Tag Archives: Emory University Memory Center

Moving “With” Ralph

Alzheimer's Spouse Issue, Uncategorized, , , , , ,

 

moving.jpg

I meant to write about our last Christmas on the farm, about Ralph and his oldest son taking out guitars and playing together as everyone sang along on Christmas eve, Ralph thoroughly engaged for those few hours, how family and friends who’ve celebrated with us every year for decades and decades gave speeches at dinner that moved others to tears, how difficult I found it (still find it) to grasp the import because my bittersweet emotions were tinged with relief.

I meant to write but really once the 26th came, I was too embroiled in the present and future to worry about the past, event the immediate past.

It is the second of February and our movers are coming on the fifth of March. All my books are packed (minus the hundreds I donated to the library). So are most of my pictures, handmade glass and most of my kitchen. Next weekend I am driving to Nola with our bed and however much I can squeeze in a u-haul. I want the bed ready for Ralph when we arrive on the fifth to beat the movers who will show up the next morning.

The fact is that the practical issues are all falling into place.  There are no serious glitches. The farm is under contract to my next-door neighbor who plans to put it into the rural preservation program. The movers are hired. The renovation is only a few weeks behind schedule and not too over budget so far. I have been able to get things done and keep up with my other work and with my social life. My days are full, but not overwhelming. In fact last weekend a friend and I organized our mutual birthday trip that will take place in May (with my son coming to stay with Ralph while I’m gone—a lot easier asking him to come to Nola than to the isolated farm).

I meant to write an update on all this because part of me is frankly proud of myself for pulling things off so well, but I haven’t until now. And lack of time has not been the real problem.

The real problem has been that since Christmas, I have been avoiding facing my feelings toward Ralph too closely.  I do his life list, I make sure he takes his pills, takes his shower, eats his meals. But I have filled my days with chores and conversations and decision making that I deal with on my own. And while I dutifully, even obsessively worry about how I can make Ralph’s adjustment as easy as possible—from walking to the corner store instead of driving, to dog walking and poopscooping, to learning his way around a new house—I have felt basically numb where Ralph is concerned. Numb has seemed better than admitting the mix of resentment at having to do everything myself and exhilaration at doing everything the way I want without kowtowing to him as I did through most of marriage.

Or that’s what I have assumed. But then this week I was jolted out of my stupor. Early in January I contacted the neurologist who’d been recommended by multiple sources as the best in Nola for Alzheimer’s. I was told to have Ralph’s current provider, Emory, send a referral. So I called the social worker at Emory who told me to contact my medical provider for the referral. I used the portal that everyone must use these days to send a message asking for the referral. I didn’t hear anything back for over a week so sent a new message, this time to more than one of my providers asking what was up. Someone called me back the same day and said the referral had in fact been sent, I just hadn’t been told. I immediately called the Nola doctor’s office and was informed by the scheduling secretary that less than ten minutes before my call she had received a memo from the doctor’s nurse saying he was not taking new patients. I explained that I had just learned that Ralph’s referral had been sent in a week ago. She was extremely sympathetic and immediately messaged the doctor’s nurse who responded that she knew about us and would call me back“ shortly.”

I heard nothing that day. I called the next day. A different scheduling receptionist found Ralph in the computer as having had contact with the nurse. Again I was told she’d get back to me “shortly.” Again I didn’t hear anything.  For three days I kept my phone at my side wherever I went, kicking myself for not checking with Emory earlier, for not starting the whole process last year in fact, for really screwing up. And just when I had given up and stopped expecting the call, there was the nurse on the phone as if it was the most natural thing in the world. Ralph’s first appointment with his new doctor will be in May.

Suddenly my stupor lifted. Having a doctor in place has shifted my whole orientation. I am still resentful and exhilarated, but more exhilarated than resentful. Now that I’ve found Ralph the doctor he needs, I know everything else will fall into place

 

PS  I should have gotten the ball rolling sooner. If anyone reading this is contemplating a move, start your doctor search as early as possible. Alzheimer’s specialists are at a premium. I feel a new empathy for expectant parents who put their unborn babies on waitlists for daycare and preschool.

