Tag Archives: Emory Memory Clinic

A New Drug Test for Alzheimer’s Apathy Creates a Different Test for Me

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

woman at computer

 

At our recent annual check up, NP Stephanie suggested Ralph might qualify for a study on the use of Ritalin to treat apathy.

Apathy is clearly an issue for Ralph as it is for so many others dealing with Alzheimer’s.  Or at least “apathy” is the quick way I, and evidently plenty of others, have described the increasing indifference and lethargy that occurs in those on the Alzheimer’s spectrum.

So barring a cure, finding a treatment for Alzheimer’s apathy is obviously a good idea. Sitting in Stephanie’s office, I agreed immediately that we should see if Ralph qualifies for the study. Stephanie called the clinical research nurse in charge hoping we could meet right away, but after an unsuccessful game of phone tag, she left the nurse a message with my contact info and we came home. A few days later I missed a call from the nurse. I called back. Soon we began our own game of phone tag that lasted two weeks. Then two or maybe three days ago, the nurse and I finally talked. She described a 6-month blind study requiring one daily pill that may or may not be Ritalin and a monthly visit to Emory. Not exactly demanding. While we were on the phone she went ahead and emailed me forms. I was to read them and get back to her with dates we could meet in the next two weeks.

Of course, I’ll get back to you right away, I told her as we hung up.

Except as hours and then days passed, I put off opening her e-mail.

But every time I glanced at the little red number 1 signifying an unopened e-mail on both  phone and computer, I couldn’t help thinking, Do I really want to be bothered? Is the minor possibility of improvement worth the effort?

But those questions were only a cover as I toyed with darker thoughts. Will Ralph be more trouble if he is less passive? Is it easier for me just to let him float further out to sea?

Then this morning, I got around to opening another email, this one from the Healthy Aging Study in which I participate. There were two short surveys, one on “resilience” and the other on “purpose”. Resilience was a piece of cake; I could tell my coping answers were fine. But as for purpose, ugh, I hated those questions I couldn’t avoid answering honestly—like   “Disagree Highly” with having goals I look forward to accomplishing.

I have had to face that I have the apathy problem. Or rather we both do. But I’m the one making decisions for Ralph.

So with admitted reluctance, I emailed the research nurse back …actually the emails have been flying as I write this, multi-tasking semi-whiz that I am …and his appointment for initial testing to see if he even qualifies  is scheduled for next Wednesday. I have added it to my calendar and his.

And now I actually feel much better, having passed, if barely, my test as good caregiver.

(And yes, if my overall mood does not lift, I promise I will deal with it.)

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.

 

ALZHEIMER’S CALENDAR GIRL

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

 

calendar girl

For everyone who has MCI or Early Alzheimer’s or who lives with someone with these forms of loss THE CALENDAR IS KING (QUEEN).

You don’t have to have memory loss to have trouble keeping up with scheduling complications of course. Dental appointments, meetings, pick up times, they all swirl through our lives and seem to swirl faster now with the advent of electronic calendar keeping. In fact my highly intelligent, mentally acute son texted me two weeks ago to arrange when he would pick me up from the airport that day, only to have me tell him I wasn’t arriving for my visit until a week later. LOL. Haha.

Still, driving Ralph home from his dental appointment yesterday morning, clutching the little card that noted the dates for his next two appointments, repeating to him the dates fifteen minutes later as I wrote them down on our big kitchen calendar, then again last night when he asked, and again this morning when he asked as soon as he woke up, it struck me how much of our daily life now revolves on what used to be a taken for granted detail.

In my first support group for dealing with newly diagnosed Mild Cognitive Impairment at the Emory Memory Clinic, there was discussion of calendar keeping—one man explained that he printed up a schedule daily for his; others had taken classes in calendar keeping—but I didn’t pay much attention. At the time, Ralph, who in his business life was always a stickler for keeping precise calendar records, still carried around his mini-notebook calendar. And frankly his life was not so busy that I thought it would be hard to keep up.

Well, his life is less busy now, so keeping up is not exactly a problem. He gets everywhere he needs to. But keeping track has become an obsession, really for both of us. As soon as there is something coming up, whether a dental appointment or a dinner date, or any other minor routine change of plans, the discussion of WHEN becomes endless. As usual the underlying issue is anxiety. But I think the matter of keeping up with days and calendar dates dominates over every other issue in our lives right now.

