alzheimer’s spectrum—when his loss of memory and coping skills are not always obvious to others but demand careful management from me—can be physically and emotionally tiring. As I’ve said before, thinking for two is draining. But it is not the whoosh of exhaustion that bothers me as much as the slow drip drip drip:

The repetition of course, the constant re-explaining. But also the small limitations that seem to be shrinking my world an inch at a time. His growing resistance, that may or may not connect to inability, to sit through a movie or a restaurant meal with friends, or a TV program with me, or a conversation. His growing resistance, that may or may not connect to inability, to doing small chores from changing a light bulb to putting his dishes in the dishwasher. And most of all his growing resistance to leaving the farm. In each case, even as I fight to keep active in the larger world, I find myself lowering my own expectations.

It may not be fair, but I resent the limitations he’s putting on my life. I’m a healthy woman in my late 60s and I want to enjoy these years, but I feel saddled a little more heavily all the time. I can’t help wondering, given the history of a marriage in which he often didn’t pull his weight, whether Ralph wouldn’t be behaving in some of these ways even without Alzheimer’s.

At the same time, I know how lucky I am. Lucky that Ralph’s condition is drip drip drip, not the plunge downward others have experienced. Lucky that we are financially stable. Lucky that that I have the luxury of being resentful over such small problems….

P.S. Here is a link to an article from the NY Times on preparing advance directives in case of future dementia. The information is probably too late if you have already been diagnosed, but worth considering for the rest of us….. https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region&region=bottom-well&WT.nav=bottom-well

Living in the Moment



BabyRalph’s first birthday is coming up at the end of the month. Ralph so enjoyed having the family together at Christmas that the day everyone left he actually agreed to drive with me  to New Orleans for the birthday celebration. Of course, I have avoided bringing up the coming trip too often to avoid unnecessary anxiety.

But yesterday I asked Ralph to help me put together one of BabyRalph’s birthday presents, a scooter. (I am not going to bore you with my own grandmother obsessing about finding the perfect present except to send a shout out to GG if you’re reading.) Of course, Ralph resisted at first, but as you can see he didn’t resist long. In fact he got totally into the project, which turned out to be the perfect level of difficulty: just easy enough for Ralph to manage and just challenging enough for him to feel good about managing. In other words, I actually could have put the scooter together myself, but not with Ralph’s innate ability using tools). It took less than an hour to complete the scooter and Ralph was really pleased. We both were.

So this morning, drinking coffee I brought up the scooter again. I told him the scooter would be his special GrandpaRalph present to BabyRalph, an idea he loved.

“So we’ll give it to him at Christmas, right?”

I looked at him and bit my tongue, the urge toward annoyed correction still strong.

“No his birthday,” I said as calmly as I could. “We just had Christmas.”

“Oh.” He looked flustered. “What month is this?”


“Remember we had a big Christmas, everyone here.”

“Oh right, I forgot.” He nodded and sipped his coffee thinking. “Who came this year?”

I wonder how all those people who told me Ralph seemed cognitively better this Christmas would react to knowing he’d forgotten about their visit (and in some cases who they were to him) already.

In a nutshell this is Ralph, happy in the moment as long it lasts, his past and future fraying away daily.

Physical and Cognitive Health Collide:  Dentistry the New Tractor in Ralph’s Life



shutterstock_Untitled design.jpg


Last Wednesday, the day after I congratulated Ralph and me on our comfortable status quo, I received a reminder from the gods—Never get too comfortable!

First thing that morning, Ralph fell down the stairs. He made it to the bottom step before he tripped so it was not a long or serious fall. But it was the second time he had fallen on that same bottom step in less than a month. Just before Christmas he had tripped and fallen, hard enough to dent the wall with his head. On both occasions he did not appear to hurt himself, although he has been complaining of some back soreness this time. But twice in a month! The possibility that he is no longer sure-footed, that he is fragile and at risk has freaked us both out.

Then that same afternoon, I took Ralph for his regular dental cleaning and check up. The dentist solemnly announced that she had found gum disease. Also a tooth that needed pulling. And another tooth that needed a crown. These are not big health issues in the large scheme of things, but to Ralph they became major crises. All the way home and throughout the evening he kept repeating, “This is a very bad day.” And I couldn’t help thinking he looked like the little boy in Judith Viorst’s classic Alexander and the Terrible, Horrible, No Good, Very Bad Day.