Alzheimer’s Leaves Caregiver Fishing For Memories Too

Alzheimer's Spouse Issue, Uncategorized, , , , , , , ,

fishing

 

 

 

 

Ralph started the Ritalin study through Emory last week and I’m waiting to see some spurt of energy. He still lies down to “rest my eyes” at 5:30, resting them so deeply that I have to work to rouse him at 6:30 to eat dinner, after which he has his cigarette and goes back to sleep between 7:30 and 8. So my guess is that he’s been given the placebo.

Which is actually okay with me. As I acknowledged when our practitioner first said Ralph might qualify for this study, I have mixed feelings. (The future good that participation may do for others is a given but not really part of my equation.) I do not want to deprive Ralph of the chance for a more normal life or any chance to enjoy life more, and it is possible according to the nurses and social workers that Ritalin really will create a new zest for life.

But what if he ends up with more energy and zest than I have? That would be a cruel irony, wouldn’t it?  Because my energy is certainly depleted. I am not sure how much I can get away blaming my mental and physical exhaustion on caregiving.  Laziness and fear of challenge play their parts in drying up, or avoiding, my creative ambitions. But 15 years–10 as daughter/caretaker segueing, with a year or so of overlap, into five as spouse/caretaker–is a long time in what has never been a natural role for  me.

No matter, my competitive nature has turned  this worry into a positive goad.  To avoid being left in the dust, I am now revving up my energy with a new diet, more regular exercise, and visits to my therapist, whom I stopped seeing shortly before Ralph’s diagnosis when our relationship and my own sense of self finally seemed healthy.

Which brings me to my second worry, what if Ralph on Ritalin reverts back to the Ralph my therapist has reminded me he used to be: autocratic, critical, competitive, jealous. He wasn’t that bad, I laughed, but then bad memories began to surface. I could go on and on with a list of the examples of his faults and bad behavior I’ve begun to remember, and I would except just now I was interrupted by a phone call that’s thrown me completely off course….

The caller, JG, was starting out as a real estate agent when he met Ralph, then in his entrepreneurial prime. The two hit it off. , Over the years, I would hear Ralph talking to JG on the phone, explaining how to analyze values and bottom lines, offering professional advice but also yaking about fishing, another passion they shared. JG was younger and we never socialized much. But he did bring his wife and kids out to the farm for several visits shortly before they moved to north Florida. His wife turned out to be lovely—we had immediate rapport. His son, who was six or seven on that first visit, was obsessed with tractors, so he was in heaven when Ralph took him on the riding mower. (I don’t remember if they played on the tractor too.). The next visit, the boy was old enough to ride the mower himself, with a lot of supervision.

JG still comes to Atlanta regularly for business. Since we closed our business and turned the one rental property we still own over to his management company, JG has known, in vague terms, that Ralph was having some kind of problem and no longer actively involved in decision making, but he has never asked for details and I didn’t offer. He hasn’t seen or talked to Ralph for ages. The last time I talked to JG was a few years ago about a business issue. We were friendly but careful with each other.

He called today over another small business matter,. When he asked how Ralph was, I told him Ralph’s memory was holding stable.

“What’s wrong exactly. I never asked but is it Alzheimer’s.”

“On the continuum but still early stages,” I explained. “You might not even notice any change at first.”

“So he still fishes?” “No.”

“Oh, he can’t fish?” “No, he has no interest.”

“No interest?”

JG’s shocked silence was deafening. Here was someone who only knows Ralph as a man  avid about the activities he loves. I took back what I’d said about JG noticing—he would definitely register the changes  I’ve begun to take for granted.

JG began asking the questions he’d never asked. WeI had a long, serious discussion.

“I didn’t want to invade your privacy.” That made sense because I’d been vague about Ralph’s situation early on, not sure how much to share. (These days I share everything ad nauseum.)

“It is hard to imagine Ralph unengaged. He was so interested and involved. He was …” I could tell how upset, really upset, he was. “He was like an uncle… …”

I invited him visit, with his son who is now a 6’3” teenager but still loves to farm work. JG said he’s been waiting for the invitation and will make sure to come soon.