I gather many caregivers of those on the Alzheimer’s spectrum, especially spouses and children, deal with this WHEN problem. I am never sure I am dealing with it as well as I should but we muddle along. We have an erasable board that tracks the weekly schedule. And we have a large book calendar that I found at Office Depot; I looked at every one in the store and the best one for our needs includes a monthly at a glance as well as the weekly at a glance. And frankly his week-long pillbox is the best reminder of all what day it is.

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Ralph will take his pills and then, sometimes go read the weekly calendar. He rarely looks at the big calendar, but once in a while it comes in handy for him to get a time line straight. He does not have a calendar on his phone and has never learned to use a computer.

The fact is that Ralph doesn’t need to know what day it is most of the time. And he doesn’t need to know when his next eye doctor appointment is ahead of time. But he often wants to know. And then wants to know again and again.

As for me, I am having a little trouble letting go of my need to have him know things ahead. The marital habit of talking about the details of an upcoming birthday party, a worrisome doctor’s appointment, a visit from or to our kids, is hard to break. And I have not solved the basic conundrum:

Does bringing up what is coming up days or weeks ahead creates unnecessary tension for Ralph and is it a waste of time anyway since he won’t remember? Or does carrying on a conversation about future events, even if it means carrying on slight variations of the same conversation many times, have value in maintaining Ralph’s involvement in his own life whether he remembers or not?

Money on the Mind

Alzheimer caregiving, Uncategorized, , , , , , , ,

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Sex and Money. The two topics that generate curiosity but can be pretty uncomfortable to discuss in general, and in regard to Alzheimer’s especially. I admit I am not ready to talk about sex, but money? I’m not sure, but because I’m in the middle of doing taxes, money is on my mind.

How much do we have? Enough. We are lucky. (Around the time Ralph was diagnosed he decided to “retire” from his business managing rental property, much of which we owned. We—meaning I–sold most but not all of the property to create a nest egg while we live day to day off the reduced income from the rental property we still own.)

How much do we need?Frankly our needs are much less on a daily basis. We seldom eat out and we are not buying “stuff” any more. Our medical costs, including Ralph’s medicines for most of the year, are pretty much taken care of by Medicare and our supplemental insurance. Lately I have shelled out for some costly business expenses, emergency building repairs, that have eaten into our income and that’s been a little scary—a hint of how things could change on a dime.

What are the money issues to come?  Housing and medical care. I have written before about the value of long term care insurance. We fortunately purchased it before Ralph’s diagnosis. I am hoping that if/when Ralph’s condition requires outside care, the insurance will kick in. But I worry that the glut of baby-boomer like us may bankrupt the long-care insurance companies before I need help so I am storing away funds just in case.                                                                                                        And then there is housing. Despite Ralph’s current conviction that he will never leave, at some point the farm is not going to be viable, and I will have to decide when, not to mention where we go from here. Will we be able to sell or rent out the farm for enough to afford our next living situation(s)? I don’t know but frankly I am not ready to think about myself yet.

How well am I making financial decisions, alone, concerning our future?  The truth is that I tend to go for easy decisions. And there are decisions—about whether to spend money on a given repair, how to keep our savings safe without losing ground, how to plan for our future needs. Ralph used to discuss these topics endlessly and we still discuss them, but he doesn’t remember from conversation to conversation what we last decided. I try to think what Ralph would do, but then I also remember that I did not always agree with what Ralph did when he was in charge. (I resent the money we are still shelling out to support bad decisions Ralph made about ten years ago—around when his cognitive loss probably began.)                                                                                                                                                        The real answer here is that at my accountant’s suggestion, I turned to a fee-based financial planner who advises me holistically and is available whenever I call with a question on the smallest issue. In some ways that financial relationship is more intimate than any other.

Post Script:

Before I posted this I had to run an errand. On the way home I stopped at Starbucks where man in line behind me was acting a bit confused in a way I recognized; when his wife explained that he had Alzheimer’s, I said so did mine. We began talking like long-lost friends (we use the same doctor and support system at Emory and are at similar points in the progression). One of the things she discussed the unmanageable cost of  sending her husband to a day program while she was at her job.                                                                      When I got home  I found a response to my earlier post about driving and Alzheimer’s: A woman, who doesn’t drive herself, has realized her husband can no longer driver due to Alzheimer’s. How is she going to solve that situation? Public transportation? Taxis? Uber?       I am suddenly struck anew by the financial realities that Alzheimer’s poses for so many and by the need for our support systems to come to grips with the needs presented. I realize I need to contact our local Alzheimer’s Association to see what services are offered and to volunteer to solve the problem of gaps between needs and financial cost—not where I expected writing about money to take me but it has…..