By Thursday when we returned to the dentist for the tooth-pulling, Ralph was a wreck. He didn’t understand why he needed to have a tooth pulled if it didn’t hurt, and he was convinced that having a tooth pulled was a major medical event. He also understood that he would have to see a different dentist, a periodontist, for the gum disease, and he swam into a state of anxious confusion over where he had to be treated (as if it matters, since I drive him there anyway)— the fact that we might have to drive to another town got lodged in his memory although he couldn’t remember why we were going there. But then he charmed everyone the way only he can, singing Dylan lyrics as they were about to inject him with Novocain.

It was afterwards that the real crisis sunk in. The dentist casually mentioned that Ralph couldn’t drink through a straw or smoke for 72 hours without risking a painful “Dry Socket.” I had her write on a sheet of paper in large letters THE DOCTOR SAYS NO SMOKING UNTIL SUNDAY AFTERNOON. Fat good it did.

As someone who has never smoked I realize that 72 hours would be a long time for any smoker to go cold turkey, but cognitive impairment compounded the problem for Ralph and made the next three days a Groundhog Day-like comedy. We enacted the same scene over and over. Picture Ralph walking in from the bedroom (where he’s been half napping most of the day) wearing a heavy jacket and a hat with ear flaps.

“Where are you going Ralph?” I say putting down my book and looking up from the living room chair I’ve chosen because it gives me a good view of both in the porch where Ralph usually goes to smoke and his car parked just outside.

“To have a cigarette.”

“You can’t smoke, remember.”

“Why not?”

You had a tooth pulled.”

“I did? Well it doesn’t hurt so it must be fine.”

“No, it needs more time to heal or you will have terrible pain.”

“How do you know?”

“The Dentist told us.”

“She did? Why did I have a tooth pulled?”

“It was creating a problem for your other teeth.”

“So I’m fine now.”

“Just one more day.”

“Then I’m done?”

“Well, no, you have gum disease. We have to go to the periodontist.”

“What will they do?”

“I don’t know.”

With a defeated shrug Ralph heads back to take another nap. Ten minutes later I catch him about to light an e-cigarette he’s found in some pocket or drawer.


For months Ralph’s memory has been holding steady. But now he was confronting a specific demand to remember. What concerned me was not just his inability to remember that he couldn’t smoke. Or why he couldn’t smoke. Or that he’d had a tooth pulled in the first place. (“What did I have done to my ear,” he asked more than once.). But a more general cognitive melt down. He became foggy about everything. Hang dog depressed and beaten down.

I hid all the cigarette and e-cigs I could find. I also hid his car keys—if he could drive he would head up the driveway to his “office” in the barn to smoke. (Given his lethargy and the cold weather he wouldn’t walk even for a cigarette.) Sure enough while I was on the phone, he headed out to his car. And a moment later came back wild eyed.

“I’ve lost my keys.” His tone was frantic. I realized that hiding his keys might have been a mistake, one more sense of failure for him to face. So I pretended to find them. But an hour later I came out of the bathroom and had to rush outside out to stop him from taking off in the car.

“Where are you going?”

“I’m out of cigarettes.”

“You can’t smoke.” …And so the scene repeated and repeated every few hours.

We made it to Sunday at 4 pm. when restrictions lifted. I was/am exhausted. He was/is still groggy. Tired. A little more confused than he seemed a week ago.

Physical and mental health are so wound up in each other, I don’t know if there’s been a real slide or if this is a temporary glitch. By the time I figure it out, we’ll probably have moved on to the next stage anyway.

Here to Report: NothingHas Changed


I have not written here for a month, the longest stretch of silence since I began this blog. Then today I was hit with Alzheimer’s—commentary, advice, anecdotes–everywhere I turned. Well, actually it was all on NPR, but the station seemed to be barraging me all day, reminding me I could only hide so long.

So here I am back to report. Well, to report that nothing has changed.