I hung up in a different state of mind from the one that set me writing this morning. I am feeling tender toward Ralph now, of course. And toward myself, realizing how tenuous my emotional memory of Ralph and who we were together, the good and the bad, has become.

Ralph’s Annual Mental Check Up

Alzheimer's Spouse Issue, Uncategorized, , , , , , ,

doctor

Ralph had his yearly mental check up yesterday. A slow learner, after four years I have finally realized that there is no reason to bring up appointments ahead of time. So when he woke up at eight, I announced we had to be ready in two hours to head to Atlanta to see his doctor at Emory. Of course, Ralph was a little tense on the drive in, but less anxious than he would have been if he’d had more time to worry. And I didn’t have to have the following conversation in the car more than a few times.

Head or hands? he asked. (We have seen a dermatologist at Emory recently as well so asking this was a positive sign.)

Head.

What are they going to do?

Ask you some questions probably.

Will it take long?

I don’t think too long.

I am not looking forward to this.

I nodded but secretly I have come to look forward to our Emory visits with Nurse Practitioner Stephanie V. While Ralph gets his testing, Stephanie always meets with me alone for an update, a conversation that I find strangely comforting. She asks my impressions, and then lets me ramble a bit. Her advice tends to be straightforward and useful. She never fails to ask how I am doing. I always get not quite teary but close. I always leave feeling reassured that I am handling things better than I thought.

As for the appointment results… Amazingly, they showed exactly what I told Stephanie I’ve sensed: that his objective memory, for words for instance, seems to be holding steady; but that he seems to be having more difficulty  carrying on conversations or activities like following directions that require more complicated processing.

In the testing Ralph actually improved his memory for words, remembering more animal names and more words beginning with the letter F. (At least that’s my memory of the results—in fact as soon as I leave Emory my own memory of what has been said becomes a bit of a blur.)

What dropped was his ability to connect the dots when he had to include numbers and letters, i.e., go from number to letter to number. The test, which he completed without errors last year in 70 seconds, took him 120 seconds this year with several mistakes. In other words he is having more trouble with more complicated linkage.

I am not sure how to read this reversal in strength and weakness and don’t think it matters too much. Basically, the holding pattern we have been in still holds and will keep holding until it doesn’t.

Moment of Reflection: Where We are On Our Alzheimer’s Journey

Alzheimer's Spouse Issue, Uncategorized, , , , , , , , , , , , ,

journey.jpg

Last week I had the opportunity to speak on a panel about caregiving in to a group of nurses and nursing students at Emory University in a conversation titled Lived Experiences in Coping. The other two members of the panel, the wife of a man with Parkinson’s and a woman who has MS, were actually nurses themselves so I was a bit intimidated at first, but I think I held my own (although I fear I went beyond my 15 minute time limit). And it was a fascinating morning as we shared perspectives and answered questions from the professionals who asked over and over what they could do to improve the care experience.

As valuable as the meeting was, what was most useful to me was the preparation. In the invitation to speak I was asked to discuss how we arrive at Ralph’s diagnosis, and how the news and illness trajectory have affected my and Ralph’s lives.

Not surprising questions or ones I haven’t thought about in the past, but ones I have avoided thinking about for a while. I used to take stock regularly to keep perspective, but lately it’s been easier (i.e. less scary or anxiety producing) just to rock along day by day without considering the long picture and the implication Being asked to talk at a symposium forced me into that area of necessary discomfort.

So what I jotted down:

Diagnosis came in 2013. Before that I didn’t want to think his memory problem was serious in part because his failing memory coincided with a personality change I liked. In fact I realize that for those few pre-diagnosis years we were in a SECOND HONEYMOON—he was less angry than he had been as a younger man and a sweetness emerged that he had not shown before. If he was secretly stressed, I didn’t choose to notice.

Then for maybe six months before the diagnosis, Ralph went from forgetful to what I found at the time annoyingly inattentive. I thought he wasn’t paying attention when I had to repeat things over and over. And he was often argumentative at night, so we went to bed angry at each other, but while I’d wake up still angry, he’d wake up denying there’d been any friction the night before. But still we were closer than we’d been for years.

