P.S. From Ralph: What Study?

P.S.        P.S.       P.S.     P.S.       P.S.    P.S.

So just yesterday I wrote about the study Ralph has agreed to participate in to study the effects of a new drug that might inhibit the plaque build up that leads to Alzheimer’s.

This morning over coffee we were having a perfectly normal discussion of the news, what to have for breakfast, etc., when I mentioned to Ralph that maybe I should cancel the check up appointment with his internist coming up this week since he would be getting checked so thoroughly through the study.

He looked at me and said, “What study?”

I have probably mentioned that Ralph’s memory issues have a silver lining, that he particularly forgets any moment that has produced anxiety or unpleasantness in his past—in other words any argument he has had with anyone, any disappointment he suffered in the past, any moments of tension or distress. Evidently, he has forgotten our trek last week because it was anxiety producing–which is fine because if he ultimately gets rejected he won’t care, and if he is accepted and has to go through more tests and appointments, each will fade as soon as it’s over.

Another win-win.


For Ralph and me at this point in our journey, participating in trials and studies concerning Alzheimer’s is always win-win, but it is important to recognize that participation in experimental studies is a very personal decision and not the right decision for everyone or every situation. When Ralph was first diagnosed, we signed up for a trial that involved one and one exercises; it didn’t go well. Rick hated the questions and resented the process. Later, when he attempted an MRI for another possible study, we encountered the bb pellet problem. [For those who were curious, Ralph’s parents were very lax about firearms and allowed Ralph to have a BB rifle when he was around six. I picture him as a tow-headed little “woods booger,” as he called himself, in his favorite cowboy shirt–which he still has–chasing after birds and squirrels until he promptly shot himself in the tongue (luckily not the eye). His parents may or may not have taken him to a doctor, but nothing was done. Ralph forgot he had  the BB  until a dentist noticed it on an x-ray thirty years later. Rick said his mouth got quite hot during the MRI, and the pellet distorted how the MRI works, making it unreadable.] At some point I talked to a social worker who pointed out that no one should ever feel pressured to participate in studies and that health and emotional well-being come first.


Ralph “Passes” the Test to Participate in Alzheimer’s Study


The research nurse at Emory’s Brain Center called a week ago asking if we—Ralph and I because caregivers play an active role—would be interested in participating in a research study.  The nurse had already looked at Ralph’s chart and said she thought he’d be a good fit.

The study is  being conducted by the pharmaceutical company Merck  on a possible treatment to slow the progression of Alzheimer’s. As the Merck brochure says, “This study is designed to test the idea that inhibiting a specific enzyme, BACE, may slow or stop the progression of Alzheimer’s disease. The drug in this study, MK-8931, is a BACE inhibitor, which means it helps stop the BACE enzyme from producing amyloid beta peptides. Amyloid plaque deposits in the brain may be the underlying cause of Alzheimer’s disease. By inhibiting the actions of the BACE enzyme, it may in turn help stop the formation of those amyloid plaque deposits.”

In other words, the study hopes to find a way to slow down the build up of the plaque that is assumed to cause Alzheimer’s and that is evident in Ralph’s brain according to the spinal tap his doctor administered several years ago.

I glanced at Ralph, who was on the couch having his afternoon nap, and said yes, I thought we might like to participate. I was actually quite excited. In the past Ralph has not qualified for studies and drug trials like this because of his MRI problem—the bb pellet that has been lodged in his tongue since a shooting accident when he was eight-years-old not only uncomfortably heats up during the procedure but distorts results—but this particular study has dropped the MRI requirement.

The nurse immediately emailed the study’s descriptions and consent forms, which I read and explained to Ralph. And explained again.

“I hate taking pills.”/“You won’t even notice the extra pill.”

“How often will I have to go see the doctor?”/“Every other month.”

“What if I’m stuck with the placebo? It’ll be a waste of time?”/“But the study will give you the real pill afterwards, and in any case, the study will benefit others, like your kids who are at genetic risk.”

“Ok, it sounds good. But I hate taking pills.” The familiar loop repeated itself over and over, and each time he ended up agreeing to participate, if with tepid enthusiasm.

Three days later we were at Emory. (Evidently the study, which has already been going for a year or two, needed a few extra last-minute entries and the deadline got pushed up so we were a rush job.)

Ralph took two memory/cognitive tests which have qualified him although “passing the test” is not the term I’d use exactly, at least not for the second test in which the cut off number had to do with having too much memory. Ralph evidently “passed” with flying colors because his memory score was very low. I have to say when the nurse whispered the news to me, my heart sank a little.