For instance, I am looking for a new tractor mechanic, again. In mid-December Ralph ran our previous new tractor man off while I was at the grocery store. First Ralph called while I was in the dairy aisle to say he was calmly explaining about a repair that was still needed when the repairman turned on his heels, jumped in his truck and drove away. Ralph was genuinely upset because he didn’t understand what he could have said that upset anyone.

As soon as Ralph hung up, the guy called to say that he would be glad to work with me but that he could not work with Ralph again, that Ralph had yelled and swore at him. I apologized, of course, but in Ralph’s defense, the repairman a big beefy Southerner with motorcycle style tattoos so I think he’s never heard swear words. And I had warned him ahead, several times, that Ralph is on the Alzheimer’s spectrum.

In any case, the repair issue upsetting Ralph is not a big problem according to Jason, our tractor saint who was able to operate the bush hog (see early entries for explanation of machinery I can’t really explain) slowly but adequately.

UNTIL THE TIRE BLEW. Fortunately,  a different company takes care of tractor tires. Someone came and changed the tire. Unfortunately, according to Ralph some lugs (is that the term) were lost along the way so the tractor can’t be run until they are replaced. But it’s freezing outside and Jason says he doesn’t need to mow again until the spring growth sets in.  So as usual the tractor is one hold.

And then there was Christmas. Fifteen of us together in one house for six days give or take. Ralph loved most of it. I was more ambivalent. Everyone kept telling me he seemed “better.” And with everyone around, Ralph was more energetic. He also drank more and smoked more. And I was busy being the silent keeper of things running smoothly. A tiring role especially for someone with flu-like symptoms. By the last night I was exhausted, or that’s the excuse I’m giving for why I put the electric tea kettle on the stove and turned on the burner.

“Why is the stove smoking like that” someone casually asked just before the flames shot up. Ralph was the hero who put out the flame while everyone else opened windows and tried to allay my worries that I might be catching up to Ralph on the cognitive spectrum. I hope they’re right but I have learned one thing:

Nothing smells less like Christmas than burning plastic.

Now Ralph and I are back to our quiet routine, him napping and me doing chores and organizing his life.

Frankly I couldn’t be happier. I am sure there will be more ups and down this year but for now I am perfectly at peace with the status quo.

Happy New Year.

Celebration Amid Stress

flowers                                              my bouquet from Ralph (with help from our daughter)


For most of this autumn all I could think about/write about was the tractor (back in the shop for yet more repairs due to user-error I suspect), which became the symbol of the stresses of life with a spouse on the Alzheimer’s spectrum. Now I find myself writing yet a happy description of our life for the second time in a row! Perhaps we have reached another plateau or perhaps I have adjusted to whatever plateau we have been on for a while…

The dangerous temptation to think Ralph is somehow getting “better” also pops into my mind, especially because as always happens, visitors over Thanksgiving commented that Ralph seemed better than they expected. He was better that usual because as also often happens, he is more alert and less passive around others—if he’s comfortable with them–than when alone with me. Since he was also the more genial, gentler post-diagnosis Ralph, he was a generally entertaining presence.

Not that rough patches didn’t abound in an eight-day week with a houseful of guests on the farm. But the stress caused by the tensions and physical ailments of other family members and friends had nothing to do with Ralph. If anything, he helped smooth some of the week’s rougher patches.

He also began to enjoy his grandfather role more, both with his older grandkids and with his namesake grandbaby whom he began to hold and cuddle even without being asked. In fact this morning, in our suddenly quiet house, he said he missed BabyRalph—who though exhausting was certainly not a cause of stress.

And Ralph really got into the small-scale festivities surrounding our 40th wedding anniversary. Actually so did our kids, who did a kind of countdown to midnight (and made us stay up way past our bedtimes) on anniversary eve, then opened a bottle of bubbly that we all shared while listening to the John Prine/ Iris Dement duet of “In Spite of Ourselves” that is considered by some to be “our song.” As we all shared that moment of silliness and laughing, a moment of euphoria, part of me couldn’t help observing in a kind of awe that I was having an experience with Ralph that I haven’t for a long, long time—the sense of being on equal footing, of standing together on the same ground, of being a wife more than a caregiver, of being loved not simply needed.