Then his memory tripped him up more obviously—I have written about the fishing trip that made him realize something might really be wrong because he couldn’t keep up with the other guys—and he saw our family doctor who sent us for tests. Ralph and I were convinced he had Lyme’s disease.

Between taking the tests and learning the results we went from honeymoon to LIMBO. In real time I am only talking about a month or two from test to first diagnosis and another three months until we saw Dr. Lah at Emory’s Brain Clinic. But the period felt much longer—one of those crucial moments in time that stretches as if time has slowed down to allow for the heavy significance. We didn’t know much about Alzheimer’s. We were both anxious. Neither of us knew exactly what to expect but we were talking about it A LOT. I remember a car trip, six hours talking away, feeling oddly close as we faced an uncertain future together, both of nervous but open and oddly upbeat. The ride was actually kind of fun.

Then we got the diagnosis and went from Limbo to PURGATORY. One day he was one person, the next he was someone else. Not that his condition changed, but one it was NAMED, it was much more scary. Suddenly he was terribly, terribly anxious and suddenly I felt the need to limit plans, to take over his business (and close it), to act as a buffer between Ralph and all the people who didn’t know he had an actual condition that was causing him to act certain ways. Purgatory lasted for a long while. He seemed to slip dramatically and then, once he began his drug regimen, he regained some ground, only to slip a little more over time. His memory did not get worse—it was already terrible in the first tests—but slowly other aspects of the Alzheimer’s spectrum showed up, like passivity, lack of time awareness, loss of sense of direction, withdrawal from the world, and a general malaise along with the frankly beneficial loss of memory of all arguments and disagreements as he embraces those with whom he had fallings out. My symptoms as caregiver also showed up—greater impatience and loneliness balanced by a kind of desperate energy and new to me gregariousness as well as moments of patience I didn’t think I could manage.

For a while now, we have been on a PLATEAU. Ralph has been holding steady more or less. Some days he’s more with it than others. But I can’t really see much difference from week to week.

The big difference is in expectations. It’s not that I have bad ones. Or not exactly. I have none at all. The rule of thumb is that Alzheimer’s progresses, but the rate is so varied that I have no clue how it will progress in our case, what route it will take or how long. But I do know that when we move from this plateau, the next stage will not be good.

P.S. From Ralph: What Study?

Alzheimer's Studies, , , , , , ,

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.

P.P.S.

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.

 

Learning to Love Ralph’s Mental Check Ups

Tracking Changes, , , , , , , , , , , , ,

“We” had “our” six month check up the other day at the Emory Memory Clinic. “We” and “our” are operative words because I probably get as much out of the appointments with our Nurse Practitioner Stephanie as Ralph does. The visits are medical but also psychologically therapeutic and unlike any other doctor visits I have ever experienced.

I admit it never starts well. Ralph asks if we really need to go all the way there (I have learned not to mention the appointment until that morning). And the waiting room time is always uncomfortable, Ralph and I  both secretly looking around at the other couples—everyone present is in a couple whether husband/wife, siblings, parent/child, or cared for/caregiver—trying to guess which person is the patient. I frequently realize I have guessed wrong when the person I assumed was impaired is the one who heads up to the nurse station to sign in. Ralph gets anxious because seeing people with his diagnosis but more advanced into cognitive impairment forces him to consider his own future. I get anxious for pretty much the same reason.

But once we are in the actual room, I am probably more myself than at any other time these days because we are together with someone who knows our situation, who does not look sympathetic but slightly askance at anything we say. This visit Ralph was to have a battery of tests to check his status. The tests take about 45 minutes; I actually thought of sneaking down to the second floor to say hi to a friend who works in the building. Instead those 45 minutes were filled with conversation with Stephanie about my concerns and worries. When I mentioned issues I don’t bring up anywhere else or to anyone else out of some probably misguided mix of embarrassment and guilt—and there are issues I do not bring up in my support group or even here—she responded with matter-of-fact solutions and understanding of someone who has witnessed all the permutations of cognitive impairment. My tendencies toward defensiveness, guilt, and self-justification melted. I could see clearly where I thought Ralph was on the continuum, that his memory seems to have held steady but his energy, curiosity and interest in the world has faded.