Now we are waiting for Merck to look at the scores before scheduling some physical tests. If Ralph makes it through through those, he will begin taking the extra pill with his Namenda and Donepezil daily. There is a one-third chance or receiving a placebo, a one-third chance of receiving a lowish dosage of the medication, and a one-third chance of receiving a higher dosage. I will be expected to keep track of his progress in some form that has not yet been clarified—I warned the research nurse that I may be travelling some in January after my daughter gives birth, but she said that would not be a problem.

Once Ralph starts the pill, we will meet every two months with medical personnel, including his neurologist, a dermatologist and the research nurse, for the next two years. When the two years are up, if he’s been taking a placebo, Ralph will then receive the higher dosage of the actual medication; otherwise he will continue on the dosage he started with.

I see no downside (except, if I am honest, the extra effort required on my part) and plenty of pluses. Because we are entering the study late, there is plenty of knowledge about side effects—minor and rare. The frequent visits to Emory are a great excuse to get Ralph out of the house and into the world. Plus he will be receiving more detailed health check ups on a more frequent basis. We will no doubt have a better sense of where he is on the continuum than we do now.

And, although he says he doesn’t care, the idea of doing something useful for others, of being part of a cause larger than himself, will give him a sense of purpose; even at Emory the other day I saw the shift from anxiety (which may have caused his low memory score) to energetic good cheer as he interacted with staff.

And if the medication makes a noticeable difference in Ralph’s condition, well that would be great too. Fingers crossed.

My Car Is My Caregiver



Dear Red Prius,

My first car was a bright blue sedan that I drove to Atlanta when I was 22. I don’t remember the brand, only that I hated how visible it made me, especially since I was not the best driver.

I traded the blue bomber in for a used telephone “van” that had been refurbished by Ralph—his first entrepreneurial venture was buying and fixing  up used phone trucks, then selling them to counterculture types like me; the streets of Midtown Atlanta were full of Ralph’s trucks in the early 1970s.

The brakes went out on my van a week after I bought it. I was rounding a curve and ended up down an embankment. Fortunately I wasn’t hurt. Naturally Ralph felt terrible. He helped me fix the van and sell it.

(Actually, Ralph disputes my car history, says I got the blue bomber after the truck disaster, and he may be right. In any case I don’t remember what I drove next.)

We got married five years later, and for the next multiple decades I drove a series of practical, second-hand sedans (with baby seats), SUVs (for carpools and horse-trailering), and (once the kids were gone) compacts. They were all non-descript, aside from the dents I added, and I could care less.

A year and half ago, though, I got you,  Red Prius. I bought you for practical reasons like gas mileage and comfort, etc., and I admit that I chose your red color because you were cheaper than the silvery blue model.

The irony is that these days what I love most about you is your color. It makes you  So Visible, so easy to spot among the sea of tans, blacks, grays and whites on every road and in every parking lot.

I often find myself writing here about the difficulties, the frustrations, the borderline depression care-giving causes me. I think one of my secret worst fears is that my memory is going too. I said this to a friend recently and she laughed, “But Ralph isn’t contagious.”

Maybe not, yet I often feel as if my brain is clogged with the details of thinking for two. An adage of care-giving is that if we are tense or irritable, our cognitively impaired spouses (or parents) sense and react in kind. The flip side is that I am vulnerable to catching Ralph’s anxiety, and when I’m anxious my brain does not function at its best.

Lately I have an urge to simplify: the less I have to worry about the better. Less stuff means less stuff to keep organized and clean without Ralph’s help. Fewer commitments mean fewer complications to arrange for Ralph. But I also want to stay active and involved. Simplification can be a slippery slope that I don’t want to begin sliding down too fast.

Red Prius, you have been a godsend. It takes one item off my overloaded mental table—no more walking out of the supermarket or doctor’s office or bank or lawyer’s meeting or movie theater or restaurant or political meeting worried where I parked. One glance each way or a click of my key button and there you are, Red Prius, brightly reminding me that I am in control, at least to the best of my ability…A small comfort maybe, but it’s the small comforts that count.

So thanks for making my life better Red Prius. I promise to take care of you as well as I take care of Ralph.






Lately, I’ve been complaining a lot here about the difficulties of living with Ralph as his cognitive skills wobble and wane. While I hope that my honesty in voicing frustrations as I explore ways to manage as caregiver-spouse has been useful to others, I know I sometimes lose perspective (thank you to friends here you rein me in).

So it’s good to be reminded that life is not a straight line, especially when Ralph is doing the reminding:

1.The day after the contractor incident earlier this week (see ), Ralph asked me whether he’d had an argument with a contractor and what was it about. I told him, trying to soft peddle as best I could.

“Oh well, we can replace the system if he thinks it’s necessary,” he shrugged.

Despite my expectations, he hasn’t brought the subject up again, except to        acknowledge that he is embarrassed by his own behavior. Pre-diagnosis Ralph was almost Trump-like in his inability to apologize for mistakes so I consider his contrition a sign of emotional growth.

2.Then yesterday, while listening to the news, he made a comment so astute I must share it with you all. Someone on the radio complained about political correctness and Ralph stopped sipping his coffee to say, “Why would anyone want to be incorrect about politics or anything else?”

Why indeed? I borrowed his observation and posted it on my facebook pages where “likes” flowed in. Although he may not remember the details, Ralph can still cut through to the chase.

3.The kicker is a conversation we had an hour ago. Periodically I must drive to St. Petersburg, Florida, to manage the affairs of a disabled cousin. Since it’s a seven-hour drive each way, I have to spend the night. I long ago gave up on getting Ralph to come with me. Last year I drove down with a friend who also has (difficult) family to visit in the area. Another friend may drive down with me next week; she needs a break and I’ve bribed her with the promise of a gourmet meal, a nice hotel and the Dali Museum. But she has warned me she might have to cancel at the last minute.

Ralph must have heard me talking on the phone about the trip as he was napping on the couch because out of nowhere, he sat up and OFFERED TO COME WITH ME. Note the capital letters in red ink. I was/am flummoxed.

Whether he comes or not is not the point—and frankly, I’d hate to have him miss his art class, which is so important in his mental life (one week wouldn’t matter but he has to miss class the next week too, ah the complexities of Ralph’s usually empty schedule!).

The point is that he is still capable of breaking through the Alzheimer’s shell of inward-gazing to think about someone else’s well being, and that someone else is me, not as his caregiver but as his wife whom he wants to take care of.

So at the moment I am feeling an emotion that our relationship doesn’t often raise in me  lately—I ‘m not talking about affection, although I am feeling that too, but gratitude that this particular man is in my life.




Ralph ran off a contractor I was in the process of hiring this afternoon. It was almost funny, or will seem so in a week or two once I calm down.

Picture the scene: The sun beating down in 90 degree heat outside the house; my pen poised to sign the paperwork for repairs, Ralph appearing, fresh from his nap and barefoot; the contractor clutching his clipboard. Ralph asks Why can we just clean the system? The contractor explains. Ralph asks the same question again. And again. Why can’t we just clean the system? Each time a bit more belligerently.

The contractor tries to explain what he has already explained—that the system is past cleaning—and then tries again. He draws Ralph a diagram to show what he means. I can tell that the contractor doesn’t understand why Ralph is sticking so doggedly to an idea he has just explained won’t work and I can see and hear Ralph’s growing frustration. Both men become increasingly defensive. Meanwhile I stand there feeling helpless to diffuse the situation.

The irony is that the contractor was recommending exactly what Ralph had told me he thought needed to be done just yesterday.

Ultimately the contractor said he didn’t think he could do the job and Ralph said something less than gracious back (I have blocked what). As Ralph headed back into the house, I apologized under my breath to the contractor, explaining briefly that Ralph has Early Alzheimer’s.

Was that a betrayal to ease my embarrassment or an explanation that needed to be given? Should I even use the A word since Ralph actually officially still as MCI but no one knows what that is? I’m not sure.

The thing is that in his glory days, Ralph was not an easy man to work for—a demanding perfectionist who was also careful about every penny—and I sometimes had to run interference, a role I hated then. Evidently I still do, but Ralph was coming from a different place this afternoon. Locked into a narrow loop of one question he wanted answered over and over, Ralph was not processing the information he was receiving.

Although he is rarely aggressive in dealing with me or anyone else now, different versions of this problem have come up several times recently, usually related to business matters. I generally try to avoid involving him, but sometimes that isn’t possible. Sometimes the people Ralph is dealing with know he has a cognitive problem and give him leeway; sometimes they don’t and become puzzled if not belligerent.