And then Ralph returned from his testing in buoyant spirits. He felt he had done really well on the test. And he had. Although he got more questions wrong than he thought, the score on his memory has held steady. (Shout of thanks to Namenda and donepezil.) He still qualifies as Mild Cognitive Impairment and is holding Alzheimer’s at bay.

We are scheduled to return to see Stephanie in six months. She said that if it was inconvenient since we come from a distance, we could skip that appointment. No way. I am looking forward to it.

“In The Zone”

Alzheimer's and the Arts, daily life with MCI/Alzheimer's, , , , , , , , , , , , , ,

Ralph took his first art class in twenty years this afternoon.

He agreed to go only because our physician’s assistant Stephanie gave him a “written prescription” to take art lessons during our last visit to the Memory Center at Emory.

Ralph has always been a natural draftsman, and in his thirties he took courses from a couple of relatively renowned artist/teachers who gave him real encouragement. Then life got in the way and he didn’t stick to the art. He always said he’d take up the painting again once he retired. But that was before he was diagnosed with (not so) Mild Cognitive Impairment and he has not touched a paintbrush since.

So when he told Stephanie that he had his paints all set up in his office in the barn and was going to paint soon once he had things organized, I probably rolled my eyes. He does go to his office to “straighten and organize” most days, but really he sits and smokes and talks to the dog. I am glad he has somewhere to go and be comfortable. I certainly don’t care that the office will never be organized, but I do fear and sense the mental atrophy setting in.

Like everyone involved with dementia and cognitive issues, I am aware of the benefits of art therapy. [For those interested there is a documentary, “I Remember Better When I Paint” worth checking out as well as numerous articles and essays to be read on-line.] But Stephanie and I knew better than to push that angle with Ralph, who shies away from that word “therapy”.

Instead Stephanie blamed human nature, explaining in the nicest way possible that if Ralph didn’t take an actual class he would never start to paint on his own. She told him that he needed the class to jumpstart and structure his time. (She also prescribed a weekly night out for dinner or a movie, but following that direction has proven harder for reasons I’ll explore another time.) What he would hear as nagging from my mouth became sound advice  when it came to Ralph from an authority figure who also happens to be attractive and charming.

Fortunately, as Stephanie agreed, Ralph doesn’t need to be in a special class for the cognitively impaired. He just needs a class period: A time and place on his schedule; plus an environment with other students good enough that he takes the class seriously but not so good that they intimidate him. Not an easy situation to find in a small town, but two friends separately recommended the same art teacher who has been working with a group of adult students for several years. We talked. I assured her that Ralph was not a beginner, but I also felt obligated to acknowledge Ralph’s M.C.I. just in case something came up. I assured her that no one in the class would be able to tell he had a memory problem. I could hear her hesitation, but she agreed to let him in.

Since I told him that I’d signed him up he has asked with anxious frequency what day the class was, where it was, how long it was, what he had to take to the class, who would be at the class and how good were they at painting.

He has not been asking with enthusiasm. His has been a litany of fears. On the drive to the class this afternoon—“Where is it again,” a moment of silence, “Where is it again?”—Ralph was such a bundle of nerves that I almost gave in and said he didn’t have to go. The gray, drizzly cold didn’t help; bad weather is always an excuse for Ralph these days.

But we made it to the parking lot and he did get out of the car with his supplies.

I sat with my motor running as he walked in, pretending to take a call on the cell phone. By then I was a bundle of nerves myself, the same nerves I remember suffering when each of my kids faced the first day of school. I watched through the window as he trooped into the classroom and walked up to the teacher to introduce himself.

“So how was it?” I asked when he came out two hours later.

I could tell he was in a good mood, but I was not expecting what a good mood.

“Once I got started I was in the zone,” he said and showed me the painting he’s begun. He can’t wait to go back…

How happy-making to offer a success story for a change.