A few minutes ago I received a call from the contractor’s wife apologizing profusely, saying that the contractor had no idea and would be glad to help us in any way. Meanwhile, I have already called someone else to by tomorrow. My guess is that a lot of conversation with Ralph for the next week or so will focus on this afternoon. What did the guy say? What did you say to him? Have you found someone to fix the filter? Who was the guy who came to fix the filter? Is the filter fixed? I will listen and nod, straining to be patient and silently kicking myself for not handling things better in the first place.




I woke up this morning saying those words to myself. Which is a good thing.

The truth is lately Ralph has been getting on my last nerve. When he starts on one of his loops—lately his favorite has been the history of our dogs and the order in which they died—I tense up and cut him off saying I don’t want to talk about it. When he gets confused following simples directions or an explanation, I am dismissive. When he lights yet another smelly cigarette, I want to pull my hair out.

I could go on with a litany of complaints about Ralph and admissions about my behavior/attitude. But there’s no need, is there? Probably, hopefully, I am making myself sound worse here on the page than Ralph would say I am in real life. And if I am in a state of constant annoyance toward Ralph, I am in an even greater state of annoyance toward myself.

The thing is that sometimes I forget that living with MCI is a slog not a sprint. What I unfortunately don’t forget is that there is no end in sight, at least no good end.

The other thing I forget is that while we are in this together, we are also each in this alone. While I can try harder to empathize, I cannot know what Ralph is going through, and I can’t expect him to know what I am handling. I have to take responsibility for managing my frustrations and creating my joys. When I don’t, when I slip into blaming everything on the MCI, life goes downhill.

I am sure I will slip again, but for now, the sun is rising above the trees, the dog is chewing her fake bone, the coffee is brewing and all’s right, or at least okay, in this corner of the world.


Travel With Ralph (or Not)


For the last two weeks, Ralph and I have been discussing a trip scheduled for this Labor Day weekend to New Orleans to babysit our twelve-year-old granddaughter while my daughter and son-in-law take their “babymoon”.

I brought up the possibility to Ralph a month ago when they first asked me to help out. Since I was driving down there–Ralph has made it clear he never plans to step onto a plane again in his life–I suggested he might come along.

I suggested but assumed he would say no. Since the family moved to Louisiana a year ago, I have visited probably six times. Ralph has been once, for a family Thanksgiving, and he didn’t exactly enjoy himself. Staying in a hotel discombobulated him, and he missed his dogs.

But he must have been in a good mood when I asked, for to my surprise, he said sure he’d come. I started fantasizing (and I use that word purposely) about a pleasant weekend of good meals and maybe a visit to the WWII museum, which I told him he would love.

A week later I mentioned the trip in relation to something else going on and he didn’t remember our first discussion.

“Why are we going?” he asked.

I explained. He looked perplexed. “And I said I’d come?”

I nodded. He said, “Ok,” then promptly forgot all about the trip until the next time I brought it up. We’ve had the same conversation daily for weeks.

Each time Ralph sounded a little less enthusiastic. Meanwhile I was growing a little less enthusiastic too as the reality of what it might take to keep both him and my granddaughter happily occupied began to sink in. I’d been sort of bragging to friends that Ralph was actually coming with me this time, but I started hedging, saying that if he resisted I wasn’t going to force him.

The truth is that traveling with Ralph is no more fun for me these days than it is for him. He was never the most adventurous companion, but he was generally game. Now his anxiety and low energy makes every trip a complicated obstacle course of arrangements: limited activities, limited walking, no wandering, no spontaneous choices, a lot of naps. I hear how trivial these complaints are. All that’s required is patience and a willingness to slow down, but that’s the rub. A husband in his sixties with cognitive impairment is in many ways equivalent to a typical eighties something husband; I know I’m not being fair, but while I hang on to late middle age by my fingernails, I resent him dragging me into older age.

Yesterday we looked at the weather report for the weekend: thunderstorms. Now my granddaughter and I are perfectly able to occupy ourselves playing cards, watching movies and eating junk food. Ralph does none of the above. What he does when faced with free time, of which he has much, is smoke cigarettes outside on the porch. But my daughter’s apartment has no porch. He’d be sitting outside in the rain.

“You’re off the hook,” I told Ralph and breathed a guilty sigh of relief, thinking how much more fun I would have.

This morning I was starting to pack my single bag when the phone rang. My granddaughter has been invited by a friend’s family to spend Labor Day weekend at a beach resort. Evidently I’m “off the hook